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Untapped ethical resources for neurodegeneration research Robillard, Julie M; Federico, Carole A; Tairyan, Kate; Ivinson, Adrian J; Illes, Judy Jun 2, 2011

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RESEARCH ARTICLE Open AccessUntapped ethical resources forneurodegeneration researchJulie M Robillard1†, Carole A Federico1†, Kate Tairyan1†, Adrian J Ivinson2 and Judy Illes1*AbstractBackground: The research community has a mandate to discover effective treatments for neurodegenerativedisorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challengesplace ever greater demands on investigators to be accountable to the public and to answer questions about theimplications of their work for health care, society, and policy.Methods: We surveyed US-based investigators involved in neurodegenerative diseases research about how theyvalue ethics-related issues, what motivates them to give consideration to those issues, and the barriers to doing so.Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them tocomplete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transformindividual survey questions into a smaller set of factors, and linear regression to understand the effect of keyvariables of interest on the factor scores.Results: Ethics-related issues clustered into two groups: research ethics and external influences. Heads of researchgroups viewed issues of research ethics to be more important than the other respondents. Concern about externalinfluences was related to overall interest in ethics. Motivators clustered into five groups: ensuring publicunderstanding, external forces, requirements, values, and press and public. Heads of research groups were moremotivated to ensure public understanding of research than the other respondents. Barriers clustered into fourgroups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack ofethics resources was a particular barrier for investigators working in drug discovery.Conclusions: The data suggest that senior level neuroscientists working in the field of neurodegeneration (ND),and drug discovery specifically, are motivated to consider ethics issues related to their work, but the perceived lackof ethics resources thwarts their efforts. With bioethics centres at more than 50% of the institutions at which theserespondents reside, the neuroscience and bioethics communities appear to be disconnected. Dedicated ethical,legal and social implications (ELSI) programs, such as those fully integrated into genetics and regenerativemedicine, provide models for achieving meaningful partnerships not yet adequately realized for scholars andtrainees interested in drug discovery for ND.BackgroundNeurodegenerative disease is an umbrella term for ill-nesses caused by the progressive loss of neurons andtheir associated functions. This category of diseasesincludes well known disorders such as Alzheimer’s dis-ease, Parkinson’s disease and multiple sclerosis, as wellas less prevalent diseases such as amyotrophic lateralsclerosis (ALS) and Huntington’s disease. The dramaticand debilitating nature of these diseases, the rise in pre-valence associated with an aging population, and thegeneral absence of effective treatments [1,2] place themincreasingly in the public eye [3]. Despite the failure todiscover disease-modifying treatments for most neuro-degenerative diseases, the neurobiology research com-munity has in recent years made important advances inthe understanding of the root causes of these disordersand possible therapeutic directions [4,5]. There aremore active clinical trials ongoing than ever before andmany investigators are optimistic that new preventive* Correspondence: jilles@mail.ubc.ca† Contributed equally1National Core for Neuroethics, Division of Neurology, University of BritishColumbia, Vancouver, BC, CanadaFull list of author information is available at the end of the articleRobillard et al. BMC Medical Ethics 2011, 12:9http://www.biomedcentral.com/1472-6939/12/9© 2011 Robillard 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.and