Awareness of risks of biobank research may affect public attitudes toward consent
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CORRESPONDENCE
Awareness of risks of biobank research may affect public attitudes toward consent Sean Nurmsoo & Molly Hayes
Received: 11 August 2014 / Accepted: 21 January 2015 # Springer-Verlag Berlin Heidelberg 2015
Correspondence In their recent paper, Botkin et al. (2014) contribute muchneeded data on public attitudes toward genetic research and the use of residual tissues for scientific research. Informed consent is a critical factor affecting public acceptance of biobanks for genetic research. The authors claim, Bbiobankdependent research has been safe, with no published reports, to our knowledge, of harm to individuals from breaches of privacy or confidentiality.^ This premise is used to justify the researchers’ decision to present the opt-out consent model to participants as the Bpreferred^ consent model, with which focus group participants can disagree if they so choose. Yet, there exist at least two cases in the literature in which research participants perceived themselves harmed through breach of privacy in biobank-dependent research. One is Beleno et al. v. Texas Department of State Health Services, in which bloodspots from newborns were placed in a biobank for future genetic research without parental consent (Carnahan 2011). In this case, the plaintiffs objected to the non-consensual seizure and storage of genetic material. They argued it should be a parent’s decision whether their infant contributes to a biobank, and that the banking of samples without consent constituted unreasonable search and seizure (Carnahan 2011). The S. Nurmsoo (*) Department of Pediatrics, Dalhousie University, 1256 Barrington St., 4th Floor, PO Box 15000, Halifax, Nova Scotia B3H 4R2, Canada e-mail: [email protected] M. Hayes Department of Mathematics and Statistics, Department of Psychology and Neuroscience, Dalhousie University, Halifax, Nova Scotia, Canada
case was settled out of court when the State agreed to destroy over four million banked blood samples and disclose all financial transactions involving the samples (Carnahan 2011). Another case of perceived harm resulting from biobank research is Havasupai Tribe v. Arizona State University Board of Regents, in which genetic material taken from Havasupai tribe members, with consent for the purpose of studying diabetes, was used to study schizophrenia, alcoholism, and inbreeding. This was done contrary to participants’ wishes and without consent (Mello and Wolf 2010). This case, too, was settled out of court when Arizona State University Board of Regents agreed to compensate the Havasupai $700,000, return all blood samples in the university’s possession, return all documents containing research derived from those samples, terminate IRB approvals for all existing and new research using the samples, and provide a list of entities to which samples had been transferred (Drabiak-Syed 2010). Sources of perceived harm in this case include the use of genetic materials for research without consent, and encroachment on the tribe’s privacy, dignity, and culture (Drabiak-Syed 2
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