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Neuroethics, confidentiality, and a cultural imperative in early onset Alzheimer disease: a case study… Stevenson, Shaun; Beattie, B L; Vedan, Richard; Dwosh, Emily; Bruce, Lindsey; Illes, Judy Oct 16, 2013

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RESEARCH Open AccessNeuroethics, confidentiality, and a culturalimperative in early onset Alzheimer disease:a case study with a First Nation populationShaun Stevenson1, B Lynn Beattie2, Richard Vedan3, Emily Dwosh4, Lindsey Bruce1 and Judy Illes1*AbstractThe meaningful consideration of cultural practices, values and beliefs is a necessary component in the effectivetranslation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investmentin biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape,necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease areperceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we arguethat the growing field of neuroethics provides a pragmatic and constructive pathway to guide advancements inneuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue inculturally oriented neuroscience research where it is evident that traditional research ethics must be broadened andthe values and needs of diverse populations considered for meaningful and relevant research practices. A globalapproach to neuroethics has the potential to furnish critical engagement with cultural considerations ofadvancements in neuroscience.Keywords: Confidentiality, Global health neuroethics, Biomedical ethics, First nations, Research ethics, Early OnsetFamilial Alzheimer Disease, Community-based researchIntroductionIn an interdisciplinary effort bridging the clinical neuro-sciences, ethics, and geriatric services, we are engaged incommunity-based research with a First Nation popula-tion in Canada, in which a large family carries apresenilin-1 (PS1) gene mutation leading to early onsetfamilial Alzheimer Disease (EOFAD). Our primary re-search goals are to explore the intersections of Westernknowledge, traditional teachings, and culturally specificunderstandings about EOFAD. Through the evolution ofthis work, we have been faced with and have addressedunexpected internal and external challenges related tocommunity-wide confidentiality. The internal challengesinvolve the Nation’s competing interests to guard againstthe possibility of stigma that may be associated witha predisposition to an incurable neurodegenerativedisease, while also championing the benefits of researchparticipation in a manner that fosters autonomy andself-determination. The external challenges involveachieving comprehensive outreach to individuals at ruraland dispersed regions of the country, varying biologicaland cultural definitions of family, and the interconnec-tedness of family, community, and Nation. Both theinternal and external challenges are of scholarly and pro-cedural importance to the research team and Nation,and of personal significance to the community members.There are ample existing research principles andguidelines that underscore the importance of protectingIndigenous communities; however, their scope is limitedand they do not fully address the practical and con-ceptual challenges of community confidentiality whenengaged in community-based research with a First Nationpopulation. The unique and precarious circumstancesdescribed here highlight the importance of continuouslyrevisiting issues in confidentiality, community-engageddiscovery in the protection of Indigenous peoples in re-search, and the importance of seeking solutions that are* Correspondence: jilles@mail.ubc.ca1National Core for Neuroethics, Division of Neurology, Department ofMedicine, The University of British Columbia, 2211 Wesbrook Mall, KoernerS124, Vancouver, BC, CanadaFull list of author information is available at the end of the article© 2013 Stevenson et al.; licensee BioMed Central Ltd. This is an open access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.Stevenson et al. Philosophy, Ethics, and Humanities in Medicine 2013, 8:15http://www.peh-med.com/content/8/1/15mutually beneficial and supportive. Further, these chal-lenges highlight the requirements for a global approach toneuroethics, which must strive to broaden traditionalWestern research ethics and grapple with these complexconsiderations of culture in neuroscience research.Neuroethics, culture and confidentialityThe intersections of neuroscience, neurotechnology, andsociety raise challenging ethical questions about how re-lated developments may be perceived and utilized acrosscultures. The field of neuroethics addresses the ethicaland legal issues of these innovations and their wide-ranging implications in the public sphere [1]. Whetherdefined as global [2], cosmopolitan [3], or pluralistic,as Giordano and Benedikter state, “neuroethics must beinternational, multi-cultural and multi-disciplinary, andnot simply bound to philosophical dogma or defined bywestern ethical discourse” [1].Through the advancement of a community-based re-search study about the experiences of a First Nationspopulation with EOFAD, challenges of confidentialityhave elucidated the need to broaden traditional Westernunderstandings of research ethics and the integral rolethat neuroethics has in addressing these complex issues.While the case-study provided here offers only a limitedscope of the ethical challenges in culturally relevant re-search, it will allow for further investigation into thecomplex interactions between research in neuroscienceand the diverse populations affected by this research.Issues of confidentiality in health research are wroughtwith concerns both important and complex, and researchinvolving Indigenousa populations that deals with confi-dentiality at the level of the community presents an arrayof unique challenges warranting additional attention. Con-fidentiality in health research has traditionally focused onthe individual, with the patient/research participant at thecenter of ethical and privacy concerns [4]. The individualapproach to ethics is highlighted in frameworks such asthe The Belmont Report, which identifies “respect for per-sons, beneficence and justice” as the basic ethical princi-ples guiding research on humans [5]. Genetics researchhas posed significant challenges to and expanded uponthis individual focus on the protections of confidentiality,“since genetic information by nature is both individualand familial” [6].Different still, is the role of confidentiality in community-based research involving identifiable populations, such asIndigenous communities. The need to protect an entirecommunity, in addition to the individuals and familieswithin the community, challenges the traditional limits ofconfidentiality. For example, New Zealand Maori cultureoperates within a tribal hierarchy in which individualrights, including the right to privacy, may be relinquishedto maintain tribal structure [7]; the Maori cultureemphasizes collectiveness, and even the ownership ofgenes and their mutations may be shared by the entireextended family, or whanau [7]. In Maori and otherIndigenous populations, the Western emphasis on respectfor personal autonomy and individual rights and risks maynot adequately address the broader issues of community-based confidentiality or the integral role that these com-munities play in ensuring their own protection in researchsettings.Research policies and guidelines primarily withinCanada and Australia have been adapted to capture theethical issues raised by the participation of Indigenouscommunities in human subjects research. Canada’sTri-Council Policy Statement 2 (TCPS2) on “ResearchInvolving the First Nations, Inuit and Métis Peoplesof Canada,” for example, seeks to expand the scope of“Concern for Welfare,” and requires, “consideration ofparticipants and […] their physical, social, economic andcultural environments, where applicable, as well as con-cern for the community to which participants belong”[8]. The TCPS2, and similar policy statements, such asthose from the Canadian Institutes of Health Researchand the National Health and Medical Research Councilin Australia, acknowledge the integral role that Indige-nous communities play in protecting the collectiverights, interests and responsibilities that also serve theindividual rights of community members [9,10].Indigenous-specific research guidelines have emergedamidst a sullied history of research with Indigenouspeoples – a history that further emphasizes the need forcommunity confidentiality requirements for protectingidentifiable populations in human subjects research [11].Critics of research conducted in Indigenous communi-ties have identified patterns of cultural insensitivity, lackof community involvement, stigma stemming fromdissemination of results, lack of feedback during the re-search process, and exploitation of communities foracademic or commercial gains, as just a few of the con-cerns that have plagued this research [4,5]. The HumanGenome Diversity Project, for example, came under firefor its attempt to patent Indigenous peoples’ genetic ma-terials, in many cases without their consent or under theguise of other research objectives [12]. A more explicitmisconduct of research with Indigenous peoples wasdemonstrated when blood destined for rheumatic diseaseresearch from the Nuu-chah-nulth First Nation in BritishColumbia was used to investigate ancestry and populationgenetics. The Nations’ genetic