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

Home, J ORCID: https://orcid.org/0000-0002-5564-575X 2019, Opening Pandora’s Box : ethical uncertainty surrounding the handling of incidental findings generated in genomic sequencing , in: 14th Annual International Conference for Clinical Ethics Consultation: Clinical Ethics and Changes in Healthcare (ICCEC 2018), 21st-23rd June 2018, Oxford, United Kingdom.

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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.

Item Type: Conference or Workshop Item (Paper)
Schools: Schools > School of Health and Society
Journal or Publication Title: The Journal of Hospital Ethics : Proceedings of the 14th Annual International Conference for Clinical Ethics Consultation: Clinical Ethics and Changes in Healthcare (ICCEC 2018)
Publisher: John J. Lynch, MD Center for Ethics
ISSN: 1938-4955
Related URLs:
Depositing User: Joseph Home
Date Deposited: 28 Feb 2022 16:25
Last Modified: 01 Mar 2022 08:13
URI: https://usir.salford.ac.uk/id/eprint/63273

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