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The experience of known egg donors : what it means to help a family member create a life Winter, Alanna Therese 2001

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THE EXPERIENCE OF KNOWN EGG DONORS: WHAT IT MEANS TO HELP A FAMILY MEMBER CREATE A LIFE by Alanna Therese Winter Bachelor of Science, University of Alberta, April 1990 Bachelor of Arts, McMaster University, April 1993 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES Department of Educational and Counselling Psychology and Special Education We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA September 2001 © Alanna Therese Winter, 2001 UBC Special Collections - Thesis Authorisation Form httpV/www.library.ubc.ca/spcoll/thesaiith.html In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University.of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y a v ailable for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It i s understood that copying or pu b l i c a t i o n of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of jzciu(aftor>&J£ CounSe/liOJ 7%yV,AQi The University of B r i t i s h Columbia Vancouver, Canada 1 ofl 9/28/01 10:28 AM ABSTRACT This study explores the experiences of three women who have donated their eggs to a family member and thereby helped them to create a life. Because there is little known about the post-donation experiences of those involved in known egg donation situations, this study was an attempt to begin to learn more about the implications and issues involved in this form of third-party reproduction from the perspective of the donor. A narrative research approach was utilized. To begin, an audio-taped, unstructured interview was conducted with the participants about their experiences as egg donors. Following the interview I developed third-person narrative accounts that were presented to the participants to ensure correspondence. The narrative accounts were then analyzed for common elements. Thirteen common elements were identified. The participants were also presented with these common elements to ensure they were representative of their experiences as known egg donors. The common elements were labeled: donor as instigator, consultation with spouse, compassion as the most significant motivator, importance of being finished building their own families, concerns about future health problems, clarity of donor's role, importance of pre-donation couraelling, feelings regarding disclosure to others, feelings regarding disclosure to the child(ren), positive responses from others, looking for resemblances, special relationship between donor's children and recipient's child(ren), relationships with recipients deepened. The results of the study indicate that for these three participants egg donation to a family member was a satisfying, life-enhancing experience. The results are discussed in light of current literature regarding egg donors, with suggestions made for counsellors working within the field of infertility treatment, and possible directions for future research. ii TABLE OF CONTENTS Abstract ii Table of Contents •• ui Acknowledgements vii CHAPTER ONE - INTRODUCTION 1 Purpose of the study 7 CHAPTER TWO - LITERATURE REVIEW 10 Background Information 10 The Egg Donation Procedure 12 What is Known about the Egg Donor 16 Demographic Profile 17 Psychological Profile 20 Motivations for Donating 22 Studies of the Egg Donor at Pre-donation 25 The Experience of Egg Donation 32 Post-donation Experiences 37 CHAPTER THREE - METHODOLOGY 41 Narrative Theory 43 Role of Researcher 46 Role of Participants 48 Procedure 50 Recruitment 50 Interview 52 iii Data Analysis 54 Criteria for Evaluation of the Worth of the Study 57 CHAPTER FOUR - RESULTS 60 Introduction 60 The Narratives 60 JR's Narrative 61 The Decision 61 The Donation 63 The Pregnancy 64 The Consequences 66 Mary's Narrative 70 The Decision 70 The Donation 71 The Pregnancy 72 The Consequences 74 Lola's Narrative 78 The Decision 78 The Donation 81 The Pregnancy 83 The Consequences -84 Overview of Common Elements ; 87 Table 1 - Common Elements Identified in Narratives 87 Donor as Instigator 88 IV Consultation with Spouse 89 Compassion as the Most Significant Motivator 90 Importance of Being Finished Building Their Own Families 91 Concerns about Future Health Problems 92 Clarity of Donor's Role 93 Importance of Pre-donation Coumelling 94 Feelings Regarding Disclosure to Others 95 Feelings Regarding Disclosure to the Child(ren) 97 Positive Responses from Others 98 Looking for Resemblances 99 Special Relationship Between Donor's Children and Recipient's Child(ren) 100 Relationship with Recipients Deepened 101 CHAPTER FIVE - DISCUSSION 103 Links to Pre-donation Literature 104 Links to the Donation Experience Literature 107 Links to Post-donation Literature 108 Implications for Counselling 110 Directions for Future Research 115 Limitations of the Study 116 Implications for Policy-makers 119 Conclusion 120 REFERENCES 121 APPENDICES Appendix A - Letter of Introduction 126 Appendix B - Informed Consent Form 128 Appendix C - Interview Questions 130 Appendix D - U.B.C. Ethics Review Approval 133 vi ACKNOWLEDGEMENTS I would like to thank the three women who shared their story of their experience of known egg donation, your generosity is greatly appreciated. I too hope that others contemplating egg donation will benefit from your stories. Thank you to Dr. Judith Daniluk for her unending support, guidance, wisdom, patience and sense of humor. You wield that whip and chair with panache! I am deeply grateful for your input and help in getting this study off the ground. I am also extremely appreciative of the help given to me by the other members of my thesis committee, my co-supervisor Dr. Maria Arvay who generously provided support and guidance in Dr. Daniluk's absense, and Professor Alison Rice. I am truly grateful for the support of my wonderful family, my mother, Moira and my beautiful sisters, Jodi and Kerri. Their confidence in my abilities helped me immensely. I would like to thank Kerri in particular for listening and supporting me throughout the seemingly never-ending process. I am also lucky enough to have great friends who have offered their wisdom, love, and general fabulous natures, Patricia, Marilyn, and Carolyn (to name only a few) - you are my inspirations. Finally, thank you to Ross for loving me, putting up with my complaints and always offering an escape from the ordeals of graduate school. Thank you also to Bonnie and Ginger, the sweetest cats around. I feel very blessed and lucky to have had such amazing support throughout my ji^ bprs writing this thesis. Thank you all. vii 1 CHAPTER ONE Introduction "Your children are not your children. They are the sons and daughters of life's longing for itself. They come through you but not from you. And though they are with you, yet they belong not to you." (Gibran, 1966, p. 18). It is an expectation among most cultures of the world that married individuals will have children. Apart from the obvious need for society to ensure its continuation, building a family has become the idealized responsibility of adults who wish to be valuable members of society as well as complete and actualized individuals (Veevers, 1980). Unfortunately, one in six couples experience problems conceiving a pregnancy or carrying a viable pregnancy to term, meaning that achievement of this cultural norm, and personal desire, is in jeopardy (Daniluk, 1991). For some of these couples a quest for a biological child may become the focus of their lives, as they undergo treatment programs that incur heavy financial and psychological costs (Lasker & Borg, 1994). There is a large body of research attesting to the psychosocial distress that accompanies infertility (e.g. Cook, 1987; Daniluk, 1997; Domar, 1997; LeiblumV 1997), as well as the different treatment options available to the infertile (e.g. Cooper & Glazer, 1994; McShane, 1997). Current advances in reproductive technology mean that infertile couples have more choices for treatment options and greater conception success rates than ever before (Sauer, 1996). Whether the source of the couple's fertility problem lies with the woman or the man, in some cases conception can now be achieved with the addition of a third party. In the case of male factor infertility, treatment is possible by artificially inseminating the woman with sperm donated from a man other than her partner. 2 Artificial insemination by donor has been used to treat infertile couples for over 100 years. Consequently, there is a growing pool of literature examining the psychological issues and social implications of this form of treatment (see Applegarth & Kingsberg, 1999; Cooper, 1997; Cooper & Glazer, 1996; Klock, 1997; Zolbrod & Covington, 1999). More recently, within the last 20 years, it became possible to treat women with fertility problems due to ovarian failure, poor quality eggs, or the possibility of transmitting genetic disorders, by utilizing eggs donated from another woman. This form of treatment is very popular and increasingly practiced worldwide (Sauer). In fact, due to the high success rates associated with egg donation procedures, it is increasingly being used as a first line of treatment in cases where the woman's egg quality or ovarian response is problematic (Braverman, 1993; McShane, 1997; Sauer). Throughout the world, recipients of gamete (i.e. sperm and egg) donation use anonymous donors or donors known to them such as friends or family members, depending on the legislation that exists in their country. For instance, France requires all donors to be anonymous, currently Canada has no legislation in place but has contemplated a bill that would include banning the use of anonymous donation practices, while the United States of America (USA) allows recipients to decide for themselves (Blyth, 1998). Initially the practice of egg donation began with known donors (Braverman, 1993), and as tales of successes were reported through the media, more and more women wishing to help the infertile volunteered to donate their eggs. Sauer (1996) describes the creation of an anonymous pool of egg donors at the University of Southern California, in this manner. As the practice of egg donation flourished, and anonymous donor pools grew, the use of anonymous donation became the preference for many 3 clinics. Soon issues of supply and demand became important concerns for clinics offering the treatment, and alternatives to the anonymous volunteer donor were being brainstormed and studied by researchers around the world. Opinion papers trumpeting the merits of both types of donations, anonymous and known, accompanied this research. Indeed the use of anonymous versus known donors remains controversial to this day (Applegarth & Kingsberg, 1999). Yet donor anonymity is just one of the controversial aspects associated with third-party reproduction. A host of legal, social and ethical dilemmas emerged concerning the newly found ability to separate genetic, gestational, and social parenting (Cooper, 1997). Aside from donor anonymity, other issues including: who should have access to these technologies; development of policies regarding openness versus secrecy in telling the offspring of their origins; and compensation to donors for their gametes; have become hotly debated worldwide. Indeed third-party reproduction has been the object of considerable attention, in both the popular media and academic circles, prompting advocates on all sides of these debates to write extensively in support of their positions (see Daniels, 1998; Daniels, Lewis & Curson, 1997; Daniels & Taylor, 1993; Guerin, 1998; Johnson, 1997; Landau, 1998; Marshall, 1998; Pennings, 1997; Pierce, Reitmeier, Jameton, Maclin, & De Jonge, 1995; Sauer, 1996; Sauer & Paulson, 1992; Shenfield & Steele, 1995). This has had an impact on the existing literature, as articles in support of certain positions as well as studies designed to validate those positions tend to form the majority of our knowledge of the consequences of third-party reproduction. 4 The methodological concerns inherent to infertility research in general also plague studies of third-party reproduction. For example, most of the infertility literature has not addressed variables such as ethnicity, class, marital status, or sexual orientation (Daniluk, 1997). Instead, small homogenous samples of self-selected, white, middle-class married women form the basis of the majority of current research. Granted, artificial reproductive technologies (ART) are costly and thus mainly middle and upper class individuals have access to them. Furthermore, some clinics have policies excluding single or lesbian women from receiving their services (Cooper, 1997; Daniels, &Bura, 1997). Still, a very real concern does involve both the researched and the researcher in most of the available studies. Because stigma has been associated with infertility throughout the ages, the participants in third-party reproduction are often quite reticent about revealing themselves in public. Privacy issues make it difficult for researchers outside of the clinics offering services to have access to this population. Therefore, a majority of the studies of third-party reproduction are conducted by individuals working within the confines of a clinic and most studies, therefore, sample from one geographical location and one type of client base. Additionally, this research is often based on the practices at specific clinics, with one of the goals of research being finding validation for, or making improvements to, their specific services. Very little research has been conducted for the sole purpose of understanding the impact of the experience of third-party reproduction on the parties involved in this alternate form of family building. Interestingly, studies seeking to answer the question of how participation in third-party reproduction impacts the participants have focused mainly on the recipients 5 of these donations (see Baetens, Devroey, Camus, Steirteghem & Ponjaert-Kristoffersen, 2000; Kazem, Thompson, Hamilton, & Templeton, 1995; Lessor, Reitz, Balmaceda & Asch, 1990; Nachtigall, Pitcher, Tschann, Becker, & Quiroga, 1997; Bertrand-Servais, Letur-Konirsch, Raoul-Duval & Frydman, 1993; Weil, Cornet, Sibony, Mandelbaum, & Salat-Baroux, 1994, to name only a few). This is the case primarily because this area of research developed out of the field of infertility where the infertile are the focus. Indeed, some of the studies that look at donor experiences explore the possibility of improving donor recruitment in order to treat the infertile couples more efficiently (eg. Ahuja, Mostyn, & Simons, 1997; and Kalfoglou & Gittelsohn, 2000). Studies about donors have therefore concentrated on identifying pre-donation variables such as attitudes about donation, motivation to donate, and the experience of donation itself (Bartlett, 1991; Bolton, Golombok, Cook, Bish, & Rust, 1991; Fielding, Handley, Fuqueno, Weaver, & Lui, 1998; Kan, Abdalla, Ogunyemi, Korea, & Latarche, 1998; Power, Baber, Abdalla, Kirkland, Leonard, & Studd, 1990; Weil et al., 1994). The few existing follow-up studies of egg donors focus primarily on questions about satisfaction with medical services, willingness to donate again, and encouraging others to donate (Adair & Purdie, 1996; Fielding et al., 1998; Kalfoglou & Gittelsohn, 2000; Klock, Braverman, & Rausch, 1998; Rosenberg & Epstein, 1995; Soderstrom-Anttila, 1995). The emotional experiences of the donation'and living with the knowledge that egg donors are biological mothers to another woman's gestational and social children, are rarely examined in the literature. While the literature is sparse in this area, practitioners are very aware of the possible emotional and social problems that may exist for all third-party reproduction 6 participants. Counselling has become an important part of most gamete donation programs, particularly for recipients (Cooper & Glazer, 1994). There is not, however, a similar emphasis on counselling donors. The American Society for Reproductive Medicine (ASRM) recommends psychological counselling for all parties involved in egg donation procedures, but interestingly makes no similar recommendations for sperm donors (Schover, cited in Applegarth & Kingsberg, 1999). This is the case despite the growing worldwide trend toward ensuring the rights of offspring to information regarding their genetic origins. Sweden and Australia have already put legislation in place allowing individuals conceived by donated gametes to have access to both non-identifying and identifying information about the donor (depending on when they were conceived). New Zealand, England, Canada, the Netherlands, and Finland are just some of the countries considering similar legislation (Blyth, 1998). Daniels has written extensively about the rights of offspring to know their genetic origins, and the accompanying need to provide counselling addressing the impact of donation on an individual's future (see 1993; Daniels & Taylor, 1993). The growing awareness of the many complex post-donation issues associated with gamete donation in general, and egg donation in particular, necessitates acquiring more information about the needs and experiences of all participants using these third-party reproductive options. These issues may be especially complex for donors known to the recipients, since continued involvement with the family after donation is to be expected. However, there are very few studies that address the post-donation experience of known egg donors. To date, post-donation studies have focused on the development of the children produced from egg donation, or the attachment process of the gestational mother (see Applegarth et al, 7 1995; & Golombok, Cook, Bish, & Murray, 1995). We have only anecdotal evidence of the issues that known egg donors face after their recipient becomes pregnant (Cooper & Glazer, 1994; Saunders & Garner, 1996). The literature has yet to describe the experiences, or assess the needs, of this group of women. Purpose of the Study Evidence has been presented regarding the importance of third-party reproduction in aiding infertile couples to have children. It is also apparent that participating in gamete-assisted conception opens individuals up to moral, ethical, and legal questions. Currently both anonymous and known egg donors play a role in third-party reproduction practices worldwide, yet we know very little about their experiences. In order to help infertile couples and prospective donors make informed choices about participation in third-party conception, it will be necessary to explore post-donation implications and issues. This is especially true for the egg donor in Canada, as prospective legislation seeks to place limitations on who is allowed to donate eggs. Before policy-makers can begin to contemplate who may or may not participate in egg donation-assisted conception it seems wise to explore the experiences of those who have already participated as egg donors. What does it mean to these women to play a role in such an important endeavor? What is life like after the child is born? How do the different parties negotiate their relationships with one another? Both policy-makers and prospective third-party reproduction participants need to be informed by answers to these and other important questions before making decisions regarding known egg donation. In particular, the long silent voice of the donor must be considered when contemplating what it means to participate in known egg donation. The purpose of this 8 study was to document the subjective experiences of women whose donation of eggs to a friend or family member resulted in a successful pregnancy and the birth of one or more children. In short, I hoped to answer the question: What are the meanings of the experiences of women whose egg donation to a family member or friend has resulted in the birth of a child or children? As this topic is complex and relatively uncharted territory, it made sense to use a qualitative method in order to explore and describe the experiences of these women. A qualitative methodology using in-depth, unstructured interviews was used to obtain a detailed description of the subjective experience of the participants' lives. Because I was interested in the experiences of known egg donors from the time they considered becoming donors to their ideas of what their futures may hold, I utilized a narrative analysis (Riessman, 1993). The experiences of the known egg donors viewed in this way, across time, seemed most effectively represented as stories. A feminist perspective guided this research. Feminist researchers value women's experiences and strive to make them the focus of the inquiry, while seeking to place both the researcher and the participant on the same level (Allen & Baber, 1992). In addition, the feminist researcher believes in demystifying the research process, by making findings and details known to the participants. I utilized member checks to ensure my research findings resonated with the participants. I sought feedback from the participants in order to gain a sense of correspondence between my representation of their experiences and their sense of what it was like to successfully help a friend or family member conceive and deliver a child. 9 A desired outcome of this study was to contribute to, and build upon the existing knowledge of the impact of participation in third-party reproduction. More specifically, this research was designed to give a voice to women who have donated their eggs to a friend or family member so they can report on their own experiences regarding the meaning and impact of their donation. In addition, this study attempted to gain insight into the post-donation experiences and reactions of the known egg donor, so that counsellors working with the infertile could be better informed as to the potential issues and implications involved in participating in known egg donation procedures. Because egg donation is controversial and subject to legal, moral, and ethical evaluation, the post-donation experiences of known egg donors may serve to shed light on the issues currently being debated nationally and worldwide. Canada has yet to pass legislation regarding artificial reproductive and genetic technologies. It was hoped that this study and others like it would be useful in informing future legislation. 10 CHAPTER TWO Literature Review In this chapter I will attempt to delineate the current theoretical and empirical research that pertains to the experience of known egg donors. However, before reviewing the relevant studies I will present a brief description of the egg donation procedure in order to help the reader appreciate the nature and extent of the donor's physical involvement in this medical process. Following this, I will look at what is known about the egg donor in terms of demographic and psychological characteristics as well as motivations for donating. The remainder of the chapter will be spent reviewing the studies of egg donors at pre-donation (mainly assessments of donors' attitudes regarding the more controversial issues around egg donation), the studies investigating the experience of undergoing the egg donation procedure, and finally the literature addressing the post-donation experience of egg donors in general, and known versus anonymous donors in particular. Background Information The treatment of male factor infertility has utilized third party participation from sperm donors for over 100 years. Sperm samples are collected easily and efficiently without the need of medical assistance and without accompanying medical risks. Sperm donation procedures require donors to procure their own sample and deposit it into a waiting container. The resulting semen is then screened for diseases, frozen, and screened again 6 months later before being used by the recipient. The actual donation procedure takes very little time and effort on the part of the donor. 11 With the development of in vitro fertilization (IVF) techniques, it became possible to treat female factor infertility with the participation of a third party egg donor. Many new reproductive technologies have evolved out of the IVF procedure, which involves a trnie-corisuming and physically demanding protocol for the removal of mature eggs from a woman's ovaries to be fertilized outside of her body and implanted in her uterus a few days later as an embryo (McShane, 1997). Cooper and Glazer (1994) remark on the possibilities that IVF created for treatment of the infertile: Now, embryos can be frozen, stored, and implanted in the couple at a later date, or they can be donated to another infertile couple who can then legally adopt them at the four-cell stage, enabling the latter to gestate as well as rear their child. As a result of IVF, a woman can carry another couple's genetic child, if the genetic/rearing mother is unable to do so for medical reasons. Finally, a woman can now donate eggs to an infertile woman who cannot produce viable eggs. These eggs can then be fertilized with the latter's husband's sperm and gestated in the uterus of the rearing mother (p. 29). In 1984, just six years after the birth of the first IVF baby Louise Brown (known as the "test-tube baby"), Lutjen and colleagues (cited in Applegarth & Kingsberg, 1999) reported the first successful pregnancy from egg donation. Less than a decade later in her survey on the current practices of egg donation, Braverman (1993) reported that the use of donor eggs had increased dramatically in clinics across the USA. Egg donation programs were established or in development in 73.2% of the 82 programs reporting. This number is almost certainly much higher today. 