Ethnocultural community leaders’ views and perceptions on biobanks and population specific genomic research: a qualitative research study

Abstract

Substantial investments were made in population based biobanks over the past decade. Ethnocultural community members are both sponsors and beneficiaries of biobanks. In addition, the success of biobank projects depends on community support and participation. Yet there are few empirical data on views, perceptions and interests of ethnocultural communities on biobanks. This silent gap in genomics, ethics and policy literatures has to be addressed. We conducted a qualitative research study with in-depth interviews of ethnocultural community leaders (e.g., members of the Canadian Parliament, school commissioners) on their perspectives concerning population specific genomics research and biobanks. An equal partnership model where public is not only informed, but also involved in decision-making processes was perceived as an essential democratic requisite. These empirical data on ethnocultural community leaders' views, interests and perceptions identify several key socio-cultural and ethical factors that can be decisive for effective and sustainable community involvement in biobanks.

Scientists’ perspectives on consent in the context of biobanking research

“…And this desire for retaining control is arguably heightened in cases where the research or use of samples and information could be discriminatory or stigmatizing [37][38][39] and when the research goals conflict with cultural or religious beliefs. 40,41 Here, donor support and participation for biobanks might wane for stigmatizing or contentious areas of research and donors would be reluctant to have their samples be freely used and shared with others.…”

“…[37][38][39][40][41] Similarly, people may be disinclined to provide samples and information and have their data shared with organizations they deem less trustworthy including private industry, government and law enforcement agencies, employers, biotech companies, and insurance agencies, 17,18,38,39 On the basis of this rationale, a conceptual proposal was developed that some biobanks, mostly smaller disease-specific biobanks, eg, a cancer biobank, may benefit from incorporating exclusion clauses in their informed consent process. 28 Exclusion clauses are written within informed consent forms and can be explained verbally.…”

Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature

“…54 The most prominent concern of professionals was the complexity of the results, the uncertainty in their interpretation and concerns about the quality of information, including validity and clinical utility of genomic findings. 51,[54][55][56] The public and professionals, in general, agreed that a researcher has the obligation to disclose incidental findings; 47,50,52-54,57 however, Table 2 Data sharing/privacy protection in biobank-based genomic research: main findings Data sharing/privacy protection in biobank-based genomic research (a) Patients and the public had positive attitudes towards biobank-based genomic research and associated genomic data sharing and were mainly altruistically motivated to participate in research [24][25][26][27]29,[33][34][35][36][37][38]42 (b) Data sharing was recognized as a benefit by patients and the public 31,33,36,[40][41][42]49 (c) Patients, the public and professionals expressed privacy concerns focused on insurance, employment, 22,24,39,42,43,45 access to medical care and stigmatization 38,40,[42][43][44] (d) Benefit of data sharing for science and society outweighed potential risks; 40,43 concerns about privacy do not influence willingness to participate in biobank-based genomic research 38,…”

“…33,36,[39][40][41][42] Regarding concerns and potential risks of biobank-based genomic research and associated data sharing, in several quantitative and qualitative studies, the three groups (patients, the public and professionals) expressed different views ranging from no concerns to raising concerns pertaining to insurance, employment, access to medical care, the disclosure of genomic information about ethnic heritage and stigmatization. 22,24,36,38,40,[42][43][44][45] In two qualitative studies, patients assigned higher priority to the benefit of data sharing for science and society than to potential risks. 40,43 Similar findings were reported in quantitative studies with the public.…”

Consent and Research Governance in Biobanks: Evidence from Focus Groups with Medical Researchers

“…[18,22,31]]. They also indicate a growing shift towards better research accountability and the consideration of research participants’ expectations in building more intuitive and adaptive governance models [32,33,34].…”