Ellen Wright Clayton, MD, JD Craig-Weaver Professor of Pediatrics Director, Center for Biomedical Ethics and Society Vanderbilt University. Hot Topics in Genomics Research. Topics for today. Data Sharing Identifiability Return of research results. Data sharing. Why is this an issue?
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Ellen Wright Clayton, MD, JD
Craig-Weaver Professor of Pediatrics
Director, Center for Biomedical Ethics and Society
Hot Topics in Genomics Research
What are we talking about returning?
Relative importance of study benefits
“In deciding whether or not to participate,
how important would the following be to you?”
Health care benefits
Gas card or gift card
“I would want to know my
individual research results about:”
Strongly Disagree Disagree Agree Strongly Agree
“conditions that can be prevented or treated.”
“health risks, even if there is nothing I could do about them.”