materials were essentiallytreated as the researchers’ property, and became thefodder for hundreds of unrelated academic publicationswithout the Nation’s consent or knowledge [13].In discussing the philosophical and pragmatic challengesof protecting communities in research, Weijer writes,“Autonomous communities have their own politics,Stevenson et al. Philosophy, Ethics, and Humanities in Medicine 2013, 8:15 Page 2 of 6http://www.peh-med.com/content/8/1/15beliefs, and values and research may affect any of theseelements” [14]. Indigenous communities have been af-fected negatively by research on many fronts, and beyondthe mandated policies and guidelines already mentioned, anumber of research principals, or codes of conduct, havebeen developed to ensure that work with Indigenouspopulations is done in a “good way” [15]. The NationalAboriginal Health Organization in Canada promotes theprinciples of “OCAP”, ensuring that Indigenous popula-tions maintain Ownership, Control, Access and Possessionof various or all aspects of research within their commu-nities [16]. Further notions of security and inclusion in-clude the guiding principals of protection, participationand partnership [17], and “The 4R’s of Aboriginal Health:”respect, relevance, reciprocity, and responsibility [18].While it is true that “guidelines for the protection ofaboriginal communities in research are prototypical andprobably the most extensive elaboration of protectionsavailable” [19], there remain practical and conceptual chal-lenges in enacting and maintaining the highest degree ofcommunity confidentiality when working on genetic,brain, and health research with a remote and dispersedFirst Nation population. The guidelines and protocolsfor Indigenous research discuss the consideration ofcommunity confidentiality or anonymity in brief, statingsimply that it should be a consideration where stigma is aconcern, and that it should be determined prior to thecommencement of research [8,9]. It is evident from ourstudy that the current scope of Western research ethics isnot always sufficient for engaging in research with cultu-rally diverse, or non-Western populations.The following case study presents some of the prag-matic and conceptual challenges of ensuring communityconfidentiality when conducting health research with aremote and dispersed First Nation population that isat risk for a familial neurodegenerative disease. Thesechallenges highlight the need for a culturally nuancedneuroethics and broadened cultural approaches to re-search in neuroscience.ContextBetween 1998 and 2009, nine members of a First Nationskindred were referred to the University of British ColumbiaHospital Clinic for Alzheimer Disease and RelatedDisorders (UBCH-CARD) for medical assessment in thecontext of a strong family history of early-onset demen-tia [20]. The family originates from a remote rural com-munity, with members dispersed throughout BritishColumbia, the Yukon, and Alberta. Seven of these nineindividuals received clinical diagnoses of possible orprobable Alzheimer Disease (AD). Genetic testing ini-tiated on an affected family member in 2006 identified anovel PS1 gene mutation, thereby confirming a diag-nosis of early-onset familial AD (EOFAD) [21]. Reviewof the family history identified over 100 family membersin direct lineage of affected individuals and at risk ofinheriting this condition [20].The identification of a PS1 mutation in this family raisedconcerns regarding dissemination of information andprovision of clinical services (including neurological andneuropsychological assessments, and genetic counseling)given constraints posed by geography and funding and, atthe same time, introduced potential research and educa-tional opportunities. Through a “Family Day” organized atUBCH-CARD and a health fair held in the Nation’s terri-tories in 2009, the Nation signaled its desire to pursue fur-ther exploration about the disease and embarked on acollaborative endeavour with the UBC National Core forNeuroethics and UBCH-CARD.MethodsThe methodological framework for this project iscommunity-based research, guided by an Indigenousapproach [22]. The approach relies on an infrastructurethat includes a Community Advisory Group made up ofkey members of the Nation’s governance and leadership,a Community-based Researcher whose role is to activelyfacilitate research between the Nation and UBC team,and Community Liaisons who assist in the recruitmentand organization of focus groups and interviews in thegiven territories. Every step of the research is filteredthrough and ushered by the continuous and dynamicinteraction of the UBC team and these key representa-tives of the Nation.The primary data for this project are cultural conceptsand