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.
What’s missing from research policy and practice, in many cases, is knowledge and consideration of participants’ viewpoints and values, and participants’ desire to be notified and to give permission for sharing of their data for other studies. Recent research at Group Health Cooperative, a non-profit Seattle health system, has offered insight into study participant views. Group Health patients enrolled in the Adult Changes in Thought (ACT) study, a long running joint UW and Group Health project on brain aging, were asked if their ACT data could be submitted to the database of Genotypes and Phenotypes (dbGaP). Telephone interviews with a sample of those who granted such permission showed that while they were willing to have their information used in this way, this didn’t mean that they had no interest in learning how and by whom the data might be used.
"What was really important to participants in the cases we mention," said Susan Brown Trinidad, research scientist in the UW Department of Bioethics and Humanities, "wasn’t solely driven by the desire for control, or the chance to say no to certain kinds of studies. Rather, participants viewed being asked as an important demonstration of the researchers’ respect and appreciation."
When contact with research volunteers is feasible and practical, then the extra work to re-engage them for re-use of data can be a valuable investment in science.
"Our experience with the ACT study," said Dr. Eric B. Larson, executive director of Group Health Research Institute, "showed informing subjects and seeking additional consent was worthwhile. Every time we share information and involve research subjects, we build on the trusting relationship that ultimately improves our research – and the value our research has for participants, the scientific community, and the public. Through trusting relationships, research can inform patient care, while patient participation keeps informing research."
UW bioethicist, physician, and genetic researcher Wylie Burke has served for many years as a national advisor on the legal, ethical and social implications of genomic research.
"The good news here," she said, "is that participants are interested in research and feel themselves to have an investment in the studies in which they are involved. It’s up to the research establishment – scientists, policy makers and institutional review boards – to respond appropriately."
Source: University of Washington