12 It is clear that the use of a third person to help a couple achieve a pregnancy has become an increasingly common route to creating a family. However, these family-building methods have raised a host of social, ethical and legal issues. Concerns for the recipient, the donor and the resulting offspring, though similar for both sperm and egg donation, seem to be especially debated in egg donation situations. Commenting on the criticisms regarding the compensation of egg donors, anonymity of participants, and the unconventional arrangement inherent to the egg donation method, Sauer (1996) admits to feeling perplexed since men have provided similar services as sperm donors for years without eliciting such fear or criticism. Perhaps it is because egg donation began almost exclusively with known donors (Braverman, 1993), or it may be the result of difficulties expanding the centuries-old definitions of motherhood and traditional family roles, or possibly it's due to the risky, arduous (and sometimes handsomely compensated) process required for the egg donation procedure compared to the ease and efficiency of sperm donation. Likely all three reasons factor into the attention egg donation receives from the media and researchers worldwide. A closer look at the egg donation process therefore seems warranted. The Egg Donation Procedure Following the first successful pregnancy via donated egg, medical practitioners have treated women with premature ovarian failure, older women, and those who are carriers of genetic diseases using donated eggs. Reports of delivery rates of 29.3% per cycle increasing to 86.1% after four cycles (cumulatively) attest to the success of treatment via egg donation procedures (Paulson et al., cited in Marcus & Brinsden, 1999). Similarly high success rates have been reported by Sauer (1996). This author 13 discusses an analysis of 500 cycles performed at the University of Southern California, revealing live births in greater than half of the women by the third consecutive cycle and more than 90% by the fifth attempt. The demand for eggs has therefore been great. In fact, a common problem cited in the literature is that demand for donor eggs far exceeds the supply. Because this is the case, much thought (by both researchers and fertility clinics) has been given to figuring out how to attract potential donors. One of the difficulties to overcome in recruiting donors is the medical procedure they must undergo to allow for collection of their eggs. Indeed, in a study designed to assess the recruitment and screening of egg donors Lindheim, Frumovitz, and Sauer (1998) reported that approximately 45% of the 339 potential egg donor candidates meeting the criteria for an interview (to be added to their paid donor registry) removed themselves from candidacy due to reservations about the procedure. The literature emphasizes that the procedure involved in egg donation is much more complex (ie. more time consuming, riskier, and difficult) than that for sperm donation (Braverman, 1993; Cooper & Glazer, 1994). Egg donation procedures require a lot more time and effort from the donor, and are associated with significantly more short and long-term risks. After making the decision to help an infertile couple, the donor is required to be seen by the physician to have a health history taken and a physical examination conducted. This includes blood test screening for: HIV, Hepatitis B and C, STDs (particularly syphilis), hemoglobin (to check for anemia), and relevant genetic tests such as cystic fibrosis screening. Most programs also require the donor to see a counsellor, 14 particularly for situations where the donor is helping a friend or relative to conceive. Counselling sessions typically involve screening procedures, possibly including psychological interviews, personality assessments, and other psychological testing (Cooper & Glazer, 1994). When the results of these interviews and tests are satisfactory, the donor can begin the course of medications that will result in the "harvesting" or collection of her eggs. Brinsden (1999) documents the procedure as follows. Donors are required to prepare their ovaries by initially desensitizing the pituitary gland using a gonadotropin releasing hormone agonist such as Synarel (nafarelin) or Suprefact (buserelin). Donors are required to sniff the Synarel once into each nostril twice per day from the 23 r d day of the menstrual cycle preceding the treatment month. This medication must be taken until the day before the retrieval procedure. In some cases these hormones are administered by daily injections, reported to be upsetting and stressful procedures associated with increased anxiety, physical discomfort, and sore and bruised buttocks (Cooper & Glazer, 1994; Rosenberg & Epstein, 1995). The purpose of these medications is two-fold. First, they enhance the growth and maturation of as many follicles as possible so that multiple eggs may be collected. Second, they control the timing of ovulation to ensure that eggs can be collected before they are spontaneously released. Upon commencing medication use, donors must attend the clinic to establish an initial baseline via ultrasound scan and blood tests. When these are determined to be normal, the ovaries are then stimulated with pure Follicle Stimulating Hormone (FSH), injected subcutaneously. FSH injections typically last 7-10 days with frequent visits to the clinic to assess ovarian response/development, using ultrasound scans and plasma 15 hormone assays (blood tests). Studies show that these medications have side-effects which can include: loss of appetite, fatigue, tiredness, headaches, nausea, irritability, cramping, discharge, weight gain, breast swelling, joint aches, bloating, dry mouth, hot flashes and mood swings (Kalfoglou & Gittelsohn, 2000; Rosenberg & Epstein, 1995). In addition, the use of the medications occasionally results in overstimulation of the ovaries. Ovarian hyperstimulation, as it is called, generally causes enlargement of the ovaries accompanied by abdominal pain and discomfort. In severe cases, hospitalization may be required. When it is determined that the donor's eggs are ready for recovery a Human Chorionic Gonadotrophin (HcG) injection is scheduled the night before the retrieval. The following day the eggs are collected. The retrieval, considered a minor surgical procedure, is performed vaginally under ultrasound control and with either a local or general anesthetic. The ultrasound probe is inserted into the vagina, where it guides a needle which pierces the back of the woman's vagina and is then inserted into the ovarian follicles one by one, aspirating follicular fluid from each follicle (Cooper & Glazer, 1994). In most cases the donor is able to go home about two to four hours after egg collection. Following the egg donation procedure, there is a great diversity amongst donors with regard to resuming normal activities. Two studies reporting on the after-effects of the donation procedure state that post-donation symptoms ranged from the immediate effects of nausea and bloating to requirements of bed rest (from a few days to a week) and subsequent menstruation characterized by painful cramps and ovulatory pain (Kalfoglou & Gittelsohn, 2000; Rosenberg & Epstein, 1995). 16 Since the procedure is obviously taxing to the donor, it is little wonder that researchers are curious about what sort of woman would choose to donate. Explorations have been made into the characteristics of donors and the reasons behind their decisions to become an egg donor. The demographic and psychological characteristics of the egg donors as reported in the literature, and the documented motivators for becoming an egg donor are discussed in the next section. What is known about the Egg Donor Cooper and Glazer (1994) classify egg donors into four different categories. The first is the infertile woman undergoing IVF who donates excess eggs; the second is the fertile woman undergoing elective sterilization procedures (such as tubal ligation); fertile women known to their recipients make up the third category; and finally there are fertile women who are donating anonymously. The focus of the majority of research is on the latter two groups, with little attention paid to the former two groups. Cooper and Glazer remark that this is due to the fact that infertile IVF patients, and women undergoing tubal ligation have not been reliable sources of donated eggs. On the other hand, friends and relatives are a common source, with sisters being the preferred choice for many. Intergenerational donation is another option for some, though only certain clinics allow this, since the emotional and ethical issues arising from the complex relationships that result are particularly difficult (for example a daughter donating to her mother will be the genetic mother of her social sister). Although egg donation procedures began with known donation situations, the preference for anonymous donors has increased due to issues of availability and social complexity. 17 In their guidelines for gamete donation, the American Fertility Society (AFS) recommends the use of anonymous donors to reduce the potential for legal and emotional complications for all parties involved (cited in Pierce, Reitemeier, Jameton, Maclin & De Jonge, 1995). Other recommendations include that donors should: be of legal age but not more than 34 years old; have a previous history of documented fertility (though this is not required); and be made fully aware of the medical procedures involved and all potential risks, as well as the legal and ethical aspects involved in donation. The Human Fertilization and Embryology Authority (HFEA), the British equivalent of the AFS, allows donation from anonymous donors (though known donors are accepted under special circumstances) under the age of 35 (Marcus & Brinsden, 1999). The HFEA also stipulates that payment for gametes is not to be made, in order to reduce the possibility of coercion. Given the recommendations for anonymity by foreign regulatory bodies it seems important to investigate the post-donation experiences of known donors to assess whether these "complications" warrant consideration for Canadian policy-making. Demographic Profile. Organizations like the AFS seek to provide guidelines regarding the type of woman who may donate her eggs, but who are the actual donors? Two studies that investigated the demographic profile of egg donors reveal great similarity in their descriptions of the average donor. Sauer and Paulson (1992) interviewed 61 prospective egg donors with respect to their demographics, past and present health status, and past reproductive histories. Of these potential donors the 50 that went on to actually donate 18 their eggs are described as married, middle-class, college-educated mothers. The average age of the donor was 31.7 years old. In another study investigating egg donor demographics Kan, Abdalla, Ogunyemi, Korea, and Latarche (1998) surveyed 145 anonymous egg donors. These authors used a questionnaire inquiring into the age, marital status, fertility status, ethnic backgrounds and occupation of the egg donors. The results again showed a trend towards donors who are married/cohabiting, employed, and mothers, with an average age of 31.2 years. In addition Caucasians made up a large majority of these donors (96.7%). Although these two studies demonstrated some agreement as to the demographic characteristics of the typical egg donor, there is some need to be cautious when generalizing these results. First, Sauer and Paulson's (1992) study was conducted at an American University using an egg donation program that "has functioned without the need for solicitation of donors" (p.726). In addition, the donors participating in this study were mainly non-anonymous (66%). It is likely that other programs in the United States which advertise openly and aggressively for donations by young women will have anonymous donors who are liable to be "unmarried, nulliparous women, typically still in school" (Sauer, 1996, p. 1149). While the second study by Kan and colleagues (1998) looked only at anonymous donors, their study was conducted in the United Kingdom (UK) where gamete donation programs do not offer compensation in the way of money or other benefits for the supply of gametes. Since compensation for gametes, particularly eggs, is big business in the USA the typical donor at clinics using these methods would likely be different. With these cautions in mind, the results of the two studies reviewed probably generalize to 19 Canada very well, as the majority of Canadian egg donors are non-anonymous and unpaid. It is also worthwhile to note that the findings of seven other empirical studies that included demographic information on egg donors were mostly in agreement with the previously mentioned demographic profile. Of these studies, three were conducted in the UK (Power et al., 1990; Kirkland et al., 1992; Fielding et al., 1998), three in the USA (Lindheim et al., 1998; Kalfoglou et al., 2000; Klock et al., 1998), and the other one in Finland (Soderstrom-Anttila, 1995). In these studies the average donor's age ranged from 26.4 to 31.2 years. A large majority of donors were married (ranging from a low of 50% to a high of 88%), had children (the studies mentioning this variable showed ranges between 68% and 93%), and were employed (62% to 99% of donors). The only study that diverged from this pattern was the American study by Lindheim and colleagues (1998) examining the establishment of a paid egg donor registry. These authors followed the progression of 603 potential anonymous donors through the screening process for being added to their egg donor registry where payment for donation would occur. Of these potential donors, only 135 were added to the registry. The majority of these donors were unmarried (85%), college educated (90%), and employed (75%). The factors mentioned earlier, including compensation for donation as well as advertising aimed at a younger audience, probably influenced the demographics of those women included in this study. From the review of studies assessing the demographic characteristics of the typical egg donor, it seems possible to conclude that on average women who donate their eggs to help others have children tend to be: in their late twenties to early thirties; married with children of their own; employed; and well-educated. Any substantial 20 differences among egg donors are probably the result of compensation for participating in an egg donation program. Thus, whether a donor is anonymous or known appears to make little difference except when the anonymous donor is paid. As Sauer (1996) suggests, the typical donor responding to advertisements for paid donation will likely be younger, perhaps still in college, and with an unknown fertility status as demonstrated by Lindheim and colleagues' (1998) description of the women in their donor pool as single, nulliparous and in their twenties. The women who participated in this study shared similar characteristics to the profile of the typical non-anonymous, non-compensated donor mentioned initially, they were all Caucasian, married mothers aged 32-34 at the time of donation. Psychological Profile The psychological profile of the donor is also considered to be an important factor when assessing potential egg donation candidates. Two studies assessing the psychological profile of the egg donor will be reviewed here. In the first study Bartlett (1991) attempted to investigate the psychiatric issues associated with non-anonymous egg donation. In this study both recipients and their donors (14 and 16 women respectively) were asked to complete a battery of psychological tests and to undergo a semi-structured psychiatric interview as part of the donation intake process. The tests completed were: a life events checklist, the Perceived Stress Scale, and the Hopkins Symptom Checklist 90. No description of what the tests were meant to reveal, nor the rationale for choosing those instruments, was provided. In discussing the results, Bartlett reported that: "the mean score of each patient sample were within the normal range" (p.434). The fact that participants "did not report distress 21 or other emotional symptoms" (p.435) was taken as further support of the psychological adjustment of the egg donors in this study. In the second study (Klock et al., 1998) anonymous donors' psychological characteristics were assessed to determine if any psychological factors were related to post-donation satisfaction and a willingness to donate again. Twenty-five women who had previously donated their eggs were given five tests to complete: The Personality Assessment Inventory, State Trait Anxiety Inventory, Rosenberg Self Esteem Scale, Donor Ambivalence Scale, and the Pennsylvania Reproductive Associates Infertility Scale. Again results indicated that donors scored within the normal range on all the measures, prompting the authors to conclude that, "in general, the women selected to donate eggs anonymously are psychologically well-adjusted" (p.235). The authors also point out that, although generalizability of their results is limited due to the small sample size, the results confirm findings from previous studies in terms of the psychological well-being and adjustment of women who donate their eggs to help others have children. Only one other study challenged this conclusion. Schover, Collins, Quigley, Blankstein, and Kanoti (cited in Klock et al., 1998) included personality testing for all donor candidates instead of just those selected to donate. Interestingly, elevated scores for emotional disturbances were reported for 38% of their sample. Klock and colleagues acknowlege that in addition to the inclusion of non-donors in this study the authors chose to use the Minnesota Multiphasic Personality Inventory, a test with a differing ability to detect psychopathology. Given that only half of these women were accepted as donors, Klock and colleagues argue that the typical anonymous egg donor is more likely to be a well-adjusted, high functioning individual. 22 These results attest to the importance of screening egg donors for psychological disturbances and are confirmed by the findings of a study by Lindheim and colleagues (1998). In their study documenting the recruitment and assessment of potential egg donors, 13% of the 166 donors completing the second interview for inclusion in a donor registry program were excluded from donating due to psychological factors. Some of the reasons given for exclusion included: failure to resolve previous sexual abuse, depressive disorders, eating disorders, sexual dysfunctions, misrepresentation of personal histories, and active "recreational" drug use. Some authors (eg. Cooper & Glazer, 1994; Klock et al., 1998) think that potential donors may be motivated to donate their eggs to help in the healing of psychological wounds, and agree that screening is therefore important. Other motivations for donating eggs are much more common and will be examined next. Motivations for Donating A discussion of the motivations of both anonymous and known egg donors is found in the writings of Cooper and Glazer (1994). Based on their anecdotal and clinical experiences in two large fertility programs in the USA, they comment that the majority of anonymous donors seem to be motivated by empathy and altruism. It is common for potential donors to have knowledge of someone who is, or has been, infertile and to be sensitive to the heartache that infertility has caused. Another motivating factor for donating is the desire to make up for past reproductive losses, including abortions, giving up a child for adoption, and necessary but unwanted surgical procedures such as hysterectomies. 23 The study of 25 anonymous egg donors by Klock and colleagues (1998) confirms these reasons as strong motivators for donation. The donors investigated in this study revealed motivations that were mainly altruistic. Other reasons cited included empathy (for an infertile friend), financial gain (compensation), technological interest, increased self esteem, testing their own fertility, and making up for a past abortion. It should be noted here that compensation for donation is a highly controversial topic and in fact is largely restricted to the USA. Canada, France, the UK, and most countries allowing egg donation procedures do not permit payment to egg donors, beyond the reasonable compensation for travel and time (although this is sometimes difficult to regulate). The motivation to participate in known donation appears to be primarily due to "enormous empathy for the recipient" according to Cooper and Glazer (1994, p. 220). Bartlett's (1991) study of 16 non-anonymous donors reports that motivations were initially given as altruistic (94% of donors reported this reason), though interviews with the donors indicated several other factors that played a role in their decision to donate. These included making up for a voluntary abortion, testing their own genetics, alleviation of feelings of inferiority, and finally feeling flattered at being asked to donate. A French study comparing the psychological aspects of anonymous and non-anonymous egg donation found both types of donors possessed similar motivations (Weil, Cornet, Sibony, Mandelbaum, & Salat-Baroux, 1994). The majority of the 110 donors (41 anonymous and 69 known) interviewed saw donation as an act of feminine solidarity (48% of anonymous and 42% of known donors). The motivations of altruism and empathy were also reported (26% of anonymous donors and 7% of known donors 24 were thinking of others, while 29% of anonymous and 58% of known donors identified with the recipient). The themes of altruism and empathy, which appear strongest in most research studies, were less apparent in Kalfoglou and Gittelsohn's (2000) study of American women's experiences with egg donation. This qualitative study found financial compensation to be the primary motivation for approximately half of the participants (22 of whom were anonymous donors and 7 known). The researchers note however, that some of these women's altruistic feelings increased as the process progressed, resulting in feelings of surprise at how satisfying the experience was. The other major motivation for donors in this study was helping an infertile couple, since half of the donors knew someone, or where themselves, experiencing infertility. The remaining motivators indicated by the donors participating in this study included: feeling special, atoning for previous abortions, interest in the technology, pride at fitting the profile, and desire for genetic continuation without the responsibility for a child. The sample was comprised of mainly anonymous donors (only 7 were known to their recipients, with 4 having met the recipients over the internet for the express purpose of donating), though no mention is made regarding differences in motivation between the groups apart from the fact that the 3 known donors who had friendships with their recipients only donated to help their friend. Finally, the remaining studies mentioning motivations of egg donors report similar findings. Empathy and altruism are mentioned by these studies as the primary motivator (Ahuja, Mostyn, & Simons, 1997; Baetens, Devroey, Camus, Van Steirteghem, & Ponjaert-Kristofferson, 2000). Additional reasons cited were: checking 25 their own fertility (Power, et al., 1990), compensation (Rosenberg & Epstein, 1995; Sauer & Paulson, 1992), curiosity about the procedure (Soderstrom-Anttila, 1995), and having seen programs on television expressing a need for donors (Fielding, et al., 1998). In terms of the findings discussed here, the motivations women have expressed for donating their eggs are based primarily on feelings of altruism and empathy. Known donors in particular seem to be motivated by the desire to help their friends or family members having seen the pain infertility has caused. Because compensation was not an issue in this researcher's study, altruism and empathy served as the principal motivators for my participants. Given that these donors donated because of their relationship to the recipient, it was of interest to examine the effect, if any, that the donation had on their relationships with the recipient (and others) following the donation and birth of the resulting child. I will now turn my attention to the literature examining the experiences of the egg donors. To begin, I will review the pre-donation studies assessing the attitudes of egg donors, followed by the studies investigating the egg donors' experience of the egg donation procedure, and finally I will look at what has been reported regarding the post-donation implications of having participated in third-party reproduction as an egg donor. Studies of the Egg Donor at Pre-donation Efforts have been made to assess the attitudes of women who choose to donate their eggs to help others have children. Four empirical studies investigating the egg donor before the donation procedure will be reviewed here. These studies examine the attitudes held by egg donors about the controversial social and ethical aspects of egg donation. Because known egg donors live with the social and ethical consequences of 26 having donated their eggs to a friend or family member, the attitudes of donors regarding these issues are especially important for understanding the post-donation implications and issues faced by donors. Disclosure is an important issue that must be addressed by the parties involved in known egg donation. Who is to be told that known egg donation resulted in the birth of the recipients' child? Family members, friends and the child must all be considered. Another issue to be dealt with is the future contact between the donor and the child conceived of the egg donation procedure. Additionally, negotiation of the relationship between the participants of third-party reproduction may be complicated if their attitudes regarding the status of the gamete or the importance of genetics versus social parenting differ. Bolton, Golombok, Cook, Bish and Rust (1991) conducted a quantitative study which compared attitudes toward donor insemination and egg donation of recipients, potential donors and the general public. Of the 399 subjects participating in their questionnaire study, 168 were potential egg donors (IVF patients willing to donate excess eggs). The questionnaire assessed subjects' attitudes regarding: the acceptance of gamete donation, donor anonymity, donor records, and donor contact with the child. The results indicate that these donors regarded the treatment of infertility with donated gametes more favorably than the general public, but not as favorably as gamete recipients. The donors were also in favor of donor anonymity, though interestingly subjects favored anonymity for sperm donors more than for egg donors. Regarding the issue of privacy of the donor, the donors' responses indicated some uncertainty about whether records containing identifying and/or non-identifying information about the donor should be kept and who should keep them. Only 21% of the potential egg donors 27 agreed that children conceived of donor gametes should be told of their origins. Finally, the most interesting finding of this study was the donors' attitudes towards known donors remaining in contact with the child born from their donation. Eighty percent of the egg donors surveyed in this study were against a donor who is a friend or relative of the recipient keeping in contact with the child. Although donors felt this was more true for sperm donors than egg donors, the results indicate an overwhelmingly negative attitude toward known donors remaining in contact with children conceived through their egg donation. There are problems with generalizing the attitudes of the subjects of this study to all egg donors, and particularly to known egg donors. Using only IVF patients to represent the attitudes of egg donors poses the biggest difficulty. The concern here is that IVF patients are themselves seeking treatment for infertility and are possibly future gamete recipients, depending on the success of their own treatments. Thus their attitudes will more closely reflect the attitudes of egg donation recipients rather than egg donors. It is likely known donors would not hold similar attitudes. Future contact between the donor and the resulting child would probably be inevitable for interfamilial donation in particular. Another study comparing the attitudes of donors and recipients to egg donation was conducted by Kirkland, Power, Burton, Baber, Studd, and Abdalla (1992). These researchers received completed questionnaires from 35 egg donors (3 of whom were known donors), and 50 recipients. The results of this study revealed that disclosure of participation in the egg donation procedure occurred for 86% of donors and 74% of recipients (disclosure in this study referred to telling someone other than their partners). 