"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 t
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University of Washington