therapeutic options will emerge over the next dec-ade [6,7]. As research progresses, public and stakeholderexpectations about technology and drug discovery willinevitably intermingle with those of the neurosciencecommunity and generate a variety of ethical issues. It isimperative, therefore, that the societal concerns sur-rounding potential implications of new findings be inte-grated into the earliest stages of research. The verynature of neurodegenerative diseases, including theirslow but unstoppable progression, the vulnerability ofthe patient populations, concerns over genetic testingand other diagnostic tools, the prospect that drugs maybe used to enhance cognitive function, and the myriadof decisions along the path from bench to bedsidemakes this field of neuroscience research especially vul-nerable to a broad spectrum of ethical issues [8].Unfortunately, research ethics are commonly misun-derstood to be synonymous with administrative burdensrather than understood as a commitment to the moralimplications of research [9]. Regulatory requirementspoorly aligned to the specific needs of researchers haveundermined efforts to integrate ethics into the researchprocess itself. As a result, a significant gap has emergedbetween laboratory neuroscience research and the socie-tal impact of that research [10].A growing body of literature addresses the need forneuroscientists to identify and examine the societalimplications of their research [11-13]. The relativelynew field of neuroethics, at the intersection of biomedi-cal ethics and neuroscience, is aimed at assessing theethical, legal and social policy implications of research,and is becoming increasingly visible on the internationalneuroscience scene [14]. As neuroscience plays anincreasingly significant role in society, prompting newunderstandings of people as social and moral beingsalongside discoveries of the failures and vulnerabilitiesof the nervous system, neuroscientists must engage in adiscussion of their science and the implications of theirwork. In the present study, we have characterized themotivators, barriers and priorities for integrating ethicsin a cross-section of principal investigators (PIs), facultymembers, students and professional staff whose workspecifically involves research in neurodegeneration.MethodsUsing the NIH CRISP database, a searchable database offederally funded research grants of the US-basedNational Institutes of Health (NIH), and the RePORTERquery tool, we identified 1,034 researchers who heldactive grants with project descriptions containing thekey word string “neurodegen*”. In order to characterizethe most current research activity, we restricted thesearch to grants awarded between 2007 and 2009. Weinvited researchers based in the United States who metthese criteria to participate in an online survey.Researchers received their invitation by email and wereasked to forward the invitation to students, postdoctoralfellows and staff on their research teams. Participationwas anonymous and voluntary. All required approvalsfor this study were obtained from the University of Brit-ish Columbia Behavioural Research Ethics Board.The online survey contained 25 open and close-endedquestions organized into three sections: I. Ethics in neu-rodegenerative disease research, II. Motivators and bar-riers, and III. Current research and background (seeSupplementary material). The questions were aimed atcharacterizing the importance of ethics issues research-ers encounter in their work, as well as both motivatorsand barriers to the inclusion of ethics into neurodegen-erative disease research. The identification of factorswas guided by prior empirical work on ethics in neuroi-maging [15] and finalized in consultation with membersof our research team. Answers were either multiplechoice or based on a five-point Likert scale, and respon-dents were encouraged to add free-text narrative con-tent to augment their answers.To better understand the structure of our data set, weapplied exploratory factor analysis to the survey data.This strategy pares down the