Ethical Considerations in the Disclosure of Incidental Findings in Research


Ethical Considerations in the Disclosure of Incidental Findings in Research 


On June 16, 2016, Kim Quaid, PhD gave a presentation on incidental findings from genetic testing and the ethics involving what to do with those results and whether the patient should be informed. The video can be accessed with the link above. The presentation is approximately 12 minutes long with approximately 33 minutes of discussion following the presentation.

Additional Resources:

Meacham, M. C., Starks, H., Burke, W., & Edwards, K. (2010). Researcher Perspectives on Disclosure of Incidental Findings in Genetic Research. Journal of Empirical Research on Human Research Ethics?: JERHRE, 5(3), 31–41.

Abdul-Karim, R., Berkman, B. E., Wendler, D., Rid, A., Khan, J., Badgett, T., & Hull, S. C. (2013). Disclosure of Incidental Findings From Next-Generation Sequencing in Pediatric Genomic Research. Pediatrics, 131(3), 564–571.

Gliwa, C., Yurkiewicz, I. R., Lehmann, L. S., Hull, S. C., Jones, N., & Berkman, B. E. (2015). Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants. Genetics in Medicine, 18(7), 705-711.

Kleiderman, E., Avard, D., Besso, A., Ali?Khan, S., Sauvageau, G., & Hébert, J. (2015). Disclosure of incidental findings in cancer genomic research: investigators' perceptions on obligations and barriers. Clinical genetics, 88(4), 320-326.

Leung, L. (2012). Incidental findings in neuroimaging: ethical and medicolegal considerations. Neuroscience journal, 2013.

IU Center for Bioethics | 410 W. 10th St., Suite 3100 | Indianapolis, IN 46202 | Tel: 317-278-4034 | Fax: 317-278-4050