28 Donors' responses indicated that anonymity was much less important to them than it was to recipients (63% of donors would donate if their names were revealed while only 23% of recipients would accept donations if it meant their names would be revealed). Also when asked about hypothetical donation situations, donors were more likely to agree to donate to a known recipient (70%) than the recipients were to agree to accept from a known donor (44%). In terms of future contact between the donor and the resulting child, 54% of donors were okay with the child contacting them when they become of age, while a full 90% of recipients were against the donor contacting the child later in life (the question of recipients' feelings about the child contacting the donor in the future was not asked). Finally, 56% of donors indicated they would not wish to be told if they were born from a donated egg. The authors of this study did not mention any differences between the responses of the anonymous donors and known donors. These results seem to confirm that issues of anonymity and disclosure are important to those involved in the egg donation procedure. Weil and colleagues (1994) sought to examine the psychological aspects of anonymous and non-anonymous egg donation in their questionnaire-based study. The attitudes of 41 anonymous donors and their recipients, and 69 known donors and their recipients were assessed. The majority of donors (75%) considered their eggs to be worthless things if not used, at most they felt the eggs were similar to organs such as kidneys or blood. Ten percent of anonymous donors and 17% of known donors considered the egg to be "part of a project for a child" (p. 1345). These results combined with similar attitudes expressed by the recipients indicate that for the most part all of these participants in conception via donated eggs view the egg as being similar to an 29 organ that can only be used if fertilized. Attitudes toward disclosure were also considered in this study. Al l partners were required to be told of participation in egg donation procedures for this study, but donors also told their children (31% of known donors, 0 anonymous donors), members of their family (62% of known donors and 42% of anonymous donors), and friends (29 % of known donors and 19% of anonymous donors). Finally, both anonymous and known donors felt that the recipient had to choose whether to tell the child of his or her origins, stating that the donors themselves had nothing to tell the child. Boundaries between the roles of donor and recipient in terms of parenting seem to be clearly drawn for the participants of this study. This is an important consideration for known donors as "the majority of donors considered it natural to continue their previous relationship with the parents, and therefore to be able to see the child" (Weil et al., p. 1346). As I expected this was also the case for the egg donors participating in my study. Therefore an exploration of parental boundary issues and how these are negotiated by both parties was an informative part of the study's results and will be discussed in the final chapter with regard to how they serve to illuminate the issue of the purported "complications" the AFS contends are involved in known egg donation. The last study to be reviewed (Baetens, et al., 2000) explored the attitudes of egg donors and recipients during counselling interviews. Participants were comprised of 103 recipients and donors known to each other, and 41 recipients and donors undergoing anonymous donation procedures. During the interviews researchers noted that 58% of donors mentioned they felt there was a distinction between the eggs they donate and the child born from the donation. The commonly expressed view by these donors was that 30 the mother of the child is the woman who carries and gives birth to the child. Consequently, these donors expressed no wish to take on any parental responsibilities toward the child. Conversely, 39% of donors felt there wasn't a clear-cut distinction between their egg and the resulting child, such that 12.5% of these donors preferred to be anonymous so they could avoid contact with the child. Another 9% of the donors who did not make a distinction preferred to be known donors because they felt a sense of "responsibility towards the child and wished to be sure that the child was well taken care of by the parents" (Baetens, et al., p. 479). Ambivalent feelings towards the child born from their donation were expressed by 27% of donors. This study also revealed that intentions to remain in contact depended upon the frequency of contact the recipients and donors had before the donation procedure. When contact before treatment was frequent, all parties believed it would continue to be so after treatment. The only qualification provided was that distance sometimes meant donors who were close relatives or friends could only meet occasionally with their recipients. These results seem to indicate that donors who have a previous relationship with the recipient of their donation experience the significance of their gametes in the creation of the child differently. Because these donors plan to have an ongoing relationship with the recipients, clarity about their role in the life of the child born of their donation is necessary. To sum, it appears that most egg donors feel little need for secrecy, often telling family members and friends about their donations. Known donors seem to disclose involvement in the donation procedure more so than anonymous donors. Cooper and Glazer (1994) think this may be inevitable in known donation situations as most family 31 members know about the recipients' infertility and their decisions around treatment. The attitudes of donors regarding the child's right to know they were conceived via donated egg were rarely elicited. Apparently researchers felt this was an issue for the recipients to ponder. The study that did assess donors' views on this issue revealed that donors agreed the recipients need to decide this matter for themselves. Some donors did express a preference for not wanting to know if they had been born of an egg donation procedure, leading one to infer these donors don't believe telling the child is a good idea. It also seems that the level of contact between known donors and the child born from their donation depends on the relationship of the donor. Known donors with pre-donation contact with their recipients assume they will continue to have a relationship with the recipient and therefore believe they will see the child in the future, though it seems anonymous donors are not sure that this is a great idea. Finally, there are some conflicting results about how donors view their eggs and therefore their role in relation to the resulting child. Participants of one study (Weil, et al., 1994) felt that donating their eggs was akin to donating an organ such as a kidney or blood, while some of the participants in another study (Baetens, et al., 2000) felt that there was no distinction between their eggs and the child born from them. Given what is known about donors' attitudes toward some of the more controversial issues surrounding egg donation, it seems further examination of both the attitudes of egg donors and how these attitudes are reflected in the post-donation experiences of known egg donors is warranted. 32 The Experience of Egg Donation The literature reviewed thus far indicates the beginnings of a limited body of knowledge regarding the characteristics of, motivations for, and attitudes of women who donate their eggs. I will now review the studies investigating the egg donors' experiences of participating in the egg donation procedure. The following five studies, while conducted at post-donation, assessed the egg donors' experience of the process of donation. As previously mentioned the egg donation procedure requires a great deal from the egg donor. It seems likely that how donors experience the donation procedure will have an influence on their post-donation experiences. If the donation was particularly difficult or the donor felt unappreciated or poorly treated, then perhaps negative feelings will impact future relationships with recipients. In addition, because these five studies were conducted following the donation, some short-term consequences for the donors are reported. These reports of short-term outcomes may be indicative of issues in the longer-term post-donation experiences of egg donors. In the first study to be reviewed Rosenberg and Epstein (1995) attempted to determine the emotional and medical responses of anonymous egg donors to the egg donation procedures. Quantitative and qualitative data were collected from the responses of 32 women who donated eggs anonymously. Questionnaires were given to former egg donors from a period of one month up to 18 months following their donation. Donors reported feeling significant physical discomfort, particularly with regard to bloating both before and after the egg retrieval. Though anxiety was mentioned with regard to the requirement of self-injections, the actual retrieval process was well tolerated. There were few donor reports of serious adverse emotional effects, with most 33 donors reporting positive feelings about their contribution. In fact, 90% reported that participation changed their lives in a positive way. Of interest was the finding that the most negative aspect of the experience reported by the women was the lack of information received regarding the outcome of their donation. Clearly this would not be an issue for known donors as their previous relationship with the recipient makes it likely they would have knowledge of the outcome of donation. Another follow-up study conducted on anonymous egg donors at one year post-donation came out of Finland (Soderstrom-Anttila, 1995). Thirty unpaid donors filled out a follow-up questionnaire assessing their donation experience. The findings from this research are similar to those of Rosenberg and Epstein (1995), in that most donors were satisfied with the process. In this study 78% of donors reported a willingness to donate again. The only negative symptoms reported were the slight discomfort and side-effects caused by the required medications. The donors believed their feelings were sufficiently taken into account during treatment (90% agreement), and reported no negative emotional effects as of this time. While less than half of these donors did not want information on the recipients or resulting offspring, 67% said they would have liked to have known whether a child resulted from their donation. Again these results affirm that there are possible negative feelings that result from not knowing the outcome of a donation, which would likely not be an issue for known donors. A different study by Klock and colleagues (1998) assessed the satisfaction of 25 anonymous egg donors. These researchers used pre-donation psychological testing and a follow-up satisfaction ratings questionnaire filled out two weeks after completion of the egg donation procedure. A high level of post-donation satisfaction was reported, 34 with 76% of donors stating they would be willing to donate again. Similar to the findings of the previous two studies, the majority of these donors (68%) would liked to have known if a pregnancy resulted from their donation. A 1998 follow-up study by Fielding and colleagues included known donors in their assessment of the donation experience. Thirty-nine egg donors (including 7 known donors) were given questionnaires regarding their experience of donation and their attitudes and motivation to donate. These women had donated their eggs between January 1992 and June 1996, meaning that assessment occurred after a substantial period of time. The responses of these egg donors were compared with responses of 34 anonymous semen donors. Results indicated that most anonymous egg donors felt their donation was a success, with 60% indicating a willingness to donate again. A comparison with semen donors revealed a greater tendency for egg donors to be more involved in the process, by wanting to know something about the recipients. As well, they also expressed a desire to be informed regarding the outcome of their donation. More importantly, this study provided a rare look at known donors' experience of egg donation. Not surprisingly the researchers found evidence of greater effects on family members than was true for anonymous donors. Three of the seven known donors answered in the affirmative to a question inquiring if donation had influenced their relationships with their partners/families/friends/others. Two of the comments were negative in nature, alluding to deteriorations in their relationships with the recipient following the donation. The authors mention that pressure from recipients lead to feelings of obligation in the donor to continue to donate, making this a concern for known donation. No indication of pre-donation counselling for any of the participants is 35 ~ made, although the authors reported that neither anonymous nor known donors felt there was a need for counselling. Interestingly, and in contrast to previously reviewed literature, there was evidence of greater secrecy in the known donor group; four of the seven women had not told their own children about their donation, and two of the donors with successful outcomes (recipients had live births as a result of the donation) had only told one other person and did not intend on telling anyone else. In the discussion of their results, these authors state that more research into long-term outcomes of participating in known egg donation needs to be conducted. This study attempted to explore the post-donation experience including the longer-term outcomes for the egg donor of participating in known egg donation. The most recent study available (Kalfoglou & Gittlesohn, 2000) is a qualitative follow-up study of 33 former egg donors' experiences with egg donation. Twenty-two of the women were anonymous donors, three were known donors (with prior friendships to recipient), and four had met their recipients over the internet. In this study in-depth interviews were conducted to assess motivation, satisfaction with the process, and the experience of donation itself. The length of time since donation was not standard among participants; some participants had donated multiple times and therefore reflected on donations that may have occurred many years previously. Although none of these donors reported regret at having donated, they also didn't report complete satisfaction with the process. Time and inconvenience were cited as factors that could be improved upon, as were demonstrated appreciation for the donor, and improved medical care and counselling (mostly regarding disclosure of relevant information to help the donor feel more like a collaborator rather than a patient). Similar to the studies reviewed in this 36 section, this study also found that anonymous donors would have appreciated follow-up information regarding the outcome of their donation. However, these researchers suggest that more research needs to be conducted to determine the long-term effects of informing the donor about the outcome before they could recommend such a practice. It seems that studies investigating the long-term effects of participating in egg donation are needed, particularly for cases of known egg donation. Several conclusions can be gathered from the results of these studies. It appears that both anonymous and known egg donors are generally satisfied with the egg donation procedure. Positive feelings and a sense of accomplishment characterized the donation experience. One can infer that this would be even greater for known donors who are privy to knowledge regarding the outcome of their donation. Confirmation for this fact is seen in the results that indicate the only negative feelings mentioned by anonymous donors seemed to involve the lack of information they received regarding the outcome of their donations (Klock et al., 1998; Fielding et al., 1998; Rosenberg & Epstein, 1995; Soderstrom-Anttila, 1995). For known donors, their relationship with the recipient may mean that the stress of treatment and negative feelings of obligation to continue treatment (meaning they must undergo the donation procedure again) or guilt due to lack of success may be factors influencing their experience of participating in known egg donation. This researcher interviewed women who have had successful donation experiences so this did not play a significant part in their experiences of egg donation. Still it seems important to consider the donor's experience of donation and whether this experience has altered or affected the recipient/donor relationship. 37 Post-Donation Experiences Turning to the literature on the post-donation outcomes for participation in known egg donation, one is struck by the lack of empirical studies in this area. Little seems to be known about the post-donation experiences of the egg donor. Several researchers have made general comments or reported their knowledge anecdotally. In this section I will attempt to look at the information contained in these reports in an effort to determine what we know about the post-donation implication and issues of participation in known egg donation. Cooper and Glazer (1994) write about their clinical experience of the post-donation issues likely to be faced by known egg donors. These include the possibility of known donors experiencing feelings of letdown after pregnancy occurs, as they are no longer an integral part of the reproduction process. In addition, they state that a donor's worry over passing on "good genes", what their obligations toward the child and parents will be, as well as the necessity of being able to relinquish the importance of the genetic tie as secondary to the importance of gestational/social parenting are some of the issues that may need to be dealt with. One other report based on clinical experiences with known donation comes from Saunders and Garner (1996). These writers report on two case studies of known egg donation, out of the 20 cases performed at their clinic, describing unresolved and ongoing problems as a result of participation in third-party reproduction. In one case a known donor (sister) insisted the couple discard embryos formed with her eggs after a successful pregnancy by the recipient led to a perception of lack of recognition on the part of the donor. The second case again reflects feelings of letdown on the part of the 38 donor. In this instance the recipient denied that donation occurred resulting in feelings of anger in the donor's husband. These researchers had previously advocated the use of known donors to make up for the dearth of available anonymous sources. Upon hearing of these experiences the researchers suggest that if the known donor option is pursued, then care must be taken to provide adequate counselling and long-term follow-up. This study attempted to provide long-term follow-up in an empirical manner, so that the experiences of known egg donors could inform those involved, or contemplating involvement, in the practice of known egg donation procedures. Further to these reports are the general comments found in the research of several of the studies previously reviewed in this chapter. Speculations have been made into the possibility that participation in known egg donation may impact the donor-recipient relationships negatively. For instance, Baetens and colleagues (2000) allude to the possibility that known donation may cause the recipient to harbor negative feelings of indebtedness to the donor and possibly make it difficult for the recipients to construct their own parental status. These authors also contend that openness in known donation situations "might upset ongoing relationships in recipient and donor families" (p.482). Bertrand-Servais, Letur-Konirsch, Raoul-Duval, and Frydman (1991) allege that known donation is problematic for the participants due to the pitfalls of openness. These writers state that even if recipients plan to tell their child the means by which they were conceived, the preference is to ignore the identity of the biological mother to avoid "the fantasy of child claims by the donor... anonymity also protects against the fantasy of the husband's adultery" (p.877). It is clear that fears of "complications" are rampant among some researchers. Thus an exploration of how these ongoing recipient-donor 39 relationships are negotiated will be important in illuminating the actual post-donation outcomes associated with known egg donation. In contrast Sauer and Paulson (1992) state that in their clinical experiences with known donation they have yet to witness any difficulties in the relationships between donors and the children produced by their donation. Since no evidence of possessiveness, loss, or grief were reported or observed, these authors believe that the donors they have been in contact with appear to possess a "desirable level of emotional detachment from the resulting offspring. However, long term follow up will be necessary to define these relationships over time" (p. 728). In addition, Ahuja and colleagues (1997) comment that counselling was important for donors and recipients and due to the provision of counselling "there were no instances of 'shattered lives' after treatment" (p.2845). Clearly there is a great diversity of experiences with known donation procedures. This field of literature would certainly benefit from empirical studies investigating the post-donation experiences of known egg donors. In sum, it appears that there is a large gap in the literature regarding the post-donation implications/outcomes of participating in known egg donation. This seems a particularly important piece of information when one considers that legislation enforcing who may act as an egg donor is being considered in Canada. In the proposed study, unstructured interviews were utilized to present a more complete and detailed description of the experience of women whose donation of eggs to a friend or family member has resulted in the birth of a child/children. Due to the potential for more complicated relationships between donors and recipients when a child is born of the donation, it seemed especially relevant to interview donors who have had successful 40 donation outcomes, and thus are negotiating these ongoing relationships. Are the fears expressed by some researchers merely fantastical imaginings or is there some truth behind them? Are known egg donors sufficiently "detached" from any musings of parental responsibility? It was hoped that the descriptions obtained from the interviews conducted for this study would address some of the gaps in knowledge we have regarding the post-donation outcomes of known egg donation from the donors' perspective and thereby inform counsellors, future known donation participants, and policy-makers. 41 CHAPTER THREE Method To date, the research on third party reproduction has focused primarily on the recipient couple. Studies that have looked at the egg donor have mainly assessed anonymous donation, and particularly pre-donation variables such as the motivation and attitudes of the donor. A small number of these studies have included known donors in their samples, and thus we know something about the pre-donation and medical experiences of these women. However, there has not been any research done about the post-donation experiences of known egg donors especially in cases where their donation has resulted in the birth of a child. Thus the goal of this research was to explore and describe the meaning of the experiences of women whose donation of eggs to a friend or family member has resulted in the creation of a life. In particular, I was interested in learning more about how egg donors negotiate their ongoing relationships with the different parties involved: the recipient couple, the resultant child, and their own families and friends. A qualitative approach to this study seemed most appropriate due to the subject matter, the goals of the study, and the lack of empirical research in this area. First, the quality of relationships between people is a notion that does not easily lend itself to quantification. It is difficult to assign numbers or perform statistical operations on the experience of relating to others. Second, the proposed study seeks to explore the experiences of known egg donors in an attempt to learn about the post-donation issues and implications resulting from choosing to participate in this type of third-party reproduction. The goal of this study was exploration and description as opposed to 42 discovering facts and generating theories. In addition, this topic has not been previously investigated thus variables that can be quantitatively studied have yet to be elucidated. A qualitative methodology allowing for thorough description and exploration of this subject matter therefore seemed to be an appropriate first step. Qualitative research investigates "the meanings, concepts, definitions, characteristics, metaphors, symbols and descriptions of things" (Berg, 1995, p.3) in an effort to understand their essence and ambience. The techniques used in qualitative research provide researchers with the possibility of understanding the perspectives and experiences of others, including how they experience and make sense of themselves and their world (Berg). In addition, Seale (1999) comments that qualitative methods improve our understanding of others by giving a voice to people who dwell in the hidden or unknown parts of our social world. Qualitative study of third-party reproduction therefore seems appropriate, as participants do not typically announce involvement in egg donation to the world, and therefore the world has little knowledge as to what participation in egg donor assisted conception entails and the short and long-term consequences for the donor, of this genetic gift. The proposed study will seek to answer the question: What are the meanings of the experiences of women whose egg donation to a family member or friend has resulted in the birth of a child or children? To investigate this question through qualitative means, I decided to use a narrative research approach. Josselson (1999) describes narrative research as a process of inquiry that flows from "a question about a person's inner, subjective reality, and, in particular, how a person makes meaning of some aspect of his or her experience" (p.x). Access to the inner world of others is most 43 easily achieved through the stories that individuals present about their lives and their experienced reality (Lieblich, Tuval-Mashiach, & Zilber, 1998). Telling stories about our experiences is a universal human pastime, used throughout the life span by members of all social backgrounds and settings (Riessman, 1993). A narrative research approach takes these stories as the object of investigation, "the purpose is to see how respondents in interviews impose order on the flow of experience to make sense of events and actions in their lives" (Riessman, p.2). Unstructured, audio-taped interviews were used to elicit narrative accounts from egg donors, as it has been recognized that people tell stories about their lives in open interviews, often speaking at length when given the opportunity (Kvale, 1996; Riessman). In addition, using an unstructured interview allows participants to share their experiences in detail (Kvale). After participants shared their stories, I transcribed the interviews and developed personal narratives for each respondent. The participants were asked to review the resulting personal narratives to assure that I interpreted their experiences accurately. These stories were then further analyzed by reading across the individual narratives for common themes. These common themes were also given back to the study participants to ensure they resonated with their experience of participating in known egg donation. It was my hope that detailed narrative accounts of the meaning of the experience of being a known egg donor would serve to shed light on the issues that need to be carefully considered for potential egg donors, counsellors, and for policy makers. Narrative Theory In his discussion of the origin of narrative psychology Sarbin (1986) describes an epistemological dissatisfaction within the field of psychology during the mid 1970s. 44 Positivist assumptions of a single objective reality with a set of truths that could be discovered through scientific enquiry proved to be limiting to