Erik Parens, Paul Appelbaum, and Wendy Chung, “Incidental Findings in the Era of Whole Genome Sequencing?”
Incidental Findings in the Era of Whole Genome Sequencing?
Article first published online: 10 JUL 2013
© 2013 by The Hastings Center
Hastings Center Report
Volume 43, Issue 4, pages 16–19, July-August 2013
How to Cite
Parens, E., Appelbaum, P. and Chung, W. (2013), Incidental Findings in the Era of Whole Genome Sequencing?. Hastings Center Report, 43: 16–19. doi: 10.1002/hast.189
- Issue published online: 10 JUL 2013
- Article first published online: 10 JUL 2013
- NHGRI. Grant Numbers: R21 HG006596, R01 HG006600, P20 HG005535
The rise of technologies that can inexpensively sequence entire genomes means that researchers and clinicians have access to ever vaster stores of genomic data, some of which could be of great use to research participants or patients, and most of which, at least for today, will be of little, uncertain, or no use. Those facts are essential features of a new ethical territory we are now entering with genetics research. As we explore that territory, we should try to be as clear as possible about the issues at hand.
Clarity about the ethical issues that delineate this new territory requires that we be wary about too hastily importing into it concepts from the old territory. We want to suggest a way in which the term “incidental findings” can impede our ability to see clearly some of the most important issues we face. To show how that term can sometimes obscure more than it illuminates, we focus on how it is being deployed in the context of research. Although it may have been useful, when considering older forms of genetic research, to speak about researchers stumbling across clinically significant findings, and although that way of speaking has certainly not yet become wholly obsolete, it is ever less appropriate as the technology becomes ever more powerful.