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Asian Journal of Ethics in Health and Medicine

2022 Volume 2

Navigating Incidental Findings in Genomic Research: Professional Attitudes and Practices


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  1. Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University, The Kyoto Technoscience Center #3, 14, Yoshidakawara-cho, Sakyo-ku, Kyoto, 606-8305, Japan.
  2. Office for Promoting Medical Research, Showa University, 1-5-8 Hatanodai, Shinagawa-ku, Tokyo, 142-8555, Japan.
  3. Department of Biomedical Ethics, The University of Tokyo Graduate School of Medicine, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-0033, Japan.
Abstract

Clinical genomics professionals frequently encounter decisions regarding the disclosure of incidental findings (IFs) arising from genetic research. While previous studies suggest that research participants are generally interested in receiving IFs, there is ongoing debate about the extent of researchers’ obligations to return such findings. This study aimed to investigate the attitudes and perspectives of clinical genomics professionals toward returning IFs in genomic research. A national survey was conducted among 113 clinical genomics professionals using convenience sampling. A self-administered questionnaire assessed participants’ attitudes toward IF disclosure, perceived responsibilities for returning IFs, and perceived barriers to disclosure. Descriptive statistics were used to summarize the responses. Of the respondents, 65 (57.5%) had encountered IFs in their practice, while 31 (27.4%) expressed discomfort discussing IFs with research participants. Fewer than one-third reported the existence of formal guidelines for managing IFs. A majority indicated willingness to disclose IFs depending on disease risk: 84 participants (80%) for risks ≥50%, and 69 participants (62.7%) for risks between 6–49%. Notably, 36 respondents (31.9%) reported feeling no obligation to return IFs. Clinical genomics professionals generally hold positive attitudes toward the return of IFs, although a subset perceives no duty to do so. The development of detailed, standardized guidelines is essential to support professionals in managing incidental findings responsibly.


How to cite this article
Vancouver
Masamura N, Nishiyama T, Sugimori T. Navigating Incidental Findings in Genomic Research: Professional Attitudes and Practices. Asian J Ethics Health Med. 2022;2:36-43. https://doi.org/10.51847/bIf5NmI7Ju
APA
Masamura, N., Nishiyama, T., & Sugimori, T. (2022). Navigating Incidental Findings in Genomic Research: Professional Attitudes and Practices. Asian Journal of Ethics in Health and Medicine, 2, 36-43. https://doi.org/10.51847/bIf5NmI7Ju

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