understandings of wellness and disease in aging anddementia collected through focus groups and interviewswith members of the Nation. Issues of confidentiality havearisen during every phase of these research objectives.Findings and discussionSources of concern - confidentiality and community consentConcerns about community confidentiality were capturedearly in the research process and reflected in the ResearchAgreement signed between the Nation and the researchinstitution. The primary concerns were the possibility ofstigma and stereotyping of individuals, families, and thecommunity, and potential discrimination from employersand insurance companies. While these issues are not un-common in research related to genetic diseases, they maybe further amplified when working with Indigenous popu-lations, as research occurs “amidst a historical context ofcultural repression and reduced standards of health careavailability” [23]. Furthermore, Indigenous communitieshave notions of family beyond the traditional biologicalmodel, where concepts such as “all my relations” may beused to explain the interdependency between individuals,family, community and Nation [24]. While geneticStevenson et al. Philosophy, Ethics, and Humanities in Medicine 2013, 8:15 Page 3 of 6http://www.peh-med.com/content/8/1/15diseases such as EOFAD bring the biological definition offamily to the fore, community-based research must under-stand cultural definitions of family at both a communityand individual level.Individuals, families, and the First Nation communityare all affected by the EOFAD mutation under study.While, as Marshall and Berg are careful to emphasize,“community approval does not replace the need for indi-vidual consent” [25], in accordance with the practices ofIndigenous research cited above, the Nation and its repre-sentatives have played a key role in consenting to researchdone within the community. The complex and integralties between individual, family and community raisesignificant questions: What is the effect of maintainingor not maintaining community-wide confidentiality onfamilies and individuals suffering from the disease? Howdoes individual knowledge of the disease affect the com-munity as a whole? How might the research affect familiesand individuals previously unaware of the genetic risk forthe disease?Upon consideration of these and other questions, theResearch Agreement ensures that every effort is made tomaintain the anonymity of the Nation in any publi-cations or presentations of the research endeavour andfindings. All parties have agreed to revisit confidentialitythroughout various stages of the research project. Atpresent, it remains in place for the ongoing protection ofthe community.Protecting or silencing?Despite the overriding pressure to retain the anonymityof the Nation, some individual community membershave signaled their discontent in not having the commu-nity named [26]. These contrasting concerns involve is-sues of self-determination and autonomy, especially inthe face of a history of subjugation within poor researchpractice. Article 3 of the United Nations Declaration onthe Rights of Indigenous Peoples states, “Indigenous peo-ples have the right to self-determination. By virtue ofthat right they freely determine their political status andfreely pursue their economic, social and cultural deve-lopment” [27]. Further, Indigenous peoples in Canadahave constitutional protections of their right to maintaintheir identity and participate as collectives in Canadiansociety [11]. Not naming an Indigenous community inresearch challenges the implementation of these rightsfor some members of the community.While the principles of OCAP are integral to con-ducting research with Indigenous peoples and can beunderstood as “self-determination applied to research”[28], the protections and autonomy that these principlesinstill may be complicated by the application of communityconfidentiality. Writing for the First Nations Centre atthe National Aboriginal Health Organization, Schnarchstates that, “OCAP is not a doctrine or a prescription. Itis a set of principles in evolution,” and therefore mustbe applied in conjunction with the best interests of thecommunity [28].Community-wide confidentiality may challenge theopportunity for members of the Nation to champion ADresearch from an Indigenous perspective, and to be recog-nized for the research contributions of their community.Open dialogue and deliberation on the benefits and harmsof community confidentiality are essential both to ensureadequate protections and to foster self-determinationthrough the evolving and adaptable principals of OCAP.Further, attention to and understanding of culture and theimperative role of a