original large set of surveyitems into a smaller set of factors, enabling a meaningfulinterpretation of results. We used exploratory factoranalysis with a varimax rotation to ensure that eachindividual factor can be described by a linear combina-tion of a few functions and analyzed the data separatelyfor each of three categories of ethics-related items: prio-rities (issues), motivators and barriers. For each cate-gory, we retained all factors with a correspondingeigenvalue greater than 1. This process ensures adher-ence to the Kaiser rule and the appropriate selection ofa number of factors that is less than the number neededfor perfect reconstruction. We determined samplingadequacy using the Kaiser-Meyer-Olkin (KMO) test toassess the magnitude of partial correlations among vari-ables. For each of the three categories, the KMO test ledto a value greater than 0.8; 0.3 greater than the 0.5required for satisfactory testing. We additionally usedBartlett’s method to obtain unbiased estimates of thefactor scores for each respondent. These scores werecomputed as a weighted sum of the original variables. Inorder to understand the effects of the variables of inter-est on factor scores, we applied a linear regressionmodel with factor scores as independent variables andvariables of interest as predictors.ResultsDemographics of the study populationOne hundred and ninety three (193) neuroscientistsresponded to the survey (see Table 1); 62% (119)Robillard et al. BMC Medical Ethics 2011, 12:9http://www.biomedcentral.com/1472-6939/12/9Page 2 of 7reported as male and 36% (70) female. Ages rangedbetween <30 (n = 12, 6%), 31-50 (n = 108, 56%) and51 and over (n = 65, 34%). A majority of respondents (n= 154, 80%) were at the faculty level. Others were grad-uate or medical students (n = 17, 9%), postdoctoralfellows (n = 10, 5%) and research staff (n = 5, 3%). Amajority of respondents had attained a PhD and/or anMD degree (n = 174, 90%), n = 10 (5%) held a BA orBS equivalent, and n = 7 (4%) held with an MA or MSequivalent. 158 (82%) respondents described themselvesas the head of their research group.Half of the respondent pool indicated that they carriedout drug discovery research (50%, n = 97), 25% (n = 48)regenerative medicine research, and 41% (n = 80) classi-fied their type of research as “other” (for example,mechanism of disease and biomarker discovery).Respondents had the opportunity to select more thanone type of research.Participants identified their research subjects ashealthy adults (19%, n = 37), adults with neurodegenera-tive diseases (33%, n = 64), non-human primates (38%,n = 74), other animals (69%, n = 134), or other (forexample, cell culture; 83%, n = 161). Disease focus wasAlzheimer’s (51%, n = 98), Parkinson’s (26%, n = 51),Huntington’s (20%, n = 38), ALS (17%, n = 32), multiplesclerosis (7%, n = 13), and a range of others (37%, n = 71)(e.g., frontotemporal dementia, prion diseases).Ethics-related issuesExploratory factor analysis revealed that ethics-relatedissues grouped together under two major factors (Table2): research ethics (accounting for 36.5% of the variance)and external influences (accounting for 23% of the var-iance). The research ethics factor included subject confi-dentiality (loading of 0.98), privacy (loading of 0.96), andobtaining informed consent (loading of 0.90). The sec-ond factor, external influences, included governmentand public research sponsors (loading of 0.69) and theinfluence of industry sponsorship on the direction andthe topic of the research (loading of 0.67). Regressionanalysis demonstrated that participants in differentresearch roles attributed different levels of importanceto ethical issues: heads of research groups (n = 158)viewed issues surrounding research ethics to be signifi-cantly more important than the other respondents(p = 0.01) (Table 3). We also found that overall interestin ethics had the highest effect on concerns about exter-nal influences (p < 0.01).Open-ended comments suggested that communicationof results represents an additional ethical concern inneurodegenerative disease