the understanding of social life (Riessman, 1993). Rather, the narrative as the organizing principle for human action began to be embraced by leading scholars (Riessman; Sarbin). Narrative psychology, in contrast to its positivistic counterparts, advocates pluralism, relativism and subjectivity (Lieblich et al, 1998). It is believed that instead of a single tangible reality there are multiple constructed realities (Seale, 1999). Narrative psychology recognizes the subjective reality and validity of an individual's experiences. In addition, narrative psychology recognizes the urriversality of the expression and meanmg-making of an individual's experiences through the use of storytelling (Lieblich et al.; Reason & Hawkins, 1988; Riessman; Sarbin). To emphasize this point Sarbin proposed the narratory principle: "human beings think, perceive, imagine, and make moral choices according to narrative structures" (p.8). He contends that narratives not only allow for a way of organizing episodes, actions, and experiences, but also for the inclusion of the narrator's reasoning for the acts and their causes. In this way narratives are seen as "essential meaning-making structures" (Riessman, p.4). According to Riessman (1993) narrative research and analysis is well suited to studies of subjectivity and identity. Personal narratives are valued because of their subjectivity: the presence of time, place, personal experience and an individual's unique perspective are all considered important to our understanding of the individuals studied (Riessman). Human agency and imagination are given prominence because narrative research is concerned with how individuals interpret things (Riessman). This study sought to explore and describe the subjective meaning of the experience of participating 45 in known egg donation from the donors' perspective. Participants' subjectivity was considered important in understanding how this experience influenced the donors' relationships with the important people in their lives, including the recipient and the child born from the donation. In addition, a narrative research approach seemed to be the most appropriate qualitative method for this investigation because of the dearth of empirical and theoretical knowledge that exists regarding the post-donation implications and issues arising from the donation one's eggs to help a family member or friend to have a child. It seemed important to obtain as extensive an account of several different women's experiences as possible. Eliciting narratives from several participants would allow for both the inclusion of individual stories of the known egg donation experience as well as shared/common meanings and experiences. A narrative analysis therefore seemed to be a best first attempt at exploring and describing the personal stories of known egg donors. The decision to utilize a specific approach to investigating a research question is a complicated one. As Lieblich and colleagues (1998) state there must be concordance between the goals of research and the method chosen to investigate the research question. I believe that concordance was reached in this study by utilizing a narrative approach to achieve the research goals of attaining exploration and description. These authors also admit that practical considerations and personal preferences impact the decision to use a particular method. There are certainly practical considerations arising from studying known egg donors. Finding women who met the criteria for participation in this study was exceedingly difficult. The number of possible participants available was very small and thus limited the choice of possible methods. Finally, my personal 46 preference for narrative methods is an important consideration. I believe that a narrative approach allowed for the fullest expression of the individual experiences of each participant as well as identification of the commonalities in their experiences, and therefore the goal of exploring and describing the meaning of the experience of being a known egg donor was attained. Role of Researcher In preparing for my role as a narrative researcher, I followed Kvale's (1996) recommendations for interviewers conducting narrative research. First, I immersed myself in the topic by reading all I could find on egg donation and visiting the many different websites geared towards participation in third party reproduction. Second, I reflected upon my interests in this topic and how I came to research a group of people with whom I am not affiliated. I am not an egg donor, nor do I believe I will ever have the opportunity to be, as my age will quickly prohibit me from candidacy as a donor. I do however, have personal experience with the crisis of infertility. After completing my first undergraduate degree I celebrated by traveling throughout Europe. I was gone for seven months, during which time I did not menstruate. Upon my return to Canada I immediately consulted my doctor. Medications to "kick-start" my cycle, were prescribed. Along with the medications, my doctor issued a warning that if they didn't work it could be due to premature menopause - meaning that it was possible I would never have children of my own. While I always maintained that I didn't want to have children, being told I couldn't unleashed a torrent of conflicting emotions within me. At 24, what did I know about what I really wanted? The following week was perhaps the longest of my life, as I contemplated what infertility would mean and what sorts of 47 options I might have. Fortunately the medications worked and I didn't have to deal with the difficult emotions stirred up by my "crisis". However, I was left with a deep compassion for those dealing with the crisis of infertility on a more permanent basis. This experience and the experiences of people close to me in dealing with unplanned pregnancies, have left me with a strong interest in women's reproductive health issues. I strongly believe that women have the right to decide how, when, and whether they have children. It is this interest in reproductive health issues that led me to become familiar with third-party reproduction and thus egg donors. Finally in an attempt to further locate myself in reference to my research, I attempted to state my presumptions and personal beliefs so they didn't covertly influence the interview process. The term reflexive bracketing describes the process of being aware of one's personal feelings and preconceptions in order to allow energies to be spent trying to understand the effects of one's experiences rather than engaging in futile attempts to eliminate them (Ahern, 1999). As suggested by Ahern, I kept a reflexive journal in which I wrote down issues, values and feelings that might have impinged upon my research. To begin, I gave careful thought and reflection to the assumptions I held about those choosing to become known egg donors. First, I assumed that donors have close relationships with their recipients. This is based on the fact that donors must undergo an arduous process in order to help their recipients. Second, I assumed that donors would remain in contact with the recipient following the conception and birth of the child produced from the donation. This assumption follows from the first assumption, in that a close relationship between the donor and recipient likely means they have contact with 48 each other. I believe the donor will expect this contact to continue after her donation. Finally, I assume that participation in third-party reproduction complicates and affects (to differing extents) the relationships of all parties with each other and the resulting child. I believe this depends upon the importance the donor, recipient, and those close to them assign to the role of genetics, gestation, and social parenting. I also wished to address my bias toward helping family members or friends. In discussing my research with my own friends and family a consensus was reached among us that we would all donate our eggs if one of us could not (but wanted to) conceive a child. I have two sisters with whom I have a very close relationship, and I could easily envision helping them in this capacity. I could also imagine that the child conceived and born from that donation would likely be my favorite niece or nephew. I think that it would be impossible for me not to look for elements of myself in that child. I'm not sure to what extent, or even if, this would influence or change my relationship with my sister. It's very difficult to put myself in that place, and perhaps the point is moot, in that pre-donation counselling might indicate I shouldn't donate if I have trouble making the distinction between my egg as an 'organ' and the child born from the donation. I hoped my curiosity about how others deal with this life event and their experiences following donation would allow me to approach each interview with my own assumptions and biases clearly defined and therefore not covertly influencing the story of the participant. R o l e o f P a r t i c i p a n t s In investigating the meaning of the experience of known egg donors following their donation, and the subsequent conception and birth of the resulting child, it was necessary that participants met certain criteria for inclusion in this study. First, 49 participants had all taken part in the egg donation program at Genesis Fertility Centre, donating their eggs to a friend or family member. Each potential participant had returned a questionnaire to Dr. Judith Daniluk, a clinical consultant at Genesis, stating that she agreed to be contacted for future research about her donation experience. As this population is difficult to access due to privacy issues, drawing from previously studied Genesis Fertility Centre donors who had agreed to be contacted for research purposes and long-term follow-up, yields a purposeful and convenient sample. Since secrecy is a well-established characteristic of third-party reproduction, the potentially lengthy and difficult process of advertising for participants is avoided by using these donors. Second, the women had a successful donation experience, meaning their donation to a friend or family member resulted in a live birth. Meeting this criteria allowed the researcher to explore the ongoing relationship between the donor and recipient, as well as affording the researcher a rare glimpse at the nature and extent of the contact between donors and the offspring produced as a consequence of their donation. The final criteria for participants, was that they possess the ability to communicate about their experiences articulately and in detail. This meant participation was restricted to women who are able to communicate in English. It was my hope that the women would gain some insight and awareness regarding their experiences as known donors, in addition to providing me with information about their post-donation lives. 50 My assumptions in choosing to use a narrative research approach included the belief that reality is subjective and that meaning is derived from our own personal views of what is real. I approached this study with a belief that I would be reporting a constructed reality, that narrative accounts are not representations of an objective reality. As Riessman (1993) asserts, the stories participants tell do not mirror the world, instead they are "constructed, creatively authored, rhetorical, replete with assumptions, and interpretive" (p. 5). Narrative accounts are co-created by the interviewer and the interviewee, meaning that the narrative account resulting from the interview is merely the researcher's interpretation of their narrative account of the participant's experiences (Riessman). However, to address the concern of accuracy in representation, research participants were asked to play a role in validating the research findings. In an effort to ensure that my interpretation of participants' experiences were accurate, I provided the participants with a copy of the narrative account I developed from their individual interview and a list of the common elements gleaned from an across narratives analysis. The women were then invited to comment on and verify the accuracy of my interpretation of their narrative accounts and whether the common elements resonated with them and reflected their experiences. In this way, Riessman's criteria of correspondence or trustworthiness of the data was addressed. Procedure Recruitment Letters were sent to the women egg donors who returned questionnaires to Dr. Daniluk, related to their medical donation experiences, indicating their willingness to be contacted for future research. In this initial contact letter I introduced myself and 51 discussed the nature of the study (see Appendix A). I briefly described the procedure and invited any interested women to contact me to discuss the study further, and if interested to set up an interview time. Of the twelve women indicating agreement to be contacted for future research, six had donations resulting in a pregnancy and birth of a child. I hoped that as many of these women as possible, would agree to participate in my study. I felt that interviews with five or more egg donors, would provide a rich description of the post-donation lives and experiences. Al l women donating their eggs through the Genesis Fertility Centre's program receive one hour of pre-donation counselling. Thus participants in this study have had a counselling session in which issues of secrecy and disclosure, as well as boundaries and the emotional consequences of their donation were discussed As it turned out secrecy and confidentiality was an important issue for the prospective participants in this study. I did not receive any responses to my letter, and because I was not an employee of Genesis Fertility Centre, I did not have access to the women's addresses and phone numbers and therefore could not follow up to see if the letters were received. Thus it was decided after discussion with my supervisor, Dr. Daniluk, that the prospective participants would be telephoned by Dr. Daniluk as she had a previous relationship with them and was an employee of Genesis Fertility Centre. During these telephone calls Dr. Daniluk was informed by at least one of the women that her recipient did not wish her to take part in the study. One other woman reiterated her need for absolute anonymity, stating that the only way she would agree to participate would be if it could be via telephone under a pseudonym. In addition, one other woman living in another province agreed to participate if the interview could be conducted over 52 the telephone, so the method was therefore altered to allow for telephone interviews. Under such circumstances three women agreed to participate in the study. Al l three of the women donated eggs to a family member, specifically their sister. The Interview Interviews were conducted over the telephone at a time agreed upon by the participant and Dr. Daniluk. I conducted all of the interviews from my home, using a recording device that attached to the telephone receiver. To maximize consistency between interviews, each interview began with casual conversation to establish empathic rapport, followed by a discussion of confidentiality issues and what participation in the study would entail. Both Riessman (1993) and Kvale (1996) emphasize the importance of building rapport with each participant in an effort to encourage a detailed account of their stories. Throughout the interviewing process, I employed empathy, perception checking, paraphrasing and clarification, along with other basic interviewing skills. I believe this ensured creation of an environment conducive to sharing - one which was warm, non-judgemental and safe so that the women felt free to openly tell their stories. Prior to beginning the data collection, participants were told they would be sent two copies of the consent form (see Appendix B), and were asked to read, sign and return one of the copies to me, keeping the other copy for their own records. At that time I reminded participants that participation was voluntary and that they had the freedom to withdraw from the study at any time. Participants were asked if they had any questions they would like answered, and were encouraged to ask questions whenever they arose. Each woman was asked to choose a pseudonym to be used throughout the research documentation in order to maintain confidentiality. Also, I reminded 53 participants that the interviews were being audio-taped to limit the need for note-taking and to allow for a more faithful representation of their experiences. Upon conclusion of the discussion of confidentiality and the research process, I asked the participants to begin telling their stories when they felt ready. I instructed them to view their experience of participating in egg donation as a story with a beginning, middle and end. The beginning was tentatively drawn as the point at which the women began to consider donating their eggs. The end was considered to be the future, projected by the women, for everyone involved in the donor-assisted conception. The interviews were largely unstructured, with a series of open-ended questions designed to cover the relevant themes discussed in the literature (see Appendix D). The questions and probes were designed to elucidate the post-donation experiences of each woman, including their feelings about the donation and perceptions of how they have negotiated their relationships with their recipients, their own families and the resulting offspring. By remaining fully present and attending to verbal and non-verbal cues (such as tone of voice and silence) I tried to help the participants deliver a detailed and deep account of their experience. The interviews ranged from 65-90 minutes in length. At the completion of the interview participants were reminded that they would be sent the results in the form of a narrative account based on our telephone conversation, and a detailed list of common elements gleaned from all of the narratives, along with the two copies of the consent form as mentioned earlier. Participants were provided two copies each of the narrative account and common elements, one to keep for their own records and one which they were free to write feedback in the form of corrections, additions, deletions, and comments upon. An envelope stamped and addressed to me 54 was provided so that these comments could be sent to me and incorporated into the final report. Data Analysis I chose to read, interpret and analyze the data obtained using a modified holistic-content perspective (Lieblich et al., 1998). "A holistic-content mode of reading uses the complete life story of an individual and focuses on the content presented in it" (p. 13). In this perspective, the researcher analyzes the meaning of the parts of the narrative in the light of content that emerges from the rest of the narrative or in the context of the story as a whole. The decision was made to analyze the data using a holistic-content perspective due to the association of this approach with the tradition of case study designs. This point of view allows for a broad perspective of the general themes and emerging foci within the stories of each participant thereby preserving the unique features of each personal narrative without requiring emphasis on common elements and themes. The first step toward analyzing the data was to transcribe the audio-taped interviews. I had intended transcription to follow a process similar to that outlined by Poland (1995). I wished to include a verbatim account of the audio-taped words; an indication of nonverbal responses and cues such as body language, tone of voice, pauses and silences; contextual information; and my observation notes, which were to include all of the thoughts and feelings that occurred to me during the interviews. I made brief notes of these thoughts and feelings during the interview, expanding upon them and adding a summary of my impressions of the interview at its completion. Unfortunately much of the non-verbal cues I wished to include were not available to me since 55 interviews were conducted over the telephone. In addition, the quality of the recording was not very good, in fact the level of the recording was so low at some points that it required listening to certain sections many times just to get an accurate verbatim account. In the end the interview transcripts were verbatim accounts with pauses, silences, and changes in voice tone indicated (where this was audible) along with a commentary detailing my observations and reactions at the end of each narrative. Development of the narratives from the transcribed interviews was the next step. I chose to write the narratives as third-person accounts. The decision to write third-person accounts over first-person accounts was made for a couple of reasons. First, the women who participated in the study were not known to me previous to our telephone conversation. After only one conversation I did not feel I had enough of a sense of who the women were as individuals to justify appropriating their voices. I believed that I didn't have enough knowledge of their experiences to present their stories as if they had wrote them themselves. Second, the interviews were conducted over the telephone, this meant that I was already constructing a picture of who they were in my imagination, I therefore wanted to make it clear that the narratives were my constructions and not give the impression that they were creations of the participants. The process of writing the narratives was a lengthy and challenging task. Kvale (1996) states that people convey their stories in a non-linear fashion with limited chronology resulting in the need to restructure and clarify the data obtained from the interview. To achieve this, each transcipt was analyzed by reading several times with an eye for content, temporal sequence, and for the meaning of the experience, and implications of the donation. After reading the transcripts several times, I attempted to 56 write a chronologically ordered and coherent narrative account of the participants' experiences of being an egg donor and living with the consequences of her choice when treatment has resulted in the birth of a child or children. Because the narrative accounts I wrote were my interpretations of each participant's story, I attempted to include, as much as possible, each participants original choice of wording and the tone with which they presented their stories. To ensure my interpretation of the experiences of the women was accurate, I consulted each participant for feedback. Member checks were utilized to ensure I accurately represented their experiences. As an example of the feedback from the participants, Lola wrote: "you did an excellent job of telling the story accurately- very true to my words. Thank you for including me in the study- it's great to have it all written down." Production of the narrative accounts constituted the first level of analysis. The second level of analysis was the reduction and interpretation of the narrative accounts. An across-narratives analysis was done to identify common elements shared by all of the women who participated in the study. Following Lieblich and colleagues (1998) description of the method for analyzing from the holistic-content perspective, themes were decided upon for each personal narrative and were followed throughout the story as they evolved from the beginning to the end. The themes were determined by the frequency and space devoted to the theme in the text, the repetitive nature of the theme and the number of details the participant provided about it. Colored markers will be used to mark the various themes in the story. Comparisons were then made across narratives in the hope of identifying common elements to the experience of participating 57 in known egg donation. My supervisor, Dr. Daniluk, reviewed the common elements that emerged to ensure they accurately represented the participants' experiences. Criteria for Evaluation of the Worth of the Study Narrative research, like all research, must meet certain criteria in order to be evaluated as a worthy contribution to the field it attempts to inform. Lieblich and colleagues (1998) contend that the standard criteria of validity, reliability, and replicability used in evaluating quantitative research do not apply to the narrative approach. Narrative materials- like reality itself- can be read, understood, and analyzed in extremely diverse ways, and that reaching alternative narrative accounts is by no means an indication of inadequate scholarship but a manifestation of the wealth of such material and the range of sensitivities of different readers (Lieblich et al, p.171). Still, it is necessary to establish criteria for evaluating narrative research and several authors have attempted to do just that (see discussion in Lieblich et al., 1998; & Riessman, 1993). To address the quality of qualitative research Riessman (1993) proposes several "ways of approaching validation in narrative work" (p.65). The first of her four criteria is persuasiveness. Persuasiveness or plausibility is achieved when interpretations made by the researcher are reasonable and convincing. "Persuasiveness is greatest when theoretical claims are supported with evidence from informants' accounts and when alternative interpretations of the data are considered" (p.65). To ensure persuasiveness was reached in this study I had the research findings reviewed by my supervisor, Dr. Daniluk. Because Dr. Daniluk has many years experience 58 counselling individuals wishing to participate in third-party reproduction I believed her expertise would allow her to evaluate for this criterion. Riessman's second way of approaching validity in narrative research is through correspondence. Correspondence is accomplished through member checks. Taking back the findings to those studied allows for assurance that the researcher's construction of the narrative is an adequate representation of the participant's experiences. Riessman maintains that member checks not only allow us to find out what participants think of our work, a frequent source of theoretical insight, but are politically important in that the dialogue generated can mean the study's afterlife is just as important as the research process itself. Cautions about member checks' abilities to affirm the validity of the researcher's interpretations are also made, in that not only do stories continually evolve and change over time, but individuals are attached to their narratives. In the end, Riessman asserts that the narratives are owned by the authors (or researchers) and as such we must take responsibility for its truths. The third criterion cited by Riessman (1993) is coherence. Three types of coherence are posited: global (the beliefs and goals of the narrative), local (the structure of the narrative itself), and themal (the content of the narrative- the existence of recurrent themes that unify the text) (Agar & Hobbs, as cited in Riessman). When coherence is "thick" or relating to all three levels, then the interpretation is seen as more than merely ad hoc. Lastly the criterion of pragmatic use, involves the extent to which the research informs future work. This validation criterion "is future oriented, collective, and assumes the socially constructed nature of science" (Riessman, 1993, p.69). In order to 59 assure other investigators of the validity of our narrative analysis Riessman suggests: describing how the interpretations are produced; making what we did visible; specifying how transformations of the data were accomplished; and making primary data available to other researchers. To address this criterion it is hoped that the results of this study will inform future pre-donation counselling and pohcy-making decisions once it is written and published in a more concise version. Though other standards for evaluating the criteria of narrative analysis exist (see Lieblich et al, 1998), I have chosen to address the worth of the proposed study using Riessman's four criteria for approaching validity. In addition, I recognize that validation, like analysis, is interpretive work that is ongoing and never completely finished. 