cultural community in the evolutionof the research process are fundamental to conductingculturally-oriented research in neuroscience, and for en-suring that research is both inclusive and culturallyrelevant [1]. This type of community-based research mustfoster an approach to neuroethics that remains responsive,pluralistic and adaptable to the requirements of thecommunity.Confidentiality and knowledge transferGiven the geographic distribution of this First Nationpopulation, comprehensive outreach and disseminationof progress and results is a continuous obstacle requiringstrategic initiatives. The Nation’s traditional territoriesare remote, with individuals living in rural, northerncommunities, and dispersed throughout various regionsof the surrounding cities and provinces.Traditional academic communications are often inad-equate for keeping even urban-based communities up-to-date on research findings, let alone remote and dispersedcommunities for which access to follow up is especiallychallenging. Results not returned to the community, orreturned in inaccessible language, has been identified bymany Indigenous Nations as a significant grievance regard-ing research conducted within their communities [28].Strategic, innovative and creative methods must be em-braced to find solutions to these tensions that are groundedin technological, geographic and social forces.Alongside the integral knowledge transfer enabled bycommunity-based researchers and liaisons, the Internetcan be a useful tool for widespread communication andfor overcoming the logistics of geography. It is not with-out limitation, however, and breaches of confidentialitydue to open access and unregulated networking is a fun-damental concern. Research updates, community-basedjob postings, and recruitment letters posted online allhave the potential to link researchers, individuals, andcommunities unexpectedly and openly to the sensitiveresearch done within the community. The problemis double-edged: specific information enables specific re-cruitment and tailored dissemination of information, butStevenson et al. Philosophy, Ethics, and Humanities in Medicine 2013, 8:15 Page 4 of 6http://www.peh-med.com/content/8/1/15places confidentiality at risk; generalized postings protectconfidentiality but their effectiveness in recruiting andproviding meaningful updates are diminished and limited.While secure web pages are a solution, easy access is thencompromised by the need for passwords and layers ofadministration. Social media platforms, such as privateFacebook groups are also an alternative, but monitoringand security are again a significant challenge.The geographic nature of this community presentsunique challenges to ensuring community protections.Community, in this sense, does not necessarily refer to ageographically fixed population, but rather to a dispersedgroup of people who share a cultural background. Onceagain, engaging such a community requires strong part-nerships and clear understanding of how such a com-munity is defined. Western approaches to communityprotections, even those specifically related to identifiablepopulations, do not adequately address the concerns of anIndigenous community with a population that is locatedremotely, as well as widely dispersed. As Giordano andBenedikter (2012) have argued, “if neuroethics is toauthentically represent a naturalistic orientation to humancognition, emotions and behaviors, then it is essential toappreciate the ways that [cultural] variables and dif-ferences are manifest, and … adopt a more dialecticalapproach” [3]. Thus, a global approach to neuroethics thatis collaborative and culturally-informed will have thepotential to address the unique challenge of communityconfidentiality within a non-Western population.ConclusionWeijer, Gold and Emanuel write, “Codifying protectionsfor communities in research is a dialectical process thatwill require addressing these issues by proposing and re-fining potential safeguards based on conceptual reflectionand practical experience” [19]. Research with Indigenouspeoples has significantly improved with regard to respect,protections, and principles of appropriate conduct, butguidelines must remain flexible and dynamic enough toiteratively incorporate reflection based on experience, andlook to the First Nation populations and communitiesthemselves for best practice initiatives. Aboriginal peopleare one of the fastest growing populations in Canada [29].If scientific and technological advancement is to beoriented towards the public good, socio-cultural valuesand contexts must be considered and incorporated inorder to reflect an increasingly diverse society. A glo-bal approach to neuroethics will ensure that culturalplurality