research. One investigatorcommented on science communication in the media:“Media usually provide uneducated information to (the)public” [Respondent #32]. In terms of disseminatingresults specifically to stakeholders, another researchercommented on the difficulty of assessing what, whenand how to disclose research results to subjects: “Patern-alism in withholding versus difficulty (in) accuratelypresenting scientific uncertainty” [Respondent #45]. Sev-eral researchers (n = 21) commented on issues of ethicsin animal care: “(...) the ethical care and use of animalsis important” [Respondent #21]. Open-ended narrativeresponses also indicated that conflict of interest repre-sents an ethical issue in the field of neurodegenerativeresearch, but opinions about this varied. For example,one respondent indicated that the “...pendulum has nowswung too far at some academic institutions on conflictof interest rules. We must now anticipate a year inadvance what might possibly maybe lead to a financialinterest.” [Respondent #11]. Another wrote anopinion to the contrary, on the issue of “authors notadequately disclosing potential conflict of interests”[Respondent #150].Ethics-related motivatorsEthics-related motivators grouped under five factors(Table 2). The first, ensuring public understandingTable 1 Demographics of study population.Age N (%) Research Area N (%)<30 12 (6%) Drug discovery 97 (50%)31-50 108(56%)Other (e.g., basicresearch)80 (41%)51+ 65 (34%) Regenerative medicine 48 (25%)Gender Research FocusMale 119(62%)Other (e.g., cell culture) 161(83%)Female 70 (36%) Other animals 134(69%)Professional Level Non-human primates 74 (38%)Faculty 154(80%)Adults with ND disease 64 (33%)Graduate or MedicalStudent17 (9%) Healthy adults 37 (19%)Post-doctoral Fellow 10 (5%) Disease FocusResearch Staff 5 (3%) Alzheimer’s 98 (51%)Highest DegreeAttainedOther 71 (37%)PhD and/or MD 174(90%)Parkinson’s 51 (26%)BA, BS or equivalent 10 (5%) Huntington’s 38 (20%)MA, MS or equivalent 7 (4%) ALS 32 (17%)Head of ResearchGroupMS 13 (7%)Yes 158(82%)No 33 (17%)Robillard et al. BMC Medical Ethics 2011, 12:9http://www.biomedcentral.com/1472-6939/12/9Page 3 of 7Table 2 Exploratory factor analysis: Ethics-related issues, motivators and barriers.Domain Clusters of Factors % ofVarianceCumulative % ofVarianceFactor Description FactorLoadingsEthics RelatedIssuesTraditional ResearchEthics36.5% 36.5% Recruiting subjects representing vulnerablepopulations (a)0.71Unrealistic expectations about benefits of the researchby subjects (b)0.65Subject confidentiality (c) 0.98Privacy of subjects (d) 0.96Obtaining informed consent (e) 0.90Equal access to research for all eligible subjects (f) 0.77Safety of the method in use (h) 0.62Clinical findings detected unexpectedly (i) 0.69External Influences 22.7% 59.2% Commercial conflict of interest (e.g., timing oftechnology roll out) (k)0.63Priorities of government/public research sponsors (l) 0.69Influence of industry sponsorship on direction andtopics (m)0.67Opinion of media and stakeholders (n) 0.63Opinion of colleagues (o) 0.52Effect of patents on publication and release of data(p)0.66Motivators Ensuring PublicUnderstanding15.9% 15.9% Mitigating false hopes or expectations by subjects (m) 0.77Better informed public and policies (n) 0.75Patients’ right to be informed about neuroscienceadvances (o)0.92External Forces 14.6% 30.5% Professional advancement (d) 0.78Institutional encouragement (e) 0.50Chance of publication success (f) 0.78Positive perception by clinicians (g) 0.59Requirements 13.0% 43.5% Institutional encouragement (e) 0.55Requirement by the institution where you work (h) 0.99Requirement by research sponsors (i) 0.69Values 10.5% 54.0% Personal values/seems like the right thing to do (a) 0.83Good citizenship (c) 0.59Press and Public 8.7% 62.7% Coverage in the press (k) 0.53Positive public perception (l) 0.77Barriers Resources 19.3% 19.3% Lack of relevant ethics resources (f) 0.92Lack of access to colleagues with ethics expertise (g) 0.64Burden 17.4% 36.7% Increased administrative work (a) 0.72Lack of time (e) 0.72Concern 