60 CHAPTER IV Results Introduction Three women who donated their eggs to help their sisters conceive, carry and give birth to a child were interviewed to learn more about their experience of egg i donation. The intent of this study was to provide follow-up information on the post-donation experiences of known egg donors, an area of the literature that has been largely neglected. Narrative accounts of the experience of donating eggs to a family member were developed based on interviews with three women egg donors. These accounts were then analyzed to identify common elements related to the experience of known egg donation. Both the narrative account and the common elements were given to the participants to ensure correspondence. All participants perceived the accounts to be accurate renditions of their donation story and felt the common elements were indicative of their experience. In this chapter, I will present the narratives of the three women, then I will introduce the common elements gleaned from the narrative accounts, followed by a more thorough detailing of the common elements with supporting quotations from the participants' interviews. The Narratives The three women interviewed for this study chose pseudonyms by which they would be identified throughout the rest of this thesis. What follows is the narrative accounts I composed based on the interviews I had with each of the women. In writing these narratives I tried use the participants' own words as much as possible. The narratives are presented in no particular order. 61 JR's Narrative The Decision JR was 34 years old when she donated an egg to her older sister Annie. Although Annie had married before her, JR became pregnant and built her family first. She watched Annie try to conceive a child for years. Medications to "pump her for eggs" and several cycles of in vitro all had no effect. It was hard for JR to watch the disappointment and depression Annie went through with every failure, because JR knew Annie had always wanted children, ever since childhood. The sisters grew up very close despite a three and a half year age difference. This close relationship continued into their adult years, and though they didn't live in the same city they talked on the telephone everyday, sometimes even twice a day: "She's the one I call in times of joy and in times of sorrow" said JR. So when Annie told JR that she was convinced her eggs could not be fertilized and that she and her husband made the decision not to spend any more money trying to conceive, JR offered to donate her eggs to her sister. "I'd even go so far as to be a surrogate mother if you can't carry a child" JR had said "Talk it over with your husband and let me know." It was probably a year later that JR, Annie, and their partners sat down to discuss egg donation seriously. JR's husband wasn't sure about it at first. He was concerned about the child being partly hers, but when JR explained that "you could never say that it was my child" because she would never carry the child or give birth to the child, he came to a place where he was completely fine with it. For JR the concept of parenthood was settled by the fact that she and her sister shared their genetics anyway. The evidence of this was seen every time she looked at her son, who coincidentally was 62 missing a couple of teeth just like Annie. The issue of parenthood was never a real concern for her, she knew that she and her sister were so similar, their genetics were so linked, and Annie would be carrying and giving birth to the baby, which for JR meant Annie would be the parent. After everyone agreed to go ahead with the donation procedure, but before they had set a plan for a time frame, JR found out she was pregnant "by sheer accident." She miscarried at six weeks and went through a very hard time in which she experienced a lot of emotions and difficulties. Aside from acknowledging that there was obviously not something right with the embryo, JR was struck by the realization that these feelings of sadness and disappointment must be similar to what women who try to get pregnant but can't, must go through. She could relate to the hope and anticipation of a pregnancy dashed, and thought "if I can do this for her after knowing what it felt like, then hopefully it will work and they'll experience parenting their own child." JR called it her gift of love. After Annie confirmed that JR truly did not want any more children, they decided to set a time to go to the clinic and meet the doctors. They had a session with the counsellor where they discussed the donation thoroughly. JR was surprised by the counselling session, as it simplified things for her instead of making them more complicated. For JR the session solidified things. They discussed when to tell the child and what to tell the child and the whole matter-of-fact approach helped simplify matters for her. Disclosure was an important part of the discussion in the counselling session. It was agreed that Annie would not only tell the child, but also her husband's family would need to be told at some point. JR's family had been told early on and were very 63 supportive, but it seemed that Annie and her husband had a difficult time deciding when and how to tell his family since "they weren't as open to this sort of thing." This was the one thing JR was not quite happy with, as she truly believed her sister and brother-in-law felt the same way she did, that what they were doing was a wonderful thing and they didn't need to hide it like it was something wrong. But she could understand that they were probably not quite ready for what his family's reaction might be. The Donation JR was terribly excited about donating an egg to her sister. She thought it was great they would be going ahead and starting the procedure. She didn't really have any concerns about participating in egg donation, though initially the health risks did pop into her mind. JR thought that although the medications "make you susceptible to cancer... I know women that have been for in vitro several times and I thought I'm only going to do this once." Besides she reasoned, "the benefits or end results far outweigh the supposed risks." So they began the procedure of getting their cycles into sync, and JR who was "not that hip on needles" thought to herself "I can do this." Since Annie could not stay with her the whole time and give her the injections, she gathered all her supplies and gave herself the needles. The time came for her first ultrasound and the doctor noted that her follicles weren't developing fast enough, and increased her medications. Up until this point JR felt so positive about the outcome of the procedure- "at no point had doubt ever entered my mind and then all of a sudden I thought, oh my god what if it doesn't work?" In fact, she became really worried but "of course I didn't tell her anything." 64 JR masked the nervousness in her characteristic way with humour. To this day she laughs a lot when she gets nervous, leading everyone to believe things are great. Her mother even commented that JR was so funny and had such a great sense of humor during the procedure, while JR confessed it was actually because she was nervously filled with anticipation and hope that it would work. Aside from a couple of headaches, JR made it through the medical procedures without any major side-effects. The only part of the procedure she found disappointing was not being able to access clinic staff whenever she needed to talk to someone or ask a question. She anticipated a lot of support and feedback from them, and instead had to rely on the faith they knew what they were doing with medication dosages and getting the timing right. The sisters and their partners discussed what would happen if the procedure wasn't a success the first time. Disagreement was evident as Annie was not willing to let JR take the drugs again, and JR's husband was a little 'iffy' about how time consuming and emotional the process was, but JR was adamant that they would do it again. They were lucky though and "all that didn't matter because it worked the first time." The Pregnancy JR's donation yielded nine eggs, four of which were fertilized and two that were implanted in Annie. They had a little celebration following the procedure before JR returned home. During the pregnancy JR and her sister continued their daily phone calls. Finally the day came for Annie to return to the clinic for an ultrasound and tests that confirmed she was pregnant. They had a big celebration about that, and JR felt the excitement mount as each day passed. Once the first three months were over she was 65 overjoyed, and could think with relief "it's going to stick and it's going to be ok." JR remembered feeling nervous as she was very concerned about her sister's emotional state. She was unsure how Annie would have handled it if the pregnancy wasn't j successful. JR remembers that after the first trimester mark was passed, she experienced an emotional period where the 'what-ifs' of their ordeal were finally considered. In her words: "you could think, oh my gosh there were so many times during the procedure that it may have ended then, maybe I couldn't have produced any follicles or maybe none of them got fertilized..." Worries over the success of the procedure were her only fears at the time. She recalled that her thought process did not include worries over "what she was going to do with this child that's partly hers." The pregnancy itself was a fun time for JR who knew from her own experience what it was like to be pregnant. Because they only lived a couple of hours away from each other at the time, JR and Annie saw each other about once every couple of months and so JR was able to enjoy the pregnancy experience with her sister. Fate seemed to be on their side as Annie, despite previous health concerns, felt great and full of energy. For JR this confirmed that it was really meant to be. As the time for her sister to give birth drew near JR's excitement grew "What would it be?" she thought. An inability to turn the breach positioning of the large baby caused a caesarian section to be scheduled. Annie called JR with the information but JR couldn't be there until the following day. She flew in to see her sister, helped her get settled at home and did things around the house. JR was able to stay for three days and was grateful she could reassure her sister that all of the things she was experiencing were normal, including the hard time 66 she was having breastfeeding. Having had difficulties her first time nursing, JR was able to let her sister know that "it's not as natural as they say." Feelings of joy and amazement filled JR. Her tiny 5'4" sister gave birth to a 91b 6oz boy! Though she thought it was crazy she still couldn't help but wonder "will he look like me?" When her sister said "he's got the back of your neck", JR chalked it up to Annie's excitement at being a parent. Given their special relationship, which was full of love, JR truly believed the comment was a product of her overjoyed sister wishing to show her love. Despite her ability to disregard her sister's comment, JR knew she would always have similar thoughts. She already felt a special bond with this child that she knew would always be there. She also knew for sure that it wasn't a maternal bond, because she just didn't have those feelings at all. She found the whole idea of the baby being her child ridiculous. In her words: "It's just like adoption, if you're never with your biological parents then you cannot call them your parents." It was, and continues to be, black and white in her mind who the parents are. The Consequences JR anticipated that her relationship with Annie would continue in the same way, that they would keep being close and calling each other often. So far that is exactly what is happening as she has watched her nephew grow up for the last two years and receives daily updates on his progress from her sister. In her view, JR is just his aunt and he is just her nephew. "I don't look at him any differently than the others," she says. If there is a difference in the way she feels about him compared to her other nieces and nephews JR believes it's only because he is her only blood related nephew and "if I had another blood relative that was a nephew I could probably compare it, you're always closer to 67 blood." The fact that she has more contact with her nephew also makes it difficult to make a comparison because she says in reference to her other nieces and nephews, "I love them all to pieces, I just don't get to see them all that much." Living with the fact that the egg she donated to her sister has resulted in a child has been relatively trouble-free for JR. She feels that there are only a couple of things that make her uncomfortable or cause her to worry. The first is that she really wanted to offer to donate her eggs again, but when she told her husband he said no. Since her sister and brother-in-law had not asked her to donate again JR thought: "I had to honor his feelings because it wasn't what was promised anyway- they certainly didn't ask." For JR this thwarted desire was the only other troublesome thing, aside from her discomfort that Annie and her husband had yet to tell his side of the family about her nephew's conception. JR and her mom discussed the need to disclose to her brother-in-law's family, and they feel his family should be told, but they understand that it's not for them to say. JR says her family talks about the donation but really more from the standpoint of "can you believe it worked, that she has a child?" Disclosure to others has been handled with a great amount of respect. All of the people JR has told were first cleared by Annie. In almost all of the cases their reactions were positive. "They were excited, they thought it was great" JR related. Only one person said to her that he was her child, to which JR simply disagreed. In her mind the fact that they are sisters means it is so close to her sister having her own child "it's the same genetically." JR's sister and brother-in-law, as well as JR and her husband, plan to tell their children the story of her nephew's conception. JR plans to wait until Annie tells her son 68 before she tells her kids. She knows that nothing her son and daughter say or do will change her feelings for them, but she wonders how they will react. She thinks that as they grow older they may become more inquisitive. Right now though, she is amazed with how well the children get along with her nephew. She can't help but wonder if kids are so "supersensitive that they really feel like they know each other." She recognizes, however, that the connection probably has more to do with the fact that they are fairly close in age. When her sister tells her nephew how he was conceived, JR prays he comes through it with a real positive attitude. Her biggest fear is that during his adolescence when his hormones are haywire and all of those questions come up, he won't understand that it was a gift of love- that he wouldn't be her son but that he is her sister's son: "His mom couldn't use her eggs cause they weren't healthy enough, so she just borrowed one of mine." She hopes he sees "that's the way it is, matter-of-fact," and is positive about it. Other than this worry, JR cannot fathom any difficulties or stumbling blocks in the future. She especially believes things with her sister will be fine. "I don't anticipate any hardships or problems," she says. Even if her nephew's reaction isn't as positive as she hopes, she thinks that disclosure is for the best because to not tell implies that something is wrong with what they all did to bring about his conception: "it's a far better way to do it than to not tell him. That seems like it's something wrong and it's not." JR feels that donating her eggs to her sister has enhanced her life. She is understandably proud of course, "but I'm just so thankful that I was able to give her the ability to have a child. It's a pretty giving act, and I feel like it's the least I could do for 69 the love that she has shown me her whole life. It's not that I'm repaying her, but a gift that I could give to her. So it feels really good." Both she and her husband enjoy watching her sister with her son "they're inseparable." And though they both can't help but look for similarities between JR and their nephew, they realize a lot of those traits can be attributed to his father. "There is some resemblance, he's got blonde hair and I've got blonde hair. But her husband had very blonde hair when he was little and so it could be linked to his side." She also thinks that she and her brother-in-law have very similar personalities so that anything like that could also be from him. And although she and her brother-in-law have always gotten along well, she thinks they are more open now. JR concluded that, "We were very lucky it all turned out, and the support we had from our family and the relationship we have... If I didn't have that relationship, I don't think that I would have offered to have done it in the first place." She feels "it's such a pleasure to see someone enjoying a child who couldn't have one." It makes her feel great knowing that Annie and her husband are such fabulous parents. 70 Mary's Narrative The Decision They were sitting at their mom's over lunch when 33 year old Mary's younger sister Dana mentioned that there was an alternate route she and her husband could take to try and have children. Dana had terminated two pregnancies due to Down's Syndrome and wasn't up to doing so a third time. She told Mary the alternative was to go through an egg donor clinic. Without a second thought Mary spoke up and said she'd do it, she'd volunteer her services as an egg donor. Dana and her husband weren't quite sure what to make of this since they had only briefly started to consider it and none of them, not Mary, Dana or their husbands, knew the full extent of what was involved. So while her sister did research and read up on egg donation, Mary spoke to her husband to see what his views on it were. If he had said no, she wouldn't have done it. Not only did she need his support, but she didn't want to jeopardize their marriage. With her husband's consent Mary made the decision that this was 110 percent for sure going to happen. Mary had two children of her own and knew the joy they brought to her life. She wanted that for her sister. She and her sister were close, but not in the sense that they would tell each other their deepest secrets. The closeness was evident in the feelings of hurt Mary had thinking about her younger sister having to have two pregnancies terminated. She didn't think it was fair that she had two kids of her own, and Dana wouldn't have any for the rest of her life. If she could do something to help change that she decided she would. As Dana and her husband read up on the egg donation process, they had some concerns about whether Mary knew what she was getting into. But Mary had already 71 made her decision. She just sat on the sidelines and said "okay, well let me know when it's time." The time came and they went to the clinic and met with the psychologist, but Mary just wanted to go and do it; nobody was going to talk her out of it. She knew there was nothing greater in her life than her children, and that's how she looked at it. She says she was even willing to consider the consequences. For Dana and her husband it was a relief to have the egg come from a family member. They wanted the whole thing to be kept as private as possible. The only other people that knew were Mary and Dana's parents and Dana's husband's parents. All of them were thrilled and overwhelmed that Mary would do this for her sister and brother-in-law. The Donation Once the medical procedure began, the reality of the situation finally hit Mary. It wasn't until she actually had to start giving herself the injections in her stomach that her fears were realized. "I was scared and that's when it hit me that I actually was scared of the unknown"- the chance of ovarian cancer, the chance it wouldn't work, or worse the chance that it would, and that the child might look just like her. There was also her fear of needles and having to do the injections everyday for a month. It was a tough time for Mary. She experienced a lot of emotions which she felt unable to share with anyone. "Knowing that I had two children of my own is basically what got me through." She kept quiet about her fears, concerns, and physical distress because she didn't want her sister to know about what was going on in her mind, "I just wanted her to know the positive end." 72 The retrieval was performed and the fertilized embryos were transferred into Dana and she became pregnant, only to miscarry in her first trimester. Mary felt like somebody had taken a knife and stabbed her in the heart. "It was awful, we were in mourning, it was awful." She felt as though she had failed her sister and brother-in-law, she thought it was her fault. It actually made her angry that it didn't work. "When something doesn't work for me, no matter what it is, I go into it the second time around not 100 percent but like 150 percent." So she told Dana and her brother-in-law that they were going to do it again, guaranteeing them that this time it would work. And though her brother-in-law had doubts Mary said "we are going to do it again because this time around you're going to have a child out of it, but there won't be a third time." Once again Mary faced her fear of needles and began the medical procedures. She and her sister felt better taken care of at the clinic their second time, and Mary wondered if that extra attention made the difference. This time she produced 18 eggs, some of which were frozen by her sister and brother-in-law. T h e Pregnancy Her sister became pregnant and Mary was thrilled knowing that this time it was going to take. During the first 12 weeks of her sister's pregnancy a worried Mary phoned everyday to see how her sister was feeling. She heaved a big sigh of relief once Dana passed the first trimester. Although she was happy for her sister, the period following the donation was not a great time for Mary. The medications required for two cycles of donating took their toll on her, physically and emotionally. The after-effects were the most difficult part of the whole experience for her. She recalled it as a "year of hell," happy one minute, crying the next. It was not pleasant around her house. She felt 73 she took it out on her children and no matter what Mary's husband did, it was never right- he was as likely to get thanked as to get his head chewed off. Mary realized she was not a pleasant person to be around, so she withdrew from her family and friends. Although she spoke to her sister often on the telephone she also withdrew from her. "I just had my own feelings to deal with myself, being on the medication twice. I tried not to show her. I didn't want her knowing what I was going through and all, and now we've made it seem like I was happy and everything was going well. She has still to this day no clue." Because they wanted to keep the donation as quiet as possible, Mary felt she had no one to speak to about the things she was feeling. She just kept it inside and thinks now that "maybe that's what made it so hard." She had to go on anti-depressants to even out her moods and that in itself made her feel like a failure, "I felt I was a problem, I couldn't stand my emotions, I couldn't control them, and having to take another drug, an anti-depressant to control me, the thought of that, I didn't like that either." In reflecting back now, part of what Mary was dealing with was her fear of her sister actually carrying the pregnancy to term. As Dana got further along in her pregnancy, Mary started to get nervous. She feared it would be like looking into a mirror when she saw the children, because Dana was expecting twins. "Everyday I was sweating bullets as she got closer to her due date - what are these children going to look like, are they going to look like me?" Her worries were primarily with regard to how the public would respond. If the children looked like her, because really they were a part of her, it would be hard to hide that from the public. She was concerned that if they looked 74 like her this thing they wanted to keep private might get out. She didn't actually know how she would feel if they looked like her- at this point it was just a worry. A caesarian section was scheduled to deliver the twins because the doctors didn't want to put any stress on the infants. As the date for the delivery came close, Mary confided to her husband that she wasn't ready to see the twins. When her sister's water broke a week early and she was taken to the hospital, Mary's mother phoned to let her know. "I was afraid to walk into the hospital and had to take a moment with myself and take a deep breath. I was afraid to see them, really afraid." They brought her upstairs and she got to see the babies immediately. She was surprised by her reaction. "I did really well, I think what it was, was seeing the joy in my brother-in-law.. .he was just walking on air and when I saw them, everything went away." It was exciting to actually see them- a beautiful little boy and a beautiful little girl. The Consequences A part of Mary had always wanted to have a little girl, though she certainly didn't regret having two boys. She thought that it was probably because she had wanted a girl at one time that she looks at her niece a little differently. She looked to see if she could see a bit of herself in her. Both she and her husband find they look to see who the children resemble, but Mary isn't bothered by that, "I don't feel like I'm their mom, because I didn't carry them for nine months and I didn't birth them. Once they were born all of this kind of hit me, and I was just so overwhelmed to see my brother-in-law and my sister thrilled." Dana knew her sister had always wanted a little girl so as a tribute to her, she and her husband named their daughter the name Mary had chosen for 75 her own little girl, were she to have had one. This was a big honour for Mary- it was almost as if they were naming her after Mary. For the first while after the twins were born Mary tried to stay back and out of her sister's way. She was worried that any advice she might have about parenting would be viewed as her attempting to be controlling. "I didn't want her thinking that I felt like I should be mothering them, so I held back." She only offered advice when asked, believing that doing otherwise would be overstepping her boundaries. Mary remained tentative in her involvement for probably the first six months. After that it just sort of became established that the babies were her sister's. Mary would make comments such as "oh, he looks like his dad," or "he does this like you," or "go to your mom" and it just sort of naturally happened that her previous fears and worries disappeared. The twins were and are, just a niece and nephew to Mary, although she does feel they are a little extra special than her other niece. The reasons for this are confusing for Mary. She wonders if it's just because she has been kept very involved with whatever happens to the twins and that she doesn't get to see her other niece as often. She refers to her confusion as a mind game: "Are these guys extra special to you because they're a part of you or just because you love them to death and they're all over you more than my other one?" Her youngest son also has a very special bond with the twins. Sometimes, just every once in a while- Mary wonders if they are close because they are cousins or because they feel a brotherly and sisterly bond. After the birth of the twins, Mary has felt closer to both her brother-in-law and her sister. They share a bond and their relationships have become much deeper. But there are some things that worry her about living with the fact she donated her eggs to help her sister have the twins. The first is the concern for her health. She is afraid of getting ovarian cancer. She worries what this could mean for her children. The second fear is about disclosing the donation to her own children. Mary would rather not tell them at all, although she thinks she probably will when they're older- maybe when they are married. She worries about how they'll react: "Are they going to reject me for it or are they going to think I did a wonderful thing. Are they going to think-why did I keep it from them for all these years?" Mary knows it's not her decision alone whether she tells her children. "It has to be agreed between the four of us; my spouse, my sister and her spouse." Whether her sister should tell the twins is a question Mary finds tough to answer, although she does believe that for health reasons they should know their past medical history. As for Mary telling people, she sometimes wishes that she could share it with the whole world- not because she wants the world to acknowledge what she's done. Mary was given rather large material gifts from both Dana and her brother-in-law as well as from her parents. She feels these gifts were unnecessary because she felt the best reward was "just seeing their joy." She feels a lot of pride for what she was able to do: "You can buy people a lot of gifts, material gifts, but nothing is more rewarding than what I was able to do, give my sister a part of me so she could enjoy her life and bear children. The joy of actually feeling one grow and move and kick inside of you and then giving birth to it and then watching that little one grow." She says that she doesn't need to be thanked all of the time because it is over and done with, but knowing what she did does makes her feel good about herself. Mary doesn't anticipate any difficulties in the future. In fact she thinks it'll just be pretty much the same- that they'll continue getting closer. "We know there's a fine line and we know not to step over it. I can't see there being any problems whatsoever." And although there are still moments when she looks for a resemblance between herself and the little girl, like when her husband commented that the little one looked a bit like her, she has chalked it up to family resemblances. "My son looks a bit like my dad, it's just all family, it's all blood and that's just the way I look at it now." Though the experience had its ups and downs as all of life does, Mary thinks there were more ups than downs. She wouldn't hesitate to do it all over if she had the chance to go back. "Because the love that you give a child and that they give back to you, it's just amazing. You actually end up stopping and smelling the roses when you have children." That was what she wanted for her sister and that was what she feels she has been able to help her achieve. 