Obtaining consent for genetic studies can be an opportunity for researchers to foster respectful engagement with participants, not merely to mitigate legal risk. This shift is proposed in a policy forum appearing tomorrow, Jan. 21, in Science, the journal of the American Academy for the Advancement of Science.
The authors of the article, "Research Practices and Participant Preferences: The Growing Gulf" recommend new approaches that treat participants as true stakeholders in research, who willingly take on risks because they believe the potential benefits to society outweigh potential harms. Current practices presume that study participants don't want to hear from researchers, or that participants find general, one-time consent acceptable. However, these practices may be contrary to participants' preferences, according to their report.
The commentators are ethicists and medical researchers from the University of Washington (UW) and Group Health Research Institute in Seattle. They are: Susan Brown Trinidad and Stephanie M. Fullerton from the UW Department of Bioethics and Humanities, Evette J. Ludman and Eric B. Larson from Group Health Research Institute, Gail Jarvik, division head, UW Medical Genetics, and Wylie Burke, department chair, UW Bioethics and Humanities.
The authors point to recent national events that have increased attention on the use of biological samples in research: The Immortal Life of Henrietta Lacks, a best-selling book on the origins of the HeLa cell line; a lawsuit over the Texas Department of Health Services supplying newborn screening blood samples for research; and the settlement of the Havasupai tribe's lawsuit against the Arizona Board of Regents for unauthorized use of biospecimens. Claims of harm in these and other cases have included breach of privacy, stigmatization, and attacks against cultural beliefs.
Settlements have included financial payments, research restriction
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University of Washington