15.7% 52.4% Ethics is not a relevant or effective tool for my field ofresearch (b)0.56Not your job (c) 0.85Interest 14.8% 67.2% Lack of individual interest in ethics (h) 0.74Lack of interest in ethics among neurosciencecolleagues (i)0.67Robillard et al. BMC Medical Ethics 2011, 12:9http://www.biomedcentral.com/1472-6939/12/9Page 4 of 7(accounting for 15.9% of the variance), included a per-son’s right to be informed about neuroscience advances(loading of 0.94) and mitigating false hopes or expecta-tions by research subjects (loading of 0.77). The secondfactor, external forces (14.6% of the variance), includedthe motivators of professional advancement (loading of0.78), chance of publication success (loading of 0.78),and institutional encouragement (loading of 0.5). Thethird factor, requirements (13% of the variance),included obligations to the research institution (loadingof 0.99) and to research sponsors (loading of 0.69). Thefourth factor, values (10.5% of the variance), includeditems such as personal values, and the feeling that beingconcerned with ethics is “the right thing to do” (loadingof 0.83). The fifth and final factor was press and public(8.7% of the variance), and included motivators relatedto coverage in the press (loading of 0.53) and positivepublic perception (loading of 0.77).Regression analysis highlights an important and signif-icant effect for professional seniority: heads of researchgroups were more motivated to ensure public under-standing of their research than the other respondents(p < 0.01) (Table 3). On this same factor of publicunderstanding of research, we noted that femaleresearchers rated the importance of matters of publicunderstanding of research more highly than maleresearchers (p = 0.02). Other motivators included bothfactors that tie in with public opinion, such as “Increasein donations” [Respondent #29] as well as factors thattie in with the implications of the research for society,such as “Influence on legal developments and regula-tions” [Respondent #140]. Two respondents also high-lighted a personal motivation to consider ethics inresearch: “... own dedication to trying to cure diseases”[Respondent #152].Ethics-related barriersBarriers to the consideration of ethics in neurodegenera-tive disease research grouped under four factors:resources (lack of resources and expertise, accountingTable 3 Linear regression model: Effect of variables of interest on factor scores.CovariatesGender Subjects ResearchTypeHead ofResearchGroupPosition Interest inEthicsEthicsConsultationResearchGoalFemale Non-HumanAnimalsOther(e.g., cellculture)Basic Yes AssociateProf/AssistantProfPostdoc/GradStudentHighlyInterestedProfessional DrugDiscoveryFactorsIssuesTraditionalresearch ethics-0.05(p = 0.78)-0.32(p = 0.09)-0.14(p = 0.67)-0.06(p = 0.76)0.04(p = 0.94)0.47(p < 0.01)-0.22(p = 0.70)0.15(p = 0.36)0.39(p < 0.05)-0.00(p = 0.99)External forces -0.30(p = 0.13)0.17(p = 0.41)-0.02(p = 0.96)-0.23(p = 0.32)0.72(p = 0.19)-0.25(p = 0.22)0.44(p = 0.49)0.64(p < 0.01)-0.27(p = 0.17)0.15(p = 0.43)MotivatorsEnsuring publicunderstanding0.55(p < 0.01)-0.36(p = 0.06)-0.67(p < 0.05)-0.03(p = 0.87)0.84(p = 0.07)0.14(p = 0.44)0.57(p = 0.30)0.20(p = 0.24)0.24(p = 0.18)0.26(p = 0.13)External forces -0.11(p = 0.58)-0.01(p = 0.97)-0.08(p = 0.83)0.31(p = 0.22)-0.05(p = 0.93)0.36(p = 0.10)0.56(p = 0.36)0.05(p = 0.79)0.03(p = 0.89)0.03(p = 0.88)Requirements -0.07(p = 0.70)-0.15(p = 0.41)0.01(p = 0.97)0.19(p = 0.37)-0.87(p = 0.06)0.29(p = 0.12)-0.36(p = 0.51)-0.06(p = 0.72)0.24(p = 0.19)-0.00(p = 0.99)Values 0.15(p = 0.44)0.14(p = 0.53)0.17(p = 0.66)-0.13(p = 0.59)-0.54(p = 0.31)0.01(p = 0.96)-0.54(p = 0.39)0.41(p < 0.05)0.06(p = 0.78)-0.15(p = 0.45)Press andpublic-0.15(p = 0.46)0.10(p = 0.66)-1.02(p < 0.01)-0.21(p = 0.39)0.17(p = 0.75)-0.18(p = 0.40)0.18(p = 0.78)-0.00(p = 0.99)0.14(p = 0.51)-0.02(p = 0.91)BarriersResources 0.07(p = 0.72)-0.18(p = 0.35)-0.19(p = 0.60)0.11(p = 0.59)-0.01(p = 0.99)-0.22(p = 0.25)0.20(p = 0.72)0.24(p = 0.15)0.20(p = 0.27)0.34(p = 0.06)Burden -0.12(p = 0.57)-0.52(p < 0.05)-0.48(p = 0.27)0.11(p = 0.65)-0.10(p = 0.85)-0.05(p = 0.83)-0.54(p = 0.41)-0.12(p = 0.55)0.22(p = 0.31)0.02(p = 0.92)Concern -0.57(p < 0.01)0.48(p < 0.05)0.21(p = 0.59)0.09(p = 0.69)-0.39(p = 0.43)0.09(p = 0.65)-0.80(p = 0.18)-0.35(p = 0.06)-0.54(p < 0.01)0.16(p = 0.41)Interest -0.13(p = 0.56)0.05(p = 0.84)0.05(p = 0.90)0.07(p = 0.80)0.72(p = 0.21)0.31(p = 0.17)0.78(p = 0.25)-0.33(p = 0.11)0.13(p = 0.55)0.16(p = 0.46)Robillard et al. BMC Medical Ethics 2011, 12:9http://www.biomedcentral.com/1472-6939/12/9Page 5 of 7for 19.3% of the variance), burden (lack of time andincreased administrative work; 17.4% of the variance),concern (ethics are not relevant to the research; 15.7% ofthe variance) and interest (lack of interest in ethics fromresearcher and colleagues; 14.5% of the variance). A sali-ent significant finding from the regression analysis withthese factors is that a perceived lack of ethics resourcesis a barrier for investigators working in the area of drugdiscovery (p < 0.05). The open-ended comments aboutethics-related barriers contributed by respondents spoketo both the perceived fundamental nature of bioethics,as one respondent wrote: “Teaching bioethics sometimesseems like teaching right from wrong” [Respondent#122] as well as to the practical implications of incor-porating ethics into research: “(There is a) lack ofunderstanding by IRB (...) members regarding practicallimitations and time tables that impact research”[Respondent #131].DiscussionThe data presented here suggest that senior level neu-roscientists working in the field of neurodegenerativediseases are motivated to consider ethics issues relatedto their work. In addition, these researchers are moti-vated to ensure public understanding of their research.However for researchers specifically in the area of drugdiscovery, we found that a perceived lack of ethicsresources is a significant barrier to pursuing these inter-ests and goals.These findings closely mirror those of a related studyby our group carried out in the field of neuroimaging[15]. Data from that study and others suggest thatresearchers see ethics as complex, overregulated, andoverly time consuming [15,16]. However, considerabledifferences also exist between our neurodegenerationresearch study and the neuroimaging study. Neuroima-ging trainees rate indifference as a significant barrier, aswell as a lack of ethics resources. In contrast, we findthat in neurodegeneration research, the lack of ethicsresources acts as a barrier for researchers in drug dis-covery regardless of professional level. Similarly, gendereffects were present in both cohorts of researchers butdiffer in valence. The data from the present study sug-gest that female researchers rate matters of publicunderstanding of research more highly than maleresearchers. In the neuroimaging study, female research-ers rated issues such as recruitment, confidentiality andprivacy of human subjects more highly than maleresearchers, tended to value trust and reciprocity morethan male researchers, and considered indifference to beless of a barrier than the male researchers. There wespeculated that the source of the effect may be asso-ciated with the leadership and organizational skills ofwomen that underscore the importance of positivegroup dynamics and mutual respect [17]. This is expla-nation may apply to the present results as well, althoughmore study of this phenomenon is clearly needed. Thereis also some evidence for a distinctively feminine moralvoice. According to Gilligan, whereas the typical malemoral voice speaks the language of justice, rights, andrules, the female moral voice speaks a language of carethat emphasizes relationships and responsibilities [18].These findings are controversial, but could explain thegender effect observed.Finally, while both cohorts represented North Ameri-can investigators involved in neuroscience research, ourdata also suggest that differing ethical issues may existfor different subspecialties and present different barriersto the consideration of ethics in the appropriateresearch context.We recognize the limitations of the study. Ourresponse