78 Lola's Narrative The Decision Lola and her sister Wendy were born nine years apart, so they didn't spend a lot of time together growing up. Despite this Lola remembers the times they did spend together to be special: "the memories I have of my sister when I was young are all good. She was always really kind and very supportive of me and interested in what I did." Now they share something very unique, they have a bond that is different than the sister relationship. The reason for this unique new bond is that they experienced a wonderful adventure together: Lola donated her eggs so Wendy could bear a child. Wendy had problems with irifertility for years as Lola remembers it. They lived in different provinces and had busy lives of their own, so the sisters didn't get to see or speak to each other as frequently as they would have liked, but when they did they would talk to each other about everything. Lola was therefore aware of the irifertility difficulties and felt bad for her sister, "I mean I didn't understand why it was so easy for me and my other sister to get pregnant. What was going wrong for her?" The emotional toll was evident as Wendy dealt with feelings of being a failure and feelings of depression. On one of their rare visits, Wendy told Lola about the different options she and her husband were considering, including adopting a child from China. It was either that or something called ovum donation, Wendy had said off the cuff. Lola recalled that her sister wasn't asking her at all to donate her eggs, "not even close," so in their characteristic jesting manner Lola said "you can have some of mine because I'm not doing anything with them." Her sister laughed and responded that she would never ask Lola to do anything like that. About a year later, when it was confirmed that her eggs 79 were the cause of her fertility problems, Wendy tentatively brought up the idea of egg donation with Lola saying she wasn't sure what it involved and that she felt bad for asking. Lola assured her that with four children of her own she was done with building her own family and that they should definitely check into the procedure and what it involved. Wendy wasn't so sure, and at that point Lola believed it was more "me pushing her." So her sister gathered up what information she could find and presented it to Lola. "When I looked at it, it was a little scary," Lola confided. There was a lot more to the procedure than she had anticipated. "This wasn't, here's some eggs, have a nice day," it involved a big-time commitment. The more she learned about the process the more she realized that she needed to talk it over with her husband. She wondered, with "the fluctuations of mood and all of that, how would that affect my job and my work and my parenting and my relationship with my husband?" So Lola discussed it with her husband, letting him know that she wanted to do it, what she knew about it, and that it would really help Wendy and her husband. He responded with his characteristic good humour "well they're your eggs, you can fry them however you want." He was 100 percent supportive of Lola and she felt his funny comments throughout the process made it into something quite humorous for them as a family. Lola's four daughters were also told about what their mom and aunt had planned "I didn't want it to be something you do that's a big secret" she said. And although her sister was indecisive about the process, Lola was "100 percent sure" and willing to do it. Lola's brother-in-law, with whom she says exists "a bond between us that is very unique, and it's very respectful," was scared too, but willing to take the risk. Her sister though, had many concerns, one being what the reaction of her parents would be. 8 0 Wendy decided that for the moment she would like to keep this between just the four of them, which caused a little bit of tension. Lola didn't like the fact that her sister wanted to be more secretive about the process than she did, but she agreed to keep quiet, that is until things started moving along and it was almost time for her to go to the clinic and meet with the psychologist and the doctors. "I thought ok this is it, this is the big step. I needed to talk to my parents. I needed to be open and honest." Lola believes that a big part of her personality is to be open and honest. Even if her Catholic parents objected and asked her not to do it, Lola knew she would disregard that, because she had already made up her mind. She just felt she couldn't do something this important behind their backs. Two days before she flew out to meet her sister at the clinic, and against Wendy's wishes, Lola told her mother what was going on. As a consequence when she arrived in Vancouver "there was a big kerfuffle," recalled Lola. She had disregarded what her sister had asked, and they had trust issues to work out. They used the session with the counsellor to resolve their differences regarding disclosure. Lola wasn't sorry for telling though, particularly since her mother said "oh I would do the same, good for you" which made her feel really good. Her mother was such a positive person so Lola didn't really feel much anxiety about telling her. Once it was decided that they were going to go through with the procedure Lola's only concerns were health related. "My concern was the long term side effects. Risks for ovarian cancer and things like that." Lola felt she had adequately considered the concerns around boundary issues. She had many talks with her friends about the issue of how she'd feel about a child that resulted from the donation. She felt in her heart that she would feel the same way as she did towards all her nieces and nephews. 81 She thought that she had such a special relationship with each one of them "and I'm lucky to have that, but it's a different kind of love than my own children". If anything, Lola believed she would feel this extra bit of love towards the child and decided that it would be ok if the child was loved just a little extra bit. She certainly wasn't worried about feeling like the child was hers, or that she would want the child, or anything like that. She was confident that she had thoroughly dealt with her feelings in this regard, and she felt very fortunate that her friends were so supportive of her. Interestingly, not all of her friends had positive reactions to the news that she would be an egg donor. A really good friend of hers, an older lady, was against it, saying it was like playing God. Lola accepted what she said and thought about where it was coming from and realized that the woman's generational views of technology were different and that her religious bent probably had something to do with her negatives feelings about Lola's donation. Because Lola viewed herself as a spiritual person with a very close relationship with God, the woman's opinion didn't bother her. She truly believed "that if there was going to be a life out of it, out of this whole thing, then God would be the one to do that." In Lola's words: "I just felt deep within myself a whole peace about it." The Donation For Lola the actual medical procedure was both trying and rewarding. She thought it was going to be easier than it was, recalling at times thinking "geez this is really hard." She gained weight, had hot flashes, pain and some moodiness "it was uncomfortable and put everybody out." But she also felt it was a positive experience that brought a lot of people together. She felt well supported by the different people in 82 her life. Her friends, co-workers, doctor, pharmacist and the lab techs she had gotten to know, all asked how she was doing whenever they saw her. The biggest physical hurdle during the procedure was the self-injections. After the third day Lola found she just couldn't bring herself to do it. With her family gathered around her cheering her on, Lola's husband overcame his fears and helped her with the injections but only after their 12 year-old daughter threatened to do it first. Everyone was very excited. Even Lola's children were excited. Lola made certain they were informed about every step of the procedure, she showed them diagrams of what was going on inside her body, and what the drugs were doing to both her and their aunt. It was very important to her that everything was open and that the whole family shared in this experience. When it got closer to the retrieval time, Lola, her husband and their kids drove in and stayed with Lola's brother and sister-in-law. Everyday they would go for blood tests or medical consults as the doctors charted her progress. The retrieval yielded between five and seven eggs, and only three of them fertilized, with two being good enough for implanting in Wendy. The many difficult decisions regarding freezing the extra embryos and dealing with multiple birth issues were sometliing that Wendy and her husband were extremely uncomfortable tliinking about. Lola was therefore really glad that, with the way things worked out, those decisions just didn't have to be made. She knew her sister was dealing: with a lot o f issues during the whole procedure, and respected that WeaSy and her^husbandrfeeid^ their time together alone. Despite this, Lola said she felt very close to her sister during the process, "I felt like we were on some 83 kind of weird and wonderful adventure. Something we were doing together, something sisters never get to do. I just felt very privileged to be able to help her in this way." The Pregnancy When her sister's pregnancy was confirmed Lola said they "partied" for probably three weeks straight. "That was such a big trip... by that time I couldn't keep it a secret. I thought, 'this is such a wonderful thing, that people have got to know.' This is an amazing miracle that's happening." Lola began to pressure her sister to tell their father, so Wendy flew in for a visit and decided she would tell him. Although Lola was relieved that there would no longer be any secrets, she was worried about her father's reaction. She didn't want any of her Dad's negativity spoiling her sister's experience, so Lola wrote their dad a letter where she explained her view that only God could give life and if it was going to happen God would make it happen. To everyone's surprise and delight Lola's dad was so happy. Although he said he didn't want to know the details he also said he'd take another grandchild anyday. After the first trimester of her sister's pregnancy passed there was another big celebration. They were all happy because they had talked about what would happen if it was unsuccessful and Lola had made it clear that she wouldn't go through the donation process again. Not only were health concerns too important, but she knew her age would probably be a factor prohibiting her participation in the process again. During Wendy's pregnancy the sisters talked on the phone every week. They even managed to see each other a few times. Lola remembers the first time she saw her sister looking pregnant: "she was so cute and so glowing." They just talked and talked about everything- talked about being pregnant and what it's like. 84 Lola remembers that it was one of the most thrilling days of her life when she heard her sister had a beautiful healthy baby girl. "I think I cried for half the day and jumped around, I know I didn't get any work done." Shortly after the birth she flew in to see her sister. Although she instantly loved the baby when she first saw her, she was very interested in her feelings because she felt that "it really was my sister's baby." She felt amazement that it really worked and that this beautiful perfect little girl was created, but other than that, her feelings were clear. "I felt towards her just like I did with my other sister's little girl when she first had her baby. I just felt in a way those babies are mine. And I don't know if other aunts feel that way but I think that's an aunt thing." Lola was often asked by people how she felt about her donation and she was always able to say "total joy, like pure joy. I'm amazed and grateful, in awe, so proud of my sister and her husband, proud of my family for supporting me the way they did, just grateful that I'm the one that could have that opportunity." The Consequences Lola believes that through this special process her relationship with her sister was brought to a whole different level, a whole different place that nobody else goes to: "That nobody else understands. I mean, who would understand that, but us?" She also feels that her relationship with Wendy's husband has deepened and that the experience has only had positive effects on her other important relationships. "My mom always tells me she's so proud of me, and I think she does that with everybody, but I guess in a way that we always want to please our parents even when we're adults. I know that it pleases them what we did and that feels good." As for her husband and their children, Lola believes the experience brought them closer. She thinks she never would have 85 made it through any of it without her husband. In her words she said, "how supportive he was to me showed how much he loved me. Looking at that it's all positives." Watching her niece grow up has been very exciting for Lola. Although she discussed with her daughters that genetically the child was their half sister, she was sure to underscore and focus on their social bond as cousins, and they seemed ok with that. They love their cousin very much and sometimes they'll say "does she look like me when I was little?" As for Lola she sees herself in her niece, "I mean you can't really admit that, but she definitely has a lot of our traits, we just don't comment on it. But it's there." In a way she doesn't find it that unusual since her family comments on all of the kids, looking for resemblances and assigning family ownership for different traits. Her sister has kept a photo album/journal of their experience conceiving the child and plans to give it to her when they tell her about her origins. It pleases Lola that they plan to tell her, not only because she dislikes secrets but because "it makes a beautiful part of her story and I tliink she needs to know that she was created totally by people that love her and you know that she was so wanted that everybody was willing to do these things." If her sister and brother-in-law change their minds and decide not to tell her, Lola thinks she would be disappointed but she says she'd get over it. She is just really looking forward to having the opportunity to tell her niece how much she loved her mom and dad and wanted so badly to help them. The future seems bright to Lola. She thinks her niece will grow up to be a very well rounded individual. She anticipates that the teenage years may be difficult, when she's rebelling, but Lola believes her niece will know that she's surrounded by a host of people that she can go to when she needs help. "When you grow up in that environment 86 it's got to be good, I can't see it being bad. I definitely think it will be great just watching her grow up. She brings so much joy to our lives, all our lives." Lola's only concerns are for her sister and her father. Their relationship has always been marked by tension. She worries that her sister may not encourage her father to be a part of his granddaughter's life. Lola thinks this is unfair to her niece because she knows the love her Dad has for all of his grandchildren and how he wants to be a part of their lives. "But I'm not her parent so I'm not going to get involved unless I feel that I can help in some way." Lola believes that openness and honesty are the key ingredients to her positive egg donation experience. "I really feel that I was fortunate. That it wasn't anything great that I did. I really think that what happened, what we were a part of was really a miracle. I feel grateful, grateful that we have this story to tell her, grateful that it happened." 87 Overview of Common Elements The purpose of the study was to explore and describe the experiences of three women who donated their eggs to a family member to help them create a life. The analysis of the resulting, validated narratives yielded thirteen common elements shared by all participants. These are listed below. The common elements are not presented in any specific order, and are not based on level of importance or significance. Table 1: Common Elements Identified in Narratives 1. Donors as instigators 2. Consultation with spouse 3. Compassion as the most significant motivator 4. Importance of being finished building their own families 5. Concerns about future health problems 6. Clarity regarding donor's role 7. Importance of pre-donation counselling 8. Feelings regarding disclosure to others 9. Feelings regarding disclosure to the child(ren) 10 Positive responses from others 11. Looking for resemblances 12. Special relationship between donor's children and recipient's children 13. Relationships with recipients deepened 88 Donors as Instigators This element refers to the initial conversations the donors and recipients had regarding egg donation as a possibility. All of the participants offered to donate their eggs to their sisters as soon as they mentioned that egg donation was one of the few alternatives left to them to build their own families. The offers were not immediately accepted by the recipients. In all cases the donors felt much more certain that they wanted to participate in third party reproduction than the recipients. The participants suggested that their sisters had many concerns including: fear of failure, financial considerations, reactions of others, and a need to ascertain that the donor knew what was involved in the donation procedure. While the recipient sisters were resistance and/or hesitant to participate in the egg donation process, all of the donors reported feeling sure that this was something they definitely wanted to do. For example, JR brought up the idea of donating her eggs to her sister, but her sister needed time to think about the offer. In her words; "I said think about it I'd be happy to be an egg donor. Talk it over with your husband and let me know. It was about a year before they actually decided they wanted to try it..." Mary talked about not even needing to do the research her sister and brother-in-law did prior to deciding about the donation: "They wanted to make sure I was ready and I knew what I was getting involved in, they did more of the homework on it than I did. I kind of stayed on the side and said 'okay well let me know when it's time.' So for me there was no hesitation or nothing, no thoughts, just let's do it." For Lola the decision to participate in third party reproduction was also much easier to make than it was for her recipient: "My sister was very indecisive and she 89 wasn't sure. She just didn't want to do such a big thing. Even financially it was a big thing for them. The whole idea behind it- what if it works? what if it doesn't work? .. .But I was 100% sure. I had made my decision that this was what I wanted to do and what I was willing to do." Consultation with Spouse This element refers to the decision-making process of the donors. Al l of the participants offered to donate their eggs to their sisters immediately upon hearing that egg donation could help them have children. In all three cases discussions with their spouses occurred after the initial offer to donate their eggs had already been made to their sisters. However, for all participants the concerns of their spouse were taken into consideration before a final decision was made, and each participant said they would not have proceeded if their partners were against the donation. These donors saw consultation with their partners as very important, and considered support from their partners as crucial to their ability to be involved in the egg donation procedure. In all cases the spouse was fully supportive of each participant's desire to donate her eggs. Mary relates the process of finalizing her decision to donate her eggs in the following way: ".. .1 had actually volunteered my services before even speaking to my husband at the time to see what his views were on this. And at that time when I did mention it to him and we found out more about it, the decision was left up to me.. .but I did want my husband supporting me.. .If he would have said no, I wouldn't have jeopardized our marriage." In a similar vein, JR explains that her husband's concerns had to be dealt with before she would go ahead with the donation procedure. "My husband was in on all of 90 this, I talked to him about it and he was okay with it. Initially he was a little concerned, but when we kind of put it down in black and white it was easier for him to grasp and he was completely fine with it." Another example of the necessity of consulting their spouses comes from Lola: "At first it was kind of just between my sister and me, and then all of a sudden it was more, 'Oh! Well this is my health.' So at that point I seriously talked to my husband because I had only mentioned it, and he said 'well they're your eggs, you can fry them however you want.' He was 100% supportive." Compassion as the Most Significant Motivator This element refers to the motivations expressed by the participants for donating their eggs. In all cases the participants shared that they felt deep compassion and hurt for their sisters' struggles with infertility. The donors were moved by the plight of their siblings and were aware of the injustice of the situation. A common belief of all participants was that their sisters would make great mothers. As such the donors were unanimous in their desire to do what they could to help bring about the opportunity for them to experience motherhood. For all participants, the closesness of their relationship with their sisters was considered critical to their decision to donate. For example, Mary describes her feelings about her sister's struggle to achieve motherhood in the following way: "I felt a hurt for her in the sense that she had to have two pregnancies terminated [because of Down's syndrome] and here I had children... having two kids of my own and her not having any for life was not fair." For JR, her loss of an unplanned pregnancy when she thought she was finished having her children increased her appreciation of her sister's struggles and further 91 reinforced her desire to donate. "I miscarried at 6 weeks, and that was a very hard time for me. I guess it kind of brought to mind what it must feel like for women who are trying to get pregnant and can't... the disappointment and the sadness. I just felt if I can do this for her after knowing what it felt like, hopefully it would work and they'd experience parenting their own child." JR also described the importance of her relationship with her sister as being critical to her participation in known egg donation: "If I didn't have that relationship, I don't think that I would have offered to have done it in the first place..." Lola also discussed the injustice of her sister's infertility and the effects it had upon her. "I didn't understand why it was so easy for me and my other sister to get pregnant. What was going wrong for her? I knew that it was taking an emotional toll, and I watched her dealing with feelings of being a failure and feelings of depression." Importance of Being Finished Building Their Own Families This element refers to the belief expressed by participants that egg donors ought to be finished building their own families before they participate in egg donation procedures. In all cases the participants felt it was important to the success of their donation experience that they were finished having their own children first. The unknown long-term consequences of taking fertility medications seemed to be critical in this regard. For all participants the decision to donate their eggs hinged on the fact that they did not plan to have any more children and so would not have regrets if any negative consequence in terms of their future fertility, resulted from the medical procedures. 