Research Ethics Forum: Ethical Issues in Managing Incidental and Secondary Findings
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Research Ethics Forum: Ethical Issues in Managing Incidental and Secondary Findings

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In addition to turning up primary findings (the medical information that is being sought through metabolic and genetic testing, imaging studies, and other forms of examination), physicians and ...

In addition to turning up primary findings (the medical information that is being sought through metabolic and genetic testing, imaging studies, and other forms of examination), physicians and researchers may also generate incidental or secondary findings about their patients and research subjects that are of significance for their health or reproductive choices.

There is one increasingly important area where incidental findings are difficult to predict: research using material from “repositories” of clinical samples and data where the outcomes of experimental procedures may not be anticipated and the purpose of the research cannot be known at the time a person gives permission for his or her material to be included in the repository.

This session will address the question: How do USC clinicians and researchers handle incidental and secondary findings now and how will they handle them as research repositories are established at the Keck Hospital and LAC+USC Medical Center?

Learn more about SC CTSI: http://sc-ctsi.org/

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Research Ethics Forum: Ethical Issues in Managing Incidental and Secondary Findings Document Transcript

  • 1. Research Ethics Forum IS KECK READY TO BE A 21ST CENTURY ACADEMIC MEDICAL CENTER? Presented by the Education, Career Development, and Ethics Program (ECDE) at the Southern California Clinical and Translational Science Institute (SC CTSI) Panelists What is the issue? The future of research medicine lies with using “big data” to understand the social and biological causes—and effective treatment—of diseases. This Research Ethics Forum will focus on the databanks already in use at USC as well as Keck’s plans for storing and then using data and specimens to advance biomedical knowledge. The following ethical issues posed by data warehouses will be up for discussion: • Should all data and samples in the data warehouse be anonymized? Doing so would relieve much of the burden of getting consent from patients to include their data, leading to a more complete and scientifically useful database. Stephen B. Gruber, MD, PhD, MPH Director, USC Norris Comprehensive Cancer Center Professor of Medicine, KSOM Joshua Lee, MD Chief Information Officer, Keck Medicine of USC Senior Vice President for USC Health • On the other hand, anonymization makes it impossible to contact a patient, should a study using stored specimens and data turn up any “incidental finding” that could be important for the patient’s future well-being. • Is that bad, or would it be inadvisable to convey a research finding that the patient wasn’t seeking and that couldn’t have been predicted when the patient consented to participate in the data warehouse? RSVP: http://j.mp/1fZGdHg DATE: Friday, February 21, 2014 12:00 PM - 1:00 PM Moderator Alexander M. Capron Director of Ethics, ECDE, SC CTSI Professor of Law and Medicine, KSOM LOCATION: Norris Research Tower, LG 503/4 1450 Biggy St, Los Angeles, CA Contact: ecde@sc-ctsi.org