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Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations

Overview of attention for article published in The Journal of Law, Medicine & Ethics, January 2021
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Title
Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations
Published in
The Journal of Law, Medicine & Ethics, January 2021
DOI 10.1111/j.1748-720x.2008.00266.x
Pubmed ID
Authors

Susan M. Wolf, Frances P. Lawrenz, Charles A. Nelson, Jeffrey P. Kahn, Mildred K. Cho, Ellen Wright Clayton, Joel G. Fletcher, Michael K. Georgieff, Dale Hammerschmidt, Kathy Hudson, Judy Illes, Vivek Kapur, Moira A. Keane, Barbara A. Koenig, Bonnie S. LeRoy, Elizabeth G. McFarland, Jordan Paradise, Lisa S. Parker, Sharon F. Terry, Brian Van Ness, Benjamin S. Wilfond

Abstract

No consensus yet exists on how to handle incidental findings (IFs) in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are findings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed.

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X Demographics

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Mendeley readers

Mendeley readers

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Geographical breakdown

Country Count As %
United States 9 2%
Canada 4 1%
Germany 2 <1%
United Kingdom 2 <1%
Sweden 1 <1%
Australia 1 <1%
Italy 1 <1%
Unknown 342 94%

Demographic breakdown

Readers by professional status Count As %
Researcher 72 20%
Student > Ph. D. Student 53 15%
Student > Master 46 13%
Other 33 9%
Student > Bachelor 30 8%
Other 76 21%
Unknown 52 14%
Readers by discipline Count As %
Medicine and Dentistry 98 27%
Agricultural and Biological Sciences 40 11%
Social Sciences 29 8%
Biochemistry, Genetics and Molecular Biology 25 7%
Psychology 25 7%
Other 73 20%
Unknown 72 20%