92 The importance of being finished building her family was apparent for JR, she speculated on the possibility of future problems. "Even if it wasn't something that happened during the procedure and then it ended up that you could not get pregnant after, I think you'd always question that. And if they got pregnant there would be a lot of animosity and jealousy and all kinds of ugly things could evolve." In talking about her offer to donate her eggs, Lola also emphasized the importance of being sure her own family building was complete. "Because my husband and I were definitely done with our own...if you're not done with your own family, then don't (donate)... otherwise I think there could be problems." Mary also mentioned being finished having her own children when she discussed that she wanted a little girl of her own at one time, but had absolutely no regrets that she had two boys. Concerns About Future Health Problems This element relates to the medical aspect of the procedure. In all cases the only concerns mentioned upon going into the donation process were health related. The women were aware that they would be required to take medications for which the long-term effects are still not completely known. As such, each participant expressed of anxiety over the possible long-term health consequences of the procedure. They also all had concerns about the short-term side-effects associated with the different medications they would be taking. As a consequence of possible future health concerns all participants put limits upon the number of times they would be willing to participate as egg donors. 93 Lola shared her reasons for not wishing to undergo the donation procedure more than once. "My concern was the long-term side effects. Risks for ovarian cancer and things like that.. .those were my only concerns. I said up front that I wouldn't do it again, because I have children of my own and they need a mother." Conversely, JR acknowledged the risks of the procedure but dismissed their importance: " I just thought I know women that have been for in vitro several times and I thought I'm only going to do this once. I figured that the benefits or end result far outweighed the supposed risks." Mary's concerns for her health, also resulted in putting limits on the number of times she would take part in the donation procedure. "The only hesitation would have been the health issue. What if five years from now I have ovarian cancer... what do my children do without a mom five years down the road?' Despite these concerns, when the first donation wasn't successful Mary told her sister and brother-in-law: "we are going to do it again because this time around you're going to have a child out of it, but there won't be a third time." Clarity Regarding Donor's Role This element relates to the common assertion by the participants that they did not consider themselves the mother of the child(ren) that resulted from their egg donation. All participants in this study expressed the view that their sisters were unequivocally the mother of the resulting child(ren). Furthermore, in all cases the participants stated that although they felt a bond with the child(ren) they did not hold any maternal or possessive feelings toward them. 94 For example, Mary related her thoughts on her relationship with her sister's twins: "I don't feel like I'm their mom, because I didn't carry them for nine months and I didn't birth them. There's a fine line and we both don't step over it and we all get along really well." The thought that the resulting child would even be considered her child, seemed ludicrous to JR. "He will never be my child, I never carried the child. I know I'll always have a bond with him, but not that it would be maternal, because I don't have those feelings at all. I'll never think gosh this is my child. I mean that's ridiculous." Similarly, Lola talked about knowing she won't ever have maternal feelings for her niece. "I just knew in my heart I would feel the same way I do towards all my other nieces and nephews. I just love them so much and it's a different kind of love than my own children. I was interested in how I felt, because it really was my sister's baby." Importance of Pre-donation Counselling For all participants in this study the session with the counsellor did little to influence their decision to donate. Instead the value of the counselling session was seen in the ability of donors and recipients to sort through issues of disclosure and boundaries. In all cases disclosure to others around participation in egg donation or what and when to tell the children regarding their origins, were considered by the women to be the important issues that required discussion during counselling. For example Mary discussed what the counselling session did for her: "I was pretty positive, I just wanted to go and do this. Nobody was going to talk me out of it. One of the things that did get mentioned during counselling was that I should speak of this to my children once they got a little bit older, but that was something that I felt ;, 95 strongly about that didn't need to be put out on the table." Although Mary affirmed she still feels this way, she shares that one of her fears for the future relates to telling her children: "I have a fear if, when my sons get older, I probably should let them know, my fear is what will they think of it, of their mother? Are they going to think that I did a great thing or are they going to resent me because I waited till they were 30 or something to tell them." For JR the counselling session was described as helpful in that it simplified what would be involved in the future discussions with the child born of the egg donation: "When to tell the child and what to tell them- kind of matter of fact. So that for me made it a lot more simple, rather than making it more complex." Lola believed the counselling session was extremely important. She described it as a turning point in that it was the first big act in the process. Lola shared her experience of disclosure issues being dealt with during the counselling session: "Actually two days before I flew out there I told my mom because I had to. I just felt like I had to. And that's why there was a big kerfuffle when I got there, because I had already told my mom. You know trust issues.. .but we worked it out." Feelings Regarding Disclosure to Others This element concerns the difficulty all participants faced regarding their sisters' preferences to keep the donation more private than they would have liked. The women described needing to explore with their sisters who to disclose the egg donation to and when. For JR the reluctance on the part of her sister and brother-in-law to tell his side of the family about the egg donation was problematic. "They actually have not told his 96 side of the family. And I guess that's probably the one thing that I'm not quite happy with.. .it's really none of my business, it's just my personal preference". Additionally, JR's advice to others contemplating donation includes the necessity that the donor agrees with the recipients' decision around disclosure: ".. .1 think you have to agree with them as to whether they will tell the child and the family or not tell them and leave it at that. I mean it is ultimately their decision but I think it's very helpful if the donor agrees with what the decision is going to be". Lola's preference for openness and honesty was evident when she related her advice to her sister about disclosing the egg donation to their father. "My sister was still a little leary about telling people, but it was such a big thrill, so then I started pressuring her to tell my dad. I said to my sister 'tell him and try not to care what he says if he's negative about this, because this is a wonderful thing.'" Lola also shared her belief that when discussing disclosure issues the donor's feelings must be taken into account because living with secrets can be very hard on a person's mental health. The decision not to tell others was problematic for Mary. Not having anyone to speak to about the long lasting side-effects of the donation procedure, made things difficult for her. Mary shared her experience of dealing with the fears and concerns she had: "I just pretty much kept them inside.. .we wanted to keep this as quiet as possible and so who do you turn to, I had no one. I guess I could have sought counselling, but no, I didn't speak to anyone. I just kept it inside and maybe that's what made it so hard too." 97 Feelings Regarding Disclosure to the Cbildfren) Another element that came up for all participants related to their feelings regarding disclosure to the child(ren) born of their donation. In all cases the participants were comfortable with the child(ren) knowing the role the donors played in their conception. For the most part the participants hoped that the child(ren) would be told but they also believed it was up to the recipients to make that decision. For example, Lola stated that in addition to not liking secrets, she is pleased her sister plans to disclose her identity to her niece: "I think every person has the right to know. So I'm really happy about that. If they decided no and changed their minds, I think I would be disappointed about that because that closes the door to any other opportunities that might come along. Maybe one day she would like to come and talk to me about it and how I felt. And I would love to have the opportunity to tell her how much I love her mom and her dad and that I wanted so badly to help her mother and father. I'd be disappointed if they decided not to tell her, but I'd certainly get over it." JR related her wish that her nephew will have a positive attitude about the donation when he is told. "I hope that he realizes it was a gift of love. My biggest hope is that he just comes through this with a real positive attitude, that's the way it was, matter of fact." In addition, JR stated that she would be open to participating in the discussion about her nephew's conception if that was his parent's preference. "It is ultimately their decision. I'd be fully open to that, if that was fine with his parents. Anything that would help the child." For Mary the issue of disclosing to the twins is a difficult one. The recipients' preference is to keep things quiet, but Mary realizes that there are some issues that need 98 to be addressed. "If something ever goes wrong with one of them, they should know that my kids could give blood or for medical reasons. You should always know your past, and when they go to have their own children, they need to know their past medical history. That's something the four of us would have to sit down and discuss." Positive Responses From Others This element refers to the reactions of significant people in the participants' lives when they were told of the egg donation procedure. The vast majority of reported reactions were positive for all participants. When all of the women told family, friends, and colleagues about their intention to donate or that the donation had occurred the ovemhelrning responses were excitement and interest. There were only two incidents in which the participants received what they inferred as somewhat negative comments. However, the two participants who experienced a negative reaction, were able to contextualize their responses or ignore them so that they had little effect. For example Lola discussed the reactions of one of her friends to her disclosure about the egg donation. "I have an older lady who is a really good friend, and she said she was against it, that it was 'playing God'. I accepted what she said and thought about where she was coming from. I just felt deep within myself a whole peace about it, and that it was wonderful and it would work out." This reaction appeared to be substantially different than that of other people in Lola's life. "There were so many people in on it, like my doctor and the pharmacist, and people that I knew, including the lab techs that I got to know. They would all ask me how things were going. There were so many people involved and it was really great." 99 The only other people that knew about Mary's involvement in egg donation were her parents. She shared their reaction to the news. "They were overwhelmed that I would do this, I don't think they quite knew the whole extent of it.. .they were thrilled, they really were." JR's friends who were told after it had been cleared with her sister all had positive reactions, except for one. "They were excited they thought it was great. I had someone basically tell me that 'it's your child' and I thought, 'there's the door.' No it's been very positive". Looking For Resemblances All of the participants in this study felt their recipients were to be considered the parents of the child born from their donated eggs, yet all could not help but look for similarities between the child and themselves. In all cases the participants' spouse and children (when told of the donation) did so also. Equally interesting is how the participants were able to explain away these similarities as family resemblances, or to attribute them to the father's side of the child's genetic history. Lola shared her experience of seeing herself in the child born from her donation. "I did see myself. I do. You can't really admit that. Sometimes I think my brother-in-law says 'oh no she looks more like my side of the family,' but she definitely does have a lot of our traits. We just don't comment on h. But it's there." Lola's children know about the donation and she said that they also ask whether their cousin looks like they did when they were younger, but she added that they did have a discussion about boundaries. "My youngest daughter said 'does that mean she's our half sister?' and I said 'well, technically.. .1 guess you could say that, but really she's your cousin and 100 that's the way it's going to be....and they seemed very ok with that. They were curious." Mary experienced a lot of anxiety over whether the children would look like her. She related her feelings when she saw the babies the first time. "There were a lot of emotions. Both my husband and I were looking to see who they look like, and actually he did say to me about a year ago 'my goodness the little one looks like you a bit.' Even though they are my niece and nephew, my sister is my sister, how do I say this, my son looks like my dad, well it's just all family, it's all blood and that's just the way I look at it now." In a similar vein, JR states that she sees similarities between herself and her nephew. "There is some resemblance. He's got blond hair and I've got blond hair. But my sister's husband had very blond hair when he was little and so it could be linked to his side. So to be fair I'll always have some thoughts- 'is that like me?' But then again, her husband and I have such similar personalities, it could be him." Special Relationship Between Donor's Children and Recipient's Children Another common element among the experiences of the participants in this study, were the participants' observation of a special relationship between their own children and the child(ren) born of their donated eggs. In all cases there was mention of the perceived closeness between the children. In the cases where the children are all close in age, the participants wondered if the genetic tie might be behind the bond. For example, JR talked about the relationship between her kids and their cousin. "My children don't know yet, and they see this cousin quite a bit and it's amazing the 101 bond that they have. And of course you think kids are so supersensitive that you wonder 'do they really feel like they know, really know each other?'" Similarly, Mary mentions that her son has a very close relationship with the children born of her donation. "There's such a bond with my youngest son. It's amazing. I think the three of them kind of look alike. They have similarities in hair colour and eyes.. .a special bond and why again, I don't know if it's because they're cousins or are they close because they feel a brotherly and sisterly bond." Lola's children are all quite a bit older than their cousin, but she shared that they also have a close bond with their cousin: "They love her so much." Relationships With Recipients Deepened This element represents the changes that the participants felt occurred in their relationships with their sisters and brothers-in-law following the egg donation procedure and the birth of the child(ren). The participants believed that their relationships to their recipients were closer than they had been before the donation. In addition, they described the existence of a special bond between their recipients and themselves. In the one case where this wasn't explicitly stated, the donor already had what she considered to be an extremely close relationship with her sister and did not anticipate that this would change. All participants discussed their expectations that their relationships with their recipients would continue as before. Yet often, they described that the relationships deepened and the level of contact was even greater. To highlight this point Lola talked about how things were between her sister and herself following the birth of the child. "She kept saying 'thank you' and I kept saying thank you to her. And I sent them cards and little things. It was like bringing our 102 relationship to a whole different level, and a whole different place that nobody else goes to... and I also felt that my brother-in-law was a part of that." Mary also spoke about the changes in her relationship with her sister and how she envisions their future. "We're just closer, there's a different kind of bond, we're just a bit closer. I figure it'll just be pretty much the same, we'll just keep continuing getting closer. I can't see any problems.. .my brother-in-law is an absolutely super person. No, I just think we'll stay close like we are, if not become even closer. I don't know if we can get closer, I just think we'll have that strong bond between us." JR does not expect the close relationship she has with her sister to change as a result of their donation experience. "We're very close. As kids we were always close even though there was that age difference. We're the types that will talk on the phone everyday, sometimes twice a day. I feel we can tell each other anything, the first thing I do when I have a situation where I need some advice and I want to talk to someone, I just pick up the phone and call her... in times of joy and times of sorrow. We'll just go on the way we are, which has always been close." 103 CHAPTER V Discussion In this chapter I will discuss my ideas about the results and the findings of this study in relation to: the literature on the experiences and issues of egg donors, the implications of the research findings on the practice of counselling psychology, and future research in related areas. Limitations to the study and a brief comment regarding the implications of these results for future policy/legislation for egg donation will bring this report to its conclusion. This study sought to explore and describe the experiences of women who have participated in third party reproduction via egg donation. I hoped to answer the question: What are the meanings of the experiences of women whose egg donation to a family member or friend has resulted in the birth of a child or children? I am confident that this study did indeed reveal the post-donation experiences of three different women egg donors. Specifically, these women were able to share the meaning the act of known egg donation had for them and thereby allow for a rare glimpse into this typically secretive process that has not been well researched. Any links made to the existing literature as well as any inferences about the results are done with the knowledge that the common elements found in this study reflect the experiences of the three participants. The reader must consider whether these common elements resonate with the experiences of other people who participate in known egg donation (and perhaps other third-party reproduction methods). While I am confident that the common elements detailed in this report are credible and authentic and can be tracked to the participants themselves, I am aware that any transferability of these 104 results is a subjective act. I believe it is incumbent upon the reader and myself to judge whether these common elements can be seen beyond the context of the three people who were interviewed. Despite the small number of participants (see Limitations to the Study), I was pleased to note that the demographic descriptions of these participants were similar to the typical donor outlined previously (for example, Kan Abdalla, Ogunyemi, Korea, & Latarche, 1998; Sauer & Paulson, 1992). All interviewees were white, married, middle-class, educated and employed women who were mothers. Though the group was not diverse in terms of socioeconomic status, ethnicity, and sexual orientation, this is typical of most of the research within the field of infertihty, and therefore is not a limitation of this study alone. An added benefit to this study was the fact that participants did hale from different geographical locales (one participant from Alberta, one from British Columbia, and one from Washington State) albeit all were from the Pacific Northwest. Links to Pre-Donation Literature Cooper and Glazer's (1994) assertion that known egg donors are primarily motivated out of empathy for the recipients is supported by the findings of this study. Participants stated they felt an overwhelming desire to donate their eggs to their sisters because they could see the toll that infertility was having upon them. Interestingly, this motivation was so strong that all participants offered themselves as potential donors and felt that they, as the donor, were instrumental in convincing their recipients to embark upon the egg donation procedure. The common element donors as instigators is a finding that was not noted or addressed by previous research. The findings of other researchers (Bartlett, 1991) regarding motivations aside from empathy and altruism to be 105 at work in known donation situations, for example: atoning for past abortions, alleviating feelings of inferiority, or testing their own genetics, was not apparent in the present study. The pre-donation literature also examines the attitudes of egg donors towards the more controversial aspects of third-party reproduction. Disclosure, future contact between donor, recipient, and resulting child, as well as views regarding the status of the gamete are all issues that were addressed by the participants in this study. The existing literature reveals that disclosure, who to tell about participation in known egg donation and when, is an issue that is important to most donors and recipients (Kirkland, Power, Burton, Baber, Studd, and Abdalla,1992; Weil, Cornet, Sibony, Mandelbaum, & Salat-Baroux, 1994). The findings of this study further support this conclusion. In the present study all participants told someone other than their partner about their role as an egg donor. Two of the three women interviewed in this study were very open regarding their donation, telling friends, co-workers and family members. Although this was not the case for the third participant, all of the egg donors in this study agreed that disclosure should only occur when the recipients' approval was first given. The decision of the third participant to remain more secretive about acting as a known egg donor was also made in concert with the recipient. These findings, therefore, offer support for the existing literature in regards to the importance that donors set upon the recipients' preferences regarding disclosure. Another important aspect of disclosure attitudes involves the telling of the child born of the egg donation about their origins. Weil and colleagues (1994) found that donors believed the recipients must decide whether to tell the child about their 106 conception. All participants in this study expressed similar views. Though the women interviewed in this study had a preference regarding disclosure to the child, they were willing to accept the decision of the recipients regarding this matter. As the literature reveals, known egg donors expect that their relationships with their donors will continue on as before the donation (Baetens, Devroey, Camus, Steirteghem & Ponjaert-Kristoffersen, 2000; Weil et al., 1994). The participants of this study confirm the donor expectation of ongoing contact, in that all had little doubt that they would remain in contact with their recipient families and in fact believed they would share a closer and deeper relationship with them. In terms of attitudes held regarding the status of the egg, the literature reveals some alternating viewpoints. Some donors feel that their eggs are similar to organs such as kidneys or blood (Weil et al, 1994) while others feel that there is little difference between the egg and the child born from it (Baetens et al., 2000). Participants in this study revealed a tendency to view the egg as something that had little use unless fertilized. The process of fertilization and the subsequent gestation and birth of the baby seemed to be the essential ingredients to parenthood for the women interviewed here. The literature suggests that known egg donors seem to have clearly drawn boundaries in terms of parenting in that they hold the view that the mother of the child is the woman who carries and gives birth to the child (Baetens, et al., 2000; Weil et al, 1994). Again, the present study corroborates this finding. The known egg donors interviewed in the current study state that they felt no parental attachment to the resulting child because they had not carried and given birth to him or her. 107 Links to the Donation Experience Literature A large part of the donation experience is the medical procedure that donors must undergo. The process is arduous, lengthy and physically onerous. The women interviewed for this study reported feelings of surprise when they first found out what would be required of them medically. As reported in several of the studies reviewed in Chapter 2, the participants in the present study also stated they experienced anxiety with regard to the requirement of self-injections (e.g. Rosenberg & Epstein, 1995). In addition, the experiences of the three women in this study further reinforced the findings in the existing literature (e.g. Kalfoglou & Gittlesohn, 2000; Klock et al , 1998) that side-effects are experienced differently by different donors. The participants in the current study displayed a wide range of reactions to the medication: from niinimal side-effects to lengthy and sustained after-effects that impacted quality of life. In this regard, the findings of this study can be added to the existing research characterizing the medical procedure as a challenge that requires great thought and consideration. The literature suggests that satisfaction with the donation experience is generally* very high (see Fielding, Handley, Fuqueno, Weaver, & Lui, 1998; Klock, Braverman, & Rausch, 1998; Soderstrom-Anttila, 1995). As suspected, the level of satisfaction for the known donors interviewed in the present study was especially high because they not only knew the outcome of their donation but were able to continue playing an important role in the recipients' lives. This finding was to be expected as the existing literature points to the lack of knowledge regarding outcome of donation as the greatest impediment to donor satisfaction. Although one of the participants did not have a satisfactory experience physically, she was quick to point out that overall the experience 108 was very positive. The women interviewed in this study echoed the finding of the majority of Rosenberg and Epstein's (1995) participants who felt that participation in egg donation changed their lives in a positive