4.4 Article

Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?

Journal

AMERICAN JOURNAL OF BIOETHICS
Volume 13, Issue 2, Pages 32-42

Publisher

ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
DOI: 10.1080/15265161.2012.754062

Keywords

genetics (clinical); genetic research; human subjects research; research ethics

Funding

  1. Intramural Research Program of NHGRI, NIH

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The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise to an obligation to look: high benefit to participants, lack of alternative access for participants, and reasonable burden on researchers. Our analysis indicates that there is no obligation to look for incidental findings today, but during the ongoing translation of genomic analysis from research to clinical care, this obligation may arise.

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