in neuroscience research is recognized andaddressed appropriately. The potential challenges ofnon-Western based practices should not be a deterrentto community-based health research, but rather amotivation for further commitment and dedication tothe advancement of knowledge and the alleviation ofsuffering and disease in a manner that is both inclusiveand culturally relevant.EndnoteaWe use the term Indigenous to refer to the First peo-ples of North America, Australia and New Zealand.Within Canada, these populations include First Nations,Métis and Inuit peoples. We use the term First Nationwhen referring to the specific Indigenous populationwith which we are working. The term Indigenous is akinto Aboriginal or Native American.Competing interestsThe authors declare that they have no competing interests.Authors’ contributionsConcept and design: SS, JI, BLB. Collection and assembly of the data: JI, SS,BLB, LB. Data analysis and interpretation: SS, JI, BLB, ED, RV, LB, Drafting ofthe article: SS, JI, BLB. Critical revision of the article: BLB, JI, RV, ED, LB, SS.Final approval of the article: all authors. Obtaining of funding: JI, BLB. Allauthors read and approved the final manuscript.Authors’ informationSS is the Project Director on Cross Cultural Understandings of Aging andDementia at UBC’s National Core for Neuroethics.BLB is Professor Emeritus, Division of Geriatrics, Department of Medicine,UBC.RV, Secwepemc First Nation, is Associate Professor, School of Social Work,UBC.ED is a genetic counsellor at the UBC Hospital Clinic for Alzheimer Diseaseand Related Disorders and Clinical Instructor in the UBC Faculty of Medicine,Department of Medical Genetics.LB is a PhD student in the Interdisciplinary Studies Graduate Program andNational Core for Neuroethics, UBC.JI is Canada Research Chair in Neuroethics, Director of the National Core forNeuroethics, and Professor of Neurology, Division of Neurology, Departmentof Medicine, UBC.AcknowledgmentsWe would like to acknowledge the First Nation community with which weare working, and the generous support of CIHR (MOP-111240), The NorthGrowth Foundation, and the Vancouver Foundation UNR10-0748. This workwas further enabled by support from CIHR (NCE 85117), the British ColumbiaKnowledge Development Fund, and the Canadian Foundation forInnovation.Author details1National Core for Neuroethics, Division of Neurology, Department ofMedicine, The University of British Columbia, 2211 Wesbrook Mall, KoernerS124, Vancouver, BC, Canada. 2Division of Geriatric Medicine, Department ofMedicine, The University of British Columbia, Vancouver, BC, Canada. 3Schoolof Social Work, The University of British Columbia, 2080 West Mall,Vancouver, BC, Canada. 4Clinic for Alzheimer Disease and Related Disorders,UBC Hospital 2211 Wesbrook Mall, Vancouver, BC, Canada.Received: 11 June 2013 Accepted: 10 September 2013Published: 16 October 2013References1. Giordano J, Benedikter R: An early-and necessary-flight of the owl ofMinerva: neuroscience, neurotechnology, human socio-culturalboundaries, and the importance of neuroethics. J Evol Technol 2012,22:14–25.2. Chen D, Quirion R: From. 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Mentally Healthy Communities: Aboriginal Perspectives. https://secure.cihi.ca/estore/productFamily.htm?pf=PFC1457&lang=en&media=0.25. Marshall PA, Berg JW: Protecting communities in biomedical research.Am J Bioeth 2006, 6:28–2013.26. Brief E: Protecting or silencing: The benefits and harms of communityanonymity. Kelowna, B.C.: Canadian Bioethics Conference; 2010.27. Assembly UG: United nations declaration on the rights of indigenouspeoples. UN Wash 2007, 12:1–18.28. Schnarch B: Ownership, control, access, and possession (OCAP) orself-determination applied to research. J Aborig Heal 2004, 1:80–98.29. Canadians in Context - Aboriginal Population / Indicators of Well-being inCanada. http://www4.hrsdc.gc.ca/.3ndic.1t.4r@-eng.jsp?iid=36.doi:10.1186/1747-5341-8-15Cite this article as: Stevenson et al.: Neuroethics, confidentiality, and acultural imperative in early onset Alzheimer disease: a case study with aFirst Nation population. Philosophy, Ethics, and Humanities in Medicine2013 8:15.Submit your next manuscript to BioMed Centraland take full advantage of: • Convenient online submission• Thorough peer review• No space constraints or color figure charges• Immediate publication on acceptance• Inclusion in PubMed, CAS, Scopus and Google Scholar• Research which is freely available for redistributionSubmit your manuscript at www.biomedcentral.com/submitStevenson et al. Philosophy, Ethics, and Humanities in Medicine 2013, 8:15 Page 6 of 6http://www.peh-med.com/content/8/1/15


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