rate was 19%. The sample was not randomand was limited to investigators holding governmentgrants in the United States. As well, responses likelyreflect the views of researchers with a pre-existing inter-est in ethics. These characteristics limit the generaliz-ability of our results to the broader community ofneuroscience researchers. We also acknowledge thatsome of our survey questions were tailored to investiga-tors who work with human subjects, and therefore maynot have been appropriate to our entire sample. In par-ticular, investigators who work with animals identifiedanimal welfare as an additional ethical consideration, anissue that we plan to address in future work. Finally, ourcurrent work does not deliver a quantitative measure ofthe degree to which the issues and barriers identifiedimpact research. Future studies of larger cohorts and in-depth interviews with researchers will serve to expandour findings and will provide a more detailed ethicallandscape for neurodegeneration research.ConclusionWhile is it worthwhile to identify the barriers and themotivators for the consideration of ethics in neu-roscience research, it is equally important to proposesolution-oriented strategies to address the issues uncov-ered. This is especially relevant in the face of the grow-ing prevalence of age-associated neurodegenerativediseases and the growing need for new approaches todiagnose, treat and prevent these conditions. We agreewith Samarasekera [19] who, in a recent opinion piece,encouraged the development of meaningful partnershipsbetween neuroscientists and ethicists. As junior scien-tists today represent the investigators of tomorrow, it isalso essential to develop and integrate relevant ethicscurricula into graduate training [20]. Finally, the formalethics review process would greatly benefit fromenhanced communication channels between theRobillard et al. BMC Medical Ethics 2011, 12:9http://www.biomedcentral.com/1472-6939/12/9Page 6 of 7institutional review boards and ethics committees andthe investigators themselves. Improved communicationbetween ethicists and neuroscientists beyond the institu-tional review board requirements will lead to a betterunderstanding of the ethics needs of the research com-munity and have a positive impact on research conduct,public understanding of science and, ultimately, publicpolicy.AcknowledgementsSponsored by the Foundation for Ethics and Technology and co-supportedby CIHR (CNE#85117), BCKDF and CFI. We thank Dr. Peter Reiner at theNational Core for Neuroethics, UBC, for valuable input to the manuscript,and Reviewers for thoughtful comments.Author details1National Core for Neuroethics, Division of Neurology, University of BritishColumbia, Vancouver, BC, Canada. 2Harvard NeuroDiscovery Center, HarvardMedical School, Boston, MA, USA.Authors’ contributionsJR participated in the interpretation of the data and authored the first draftof the manuscript. JI and AJI conceived of the study, and participated in itsdesign and coordination and helped to draft the manuscript. KT and CFcarried out the survey, participated in the analysis of the data, and helped todraft the manuscript. All authors read and approved the final manuscript.Competing interestsThe authors declare that they have no competing interests. They declarethemselves to be independent of funders.Received: 5 January 2011 Accepted: 2 June 2011 Published: 2 June 2011References1. Ballard C, Gauthier S, Corbett A, Brayne C, Aarsland D, Jones E: Alzheimer’sdisease. Lancet 2011.2. Mayeux R, Denaro J, Hemenegildo N, Marder K, Tang MX, Cote LJ, Stern Y:A Population-Based Investigation of Parkinson’s Disease With andWithout Dementia: Relationship to Age and Gender. Arch Neurol 1992,49:492-497.3. Cutler SJ, Hodgson LG: Anticipatory Dementia: A Link Between MemoryAppraisals and Concerns About Developing Alzheimer’s Disease. TheGerontologist 1996, 36:657-664.4. Ross CA, Tabrizi SJ: Huntington’s disease: from molecular pathogenesis toclinical treatment. Lancet Neurol 2011, 10:83-98.5. 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