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Building a Biomedical Information Commons: Ethical and Policy Issues
April 19 @ 12:30 pm - 2:00 pm
Clinical investigators, public health advocates, and IRBs have struggled to develop appropriate policies on how to return results to patients involved in research studies. These results may come in a variety of forms, ranging from aggregated study results to individual results to incidental findings. Experts disagree over the optimal timing, how researchers should consider the burden that these results can place on patients, and whether there are circumstances in which certain findings should be withheld.
Is clinical utility the appropriate standard or does mere curiosity suffice to trigger disclosure obligations? How certain must the results be? What if there is reason to believe that the results will be difficult for participants to understand – or cause them harm?
Two experts in the field of research law and ethics will join us to engage these and other questions, and help conceive a way to move forward in the best interests of patients and the medical research enterprise.