way. In contrast to two of the known donors surveyed by Fielding and colleagues, none of the participants in the current study expressed a resulting negative impact on their relationships to the recipients because of the egg donation. It seems likely that the lack of any negative influence on donor-recipient relationships may be the result of the successful nature of the egg donation experiences of the participants in this study as well as the pre-donation counselling they underwent. Links to Post-donation Literature As detailed in Chapter 2, the literature in the area of the post-donation experiences of egg donors is sparse. What has been written in this area is limited to general comments by researchers and the anecdotal accounts of clinicians. Due to the dearth of existing empirical literature in this area, the present study addresses a significant gap in our knowledge of the post-donation experiences of known egg donors. In discussing their clinical experiences with known egg donation, Sauer and Paulson (1992) reveal no knowledge of difficulties in the relationships of egg donors and recipient families. These researchers state that long-term follow up is necessary before concluding that participation in known egg donation does not result in relationship difficulties. They do not, however, share with the reader what sort of time frame is required before one is able to draw conclusions of this nature. Despite this omission, it seems that the results of this study support these anecdotal findings. The participants in the current study revealed clearly defined boundaries in regards to parental status and 109 therefore did not express the possessiveness, loss or grief that Sauer and Paulson cautioned could occur in known egg donation situations. More importantly, the participants interviewed here describe powerfully positive scenarios in which donor and recipient share close and meaningful relationships, where the donor plays an important role in the recipient's family, and where the donation experience has had a profoundly significant and valuable impact on not only the egg donor but all participants in the known egg donation-assisted conception. Whether the present study addresses the issue of long-term follow-up as intended by Sauer and Paulson remains to be seen. An equally important conclusion that can be drawn from the findings of this study is the refutation of speculations made by some researchers regarding deterioration of donor-recipient relationships due to participation in known egg donation (Baetens et al , 2000; Bertrand-Servais et al., 1991; Saunders & Garner, 1996). For example, instead of recipients harboring negative feelings of indebtedness to the donor, the participants in the present study tell a different story, one where expressions of gratitude are reciprocal, because both donor and recipient felt they were given a gift by participating in the creation of a life through egg donation. Furthermore, there was no evidence that recipients felt it necessary to protect against 'fantasies of parenthood' by the donor or 'fantasies of the husband's adultery' by insisting that secrecy regarding the genetics of the child be enforced by all. The fact that the participants in this study stated their recipients had plans to tell the child(ren) of their origins seems to support this finding. The results of this study, the participants rather positive experiences and lack of the speculated negative impact of participating in known egg donation, is most likely due to the provision of pre-donation counselling. All participants in the present study 110 underwent pre-donation counselling that they described as helpful and important. In corroboration with Ahuja, Mostyn, & Simons(1997), the provision of pre-donation couriselling likely affected the post-treatment outcome of the participants involved in the current study so that no instances of'shattered lives' occurred. Implications for Counselling As emphasized above and in the existing literature the provision of pre-donation counselling is integral to ensuring that prospective known egg donation participants make informed choices they can live with. Pre-donation counselling is not only necessary for assuring that donors are adequately screened, but that all participants are made aware of the possible complications related to third party reproduction (for example, Ahuja et al., 1997; Cooper & Glazer, 1994; Saunders & Garner, 1996). The present study provides ample reinforcement for the effectiveness and necessity of providing pre-donation counselling to all of the parties seeking to participate in known egg donation. The findings presented here show that pre-donation counselling aided the women interviewed in this study to achieve clarity regarding their role as a donor, what their expectations were and whether these would be met or needed to be reconsidered, and what would be expected of them. The presentation of three rather positive donation and post-donation experiences as detailed in this study should support the mandate that clinics offering third-party reproduction treatment procedures need to provide pre-donation counselling for their clients. Counsellors, therapists, and other professionals working in the field of infertility may find this research useful in developing a better understanding of some of the issues that face those contemplating known egg donation. In addition to the recommendation I l l that pre-donation counselling be a requirement of participation in known egg donation, some more specific suggestions for what pre-donation counselling should entail, particularly with regard to the donor, are made based upon the experiences of the women interviewed here. The participants' narratives indicate some of the issues that were crucial to how they experienced their egg donation outcome. Discussion of issues of the donor's own family building goals, the possible adverse effects of the procedure, support from others, disclosure, boundaries, as well as limits to pursuing treatment were all relevant to their post-donation experiences. The first suggestion for counsellors working with this client group is that a discussion of the donor's own family-building goals may be useful. The participants in this study were all finished building their own families and attested to the importance of this in making the decision to donate their eggs. Because the egg donation procedure involves medications with possible after-effects, ovarian cancer has been mentioned by at least one study (Whittemore et al., cited in Cooper & Glazer, 1994), donors need to be aware that their health could possibly become compromised as a result of the donation procedure. It is therefore recommended that all counsellors working with potential egg donors provide a detailed description of the possible health consequences, including side-effects and after-effects, associated with the egg donation procedure. All participants in the present study were told about the procedure and the possible effects to their health due to the medications required. Armed with this knowledge they were able to make informed decisions and have therefore not had to live with regrets or concerns about future fertility. 112 The experiences of the women interviewed in this study lend credence to the idea that support from significant others is desirable if donors are to tolerate the exhaustive egg donation procedure. It is suggested that therapists working with potential donors and recipients discuss the possibility of enlisting support from significant others (where this is a possibility) in such areas as adrninistering injections; being aware and forgiving of side-effects such as mood swings; and understanding that daily life may be impeded due to possible physical effects such as pain and bloating. It was my observation from conducting the interviews and writing the narratives that the more support the participants perceived they had the more satisfying their experience of egg donation seemed to be. It is therefore recommended that donors and recipients be encouraged to engage in a discussion about their support networks. It is furthermore not recommended that donors and recipients count on each other as their source of support. The one participant in this study who had rather limited support resources told of her unwillingness to share with her recipient what was going on for her because she didn't want to ruin her experience. Provision of additional supportive counselling sessions in cases such as this is recommended. Disclosure to others about participation in known egg donation is perhaps the most important issue that counsellors should discuss during pre-donation counseling. It is suggested that adequate time be taken to discuss the expectations of each of the parties involved in the known egg donation procedure as to who can be told. Consideration as to the need for the donor to receive support outside of the donor-recipient relationship as described earlier is recommended. Additionally, a discussion about the different reactions that people not familiar with third-party reproduction procedures may have and 113 ways that the donor and recipient could cope with these reactions may be helpful. The participants in this study shared that the reactions of others to their disclosure of donating eggs to their sisters were not always positive. Education about the process and about the attitudes of the donor and recipient to the more controversial aspects of donation may be required when choosing to disclose to others. Counsellors could help donors and recipients to be aware of this possibility and perhaps role-play ways to cope with such situations. The participants of this study revealed the need for donors and recipients to be in agreement regarding the disclosure to the resulting child of their donor-assisted conception. It is recommended that counselling professionals working in this field engage their clients in a discussion about the expectations the different parties have about disclosing to the child his or her origins. It appears that positive donation outcomes exist when the donors and recipients have similar views or at minimum come to an agreement that the recipient's decision be respected. Some donors may need help dealing with this and therefore it is highly recommended that counsellors discuss the roles of all parties in the recipient family's life. , Boundary issues such as: who has the right to tell the child his or her origins, who has the right to decide what is done with the excess eggs and embryos produced from the donation, who decides about aborting multiple fetuses, and what the future roles of everyone involved in the donation procedure will be, are just some of the areas that counsellors are recommended to explore with their clients. Clarity regarding these issues helped the participants in this study understand their role in the lives of the recipient family. They expressed feelings of empathy for the recipients to have to make 114 the tough choices and understanding that these tough decisions were not theirs to make. Additionally, it appears that all of the participants in the present study were clear with regard to their role in the lives of the recipient family. All of the women interviewed here were happy to continue in their role as aunt to the child, sister to the recipient, and sister-in law to their recipient's partner. Feelings of joy at having helped to create their recipient's family unit were stated to be enough of a reward for the participants of the current study. These findings suggest that adequate pre-donation couriselling in the area of role expectations for the different parties involved in known egg donation is crucial to a positive post-donation experience. A final suggestion for counselors working with third-party reproduction participants is with regard to helping clients set limits on what they are willing to go through to achieve the desired goal of pregnancy. The participants in this study revealed they had set limits to the number of times they were willing to undergo the donation procedure. It is recommended that the counselling professional in these circumstances work to help the donors and recipients come to an agreement with regard to this matter. Both the donor's and recipient's concerns need to be heard and dealt with to avoid future feelings of regret and recrimination, or as Baetens and colleagues (2000) state negative influences to the donor-recipient relationship. Much of what the counsellor working with prospective known egg donation participants does is similar to couples therapy. The counseling professional working in this field is additionally required to combine education with therapy, ensuring that the participants have enough information to make informed choices regarding participation, and that once the decision is made all parties are aware of what the decision will mean. 115 It is recommended that such counsellors be skilled in assuring the views of both the donors and recipients are shared and that agreement is reached between these parties. Directions for Future Research The area of post-donation experiences of those involved in known egg donation is rich with possible opportunities for exploration and investigation. The results of this study suggest that future research is needed to elaborate upon the possible implications and issues of participating in this form of third-party reproduction. The common elements described in this study are representative of the experiences of a small number of women who have donated their eggs to family members, particularly to their sisters. Similar studies to the one reported in this thesis would be beneficial in determining the effect that participation in known egg donation has upon the lives of both donors and recipients. Further research into the experience of mterfarnilial donation situations, particularly after greater periods of time have elapsed since donation, would be helpful in serving those contemplating this type of treatment to make informed decisions. As stated, this study was undertaken to explore an area in which there was little known, particularly of an empirical nature. The findings of this study indicate that there are a host of issues and implications for both the recipient and donor in these situations. It would be highly iUuminating to interview recipients of known egg donation situations in a similar way to see what correspondence exists between their post-donation experiences. Perhaps counseling for donors and recipients may require concentrating on different issues and ideas. To further explore the speculations of some of the researchers mentioned in Chapter 2, it may be necessary to investigate the experiences of known egg donors 116 whose donation did not result in the birth of a live child. If there are significant differences in the donors' and recipients' experiences of known egg donation in such a situation, then knowledge of these implications and issues would be informative for others contemplating pursuing known egg donation. This field of inquiry would also benefit from further investigations of known egg donors experiences when donation occurs between friends or family members other than sisters. It would be interesting to see if there were differences in the post-donation experiences and if those differences were somehow connected to the relationship between donor and recipient. Because it is difficult to access the population of egg donors and recipients outside of clinic settings, it would be beneficial to this area of inquiry if clinicians could maintain continued contact with egg donation participants. This could be done through use of surveys, questionnaires, or interviews conducted over the course of many years. Mamtaining this type of contact could allow for the inclusion of stories which may involve negative aspects of participating in known egg donation. It is just as important that stories of negative experiences, if they exist, be heard as it is that positive experiences be heard. The implications of both types of experiences for counselling are invaluable. L i m i t a t i o n s o f the S t u d y Because participants do not constitute a representative sample of all women who are known egg donors, the research results of this study do not generalize to all known egg donors. Since this is a qualitative study, generalization of the results is not the purpose of the study. Instead the goal of this research was to explore and describe the 117 experiences of women who, after donating eggs to a family member or friend, must live with the consequences of their participation in third party reproduction. The study did not attempt to define the issues that affect all known egg donors, but sought to introduce issues that may need to be examined in pre-donation counselling. Participants of this study have undergone pre-donation counselling, but it is difficult to say whether this counselling is representative of the couroelling all egg donors receive. Though it is consistent with other third-party options, it may be more or less than many other donors obtain. Thus, conclusions drawn from the experiences of these participants should not be assumed to be the experiences of all women who donate their eggs. In addition, all participants in this study donated their eggs to a sister. Thus their experiences may not be representative of the experiences of other known donors, such as those that have donated to a friend or a relative other than a sister. Again, any conclusions drawn from the experiences of these participants should be made with caution. Another limitation regarding the sample of egg donors utilized for this study was with regard to the criteria of successful donation outcome. Since all egg donors experience life after donation regardless of whether their recipients conceived and gave birth to a child, the results of this study will only constitute some understanding of successful post-donation experiences of known egg donors. Research suggests that in cases where a pregnancy is not achieved the outcome can include negative effects on relationships between the donor and the recipient (Fielding et al , 1998). This study does not provide information on the experiences of donors whose contribution did not result in a pregnancy and live birth 118 It was hoped that the number of participants in this study would have been greater. The results of this study are therefore limited to the experiences of three women acting as known egg donors. The fact that some donors were unwilling to share their experiences with the interviewer due to fears over confidentiahty, respect for their recipients' wishes, or other concerns made it difficult to recruit a larger sample of participants. Because the participants of this study agreed to be interviewed about their donation experiences the possibility exists that they did so because their experiences were positive. A limitation to this study exists in that participants were somewhat self selected and the findings may be biased in that perhaps those with more negative experiences did not agree to be interviewed for that reason. A further limitation to this study involved the necessity of conducting the research interviews over the telephone. The fact that participants preferred to be interviewed over the telephone meant that valuable information gleaned from in-person conversations, such as body language and other non-verbal cues, were unavailable to the researcher. The concern over social desirabiUty is another limitation for this and most studies asking individuals to share personal information. In an effort to address this issue, I attempted to ensure participants that I had no desire or intention to judge them, rather my goal was to understand and document their experience as accurately as possible. In addition, each woman was informed of the steps taken to ensure that her identity was protected. Nonetheless, the participants may have put a 'positive spin' on the experiences they shared in an effort to present a heartening picture. The possibility exists that such actions could be undertaken in an effort to quiet those who have negative 119 views of egg donation, or to convince the participants themselves that everything was great. Implications for Policy-makers Although it is not incumbent upon me to make policy statements, I feel that the results of this study ought to be considered by those making decisions regarding future egg donation policies and legislation. In 1993, the federal government established The Royal Commission on New Reproductive Technologies. They were "given the task of recommending how new reproductive technologies should be handled in this country" (Proceed with Care, vol 1, p. xxvii). The authors did an admirable job of compiling the attitudes of many different Canadians on many different reproductive and genetic technology issues into their final report. Unfortunately the section of their report devoted to egg donation bares a glaring omission: not a single egg donor or egg donation recipient was polled. Instead, this chapter details the attitudes of practitioners and other Canadians who are "concerned about the circumstances under which donations are made and the implications of donations for the people concerned" (p. 582). Some of the concerns documented included: fear over women being pressured to donate, worry over a woman's autonomy (i.e. donations made to ensure women have access to their own fertility treatment), the health risks associated with fertility drugs, compensation and anonymity issues, as well as other social and family implications. These speculations then formed the basis of the Commission's recommendations for future egg donation legislation. While I am not disagreeing with the Commission's process of hearing from all those that wished their opinions to be heard, it is evident that those who have participated in the very practice the authors were seeking to report on are loathe to 120 disclose such participation to the general public. I believe it is incumbent upon the policy-makers to seek out the views of all stakeholders, not just those that wish to express their opinions. Although my study documents the views of only three egg donors, this is three egg donors more than the Royal Commission included in their final report. It is my belief that any future consideration of social policy or legislation regarding egg donation and other forms of new reproductive technologies be informed by those that have actually participated in the procedure. Speculations of possible outcomes should not hold more prominence than the actual lived experiences of individuals who have utilized these new reproductive technologies. In an effort to address this shortcoming, I plan to forward a copy of the article summarizing this thesis to the Chair of this committee. Conclusion It is my hope that the results of this explorative study will contribute meaningful and practical additions to the body of infertility treatment literature. 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Infertility counselling: A comprehensive handbook for clinicians. New York: The Parthenon Publishing Group 1 Thank you for taking the time to read this letter and for considering this study. Your participation could be important for future egg donors and recipients. I look forward to hearing from you soon. Sincerely, Alanna Winter Master of Arts Graduate Student, UBC 130 Interview Questions General Research Question What is the meaning and experience, short and long-term, of women whose donation of eggs to a friend or family member has resulted in the birth of a child? Probes 1. How did it happen that... ? 2. How did you feel about... ? 3. Please tell me more about... ? 4. You mentioned Could you please say more about that? 5. What do you mean by ? 6. Is there anything more you would like to add about that? Backup Questions Pre-donation • How did you first hear about egg donation? • What led you to consider becoming an egg donor? • What sort of thoughts and feelings did egg donation bring up for you? • Can you tell me about your relationship with your sister/recipient before egg donation became a consideration? • How would you characterize your relationship with your sister/recipient? • How would you characterize your relationship with your sister/recipient's partner? • What sort of expectations did you have of egg donation? • What, if any, hopes, fears, worries... did you have regarding participation in egg donation? • What prompted you to decide to donate your eggs to your sister/recipient? • Can you describe the process around making that decision (for example, did it require a lot of thought, soul-searching...)? • Did counseling bring up any thoughts or feelings for you about possible implications? What were they? • How did counseling effect your decision? • Was anyone else involved in helping you make your decision? • Who did you tell, if anyone, that you were considering donating your eggs to your sister/recipient? Donation Process • Once the decision to donate was made, how were things between you and your sister? How would you characterize the relationship at that point? 131 • What were your expectations? • Who else, if anyone, was told of the egg donation? What were their reactions? How did you deal with that? • What was your experience of the donation procedure? How did you handle the medications? Were there physical or emotional effects? • Are there any aspects of the donation procedure you would change or think could be changed to make it easier on the donor? • Was the procedure successful the first time? What were your thoughts/feelings about repeating the procedure if it wasn't successful the first time? Pregnancy • After the procedure was complete and your sister/recipient received the fertilized egg, what were you feeling? • Can you describe what it was like for you during your sister's pregnancy? • How involved in your sister life were you following the egg donation procedure? • What was your relationship with your sister like during the pregnancy? How would you characterize it? • If there were other family members or friends who knew about the donation, what were your relationships like with them? • How would you describe your thoughts and feelings during the pregnancy? Birth • How did you hear about the birth of the baby? • Can you describe your feelings when you heard about the birth? • What sort of expectations did you have concerning your role in their lives? • What sort of hopes, dreams, fears, worries did you have at this point? • What did you feel when you first looked at the baby? • How would you describe your relationship with your sister after the birth of the child? • How old is the child now? • How would you describe your relationship with the child? What has it been like watching the child grow up? • Have there been any troublesome times? • Has anyone been told of your donation since? What sort of reaction occurred? • Is there a metaphor that you can think of to describe how you have experienced being an egg donor for your sister? • How do you feel about yourself as an egg donor? 132 Future • What do you anticipate your relationship with your sister to be in the future? • What do you anticipate your relationship with the child to be in the future? • Do you anticipate any difficulties in the future? • Knowing what you know now, would you donate your eggs to your sister if you had it all to do over again? • What advice would you give to someone contemplating egg donation to a family member or friend? • What, if anything, do you think the child should be told about his/her origins? • Would you be willing to let the child know your role in his/her creation? 


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