Opening Pandora’s Box : ethical uncertainty surrounding the handling of incidental findings generated in genomic sequencing

Home, J

Abstract

As whole-genome and whole-exome sequencing techniques become more accessible, their application within both medical research and clinical practice has significantly increased. This has
led to substantial gains in our knowledge surrounding the genetic components of disease,
pathogenesis, and prognosis. This, in turn, has allowed us to develop targeted treatments, with the
ultimate goal of improving patients’ outcomes.
However, as with everything within the field
of medicine, each intervention comes with some
risk. In the case of genomics, this is in the form of
so-called incidental findings. Incidental findings
are not a new concept in medicine; however, due
to the nature of genomic information, this one investigative test has the potential to reveal huge
quantities of unwarranted information about patients, their future health risks, as well as possible
risks to genetic relatives. In addition to health-related findings, sequencing may also lead to significant revelations around biological parenthood
of both patients and their offspring.
This leads to difficult questions for clinicians:
Do we inform patients, or not? This is further complicated when a patient does not consent to receive additional results, but the clinician finds an
easily treatable but otherwise life-limiting finding. Such cases call to question the validity of traditional approaches to beneficence, autonomy, and
consent, with some ethicists suggesting the principle of solidarity supersedes all other ethical considerations. Such a position has created heated
debate with those who champion individual sovereignty above paternalism.
Not only is there little consensus within academic bioethics on the subject, there is little regulatory guidance to help direct doctors in such situations. The complexity of these findings leads to
significant uncertainty for both clinicians and researchers, in an area which is only going to grow
in the future.

Citation

Home, J. (2019). Opening Pandora’s Box : ethical uncertainty surrounding the handling of incidental findings generated in genomic sequencing. ˜The œjournal of hospital ethics, 6(1), 41

• Journal Article Type: Conference Paper
• Conference Name: 14th Annual International Conference for Clinical Ethics Consultation: Clinical Ethics and Changes in Healthcare (ICCEC 2018)
• Conference Location: Oxford, United Kingdom
• End Date: Jun 23, 2018
• Publication Date: Jan 1, 2019
• Deposit Date: Feb 28, 2022
• Journal: The Journal of Hospital Ethics : Proceedings of the 14th Annual International Conference for Clinical Ethics Consultation: Clinical Ethics and Changes in Healthcare (ICCEC 2018)
• Print ISSN: 1938-4955
• Electronic ISSN: 1938-4920
• Volume: 6
• Issue: 1
• Pages: 41
• Publisher URL: https://ct1.medstarhealth.org/content/uploads/sites/6/2014/08/JOHE_V6N1.pdf
• Related Public URLs: https://www.medstarhealth.org/locations/medstar-washington-hospital-center/the-john-j-lynch-md-center-for-ethics/the-journal-of-hospital-ethics
• Additional Information: Access Information : This is a published conference abstract.; Event Type : Conference