Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study

BMC Medical Ethics 21 (1):1-12 (2020)
  Copy   BIBTEX

Abstract

Incidental findings and secondary findings, being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Arguments for reporting these results or not doing so typically relate to the principles of autonomy, non-maleficence and beneficence. However, these principles frequently conflict and are insufficient by themselves to come to a conclusion. This study investigates empirically how ethical principles are considered when actually reporting IFs or SFs and how value conflicts are weighed. A qualitative focus group study has been undertaken, including a multidisciplinary group of professionals from Belgian centres for medical genetics. The data were analysed thematically. All eight Belgian centres participated in this study. Ethical values were frequently referred to for disclosure policies on IFs and SFs. Participants invoked respect for patient autonomy to support the disclosure of IFs and opt-out options for IFs and SFs, non-maleficence for the professional delineation of reportable IFs and opt-out options for IFs and SFs and beneficence for the mandatory reporting of actionable IFs, the delineation of reportable IFs and a current decline of actively pursued SFs. Professional assumptions about patients’ genetic literacy were an important factor in the weighing of values. In line with the traditional bioethical discourse, the mandatory reporting of actionable IFs might be interpreted as a “technological, soft paternalism”. Restricting patients’ choices might be acceptable, but then its motives should be valid and its beneficent outcomes highly plausible. Hence, the presuppositions of technological, soft paternalism - patients’ inability to make informed decisions, normative rationality, the efficacy of beneficent outcomes and the delineated spectrum of beneficence - should be approached critically. Moreover, distributive justice should be considered an important value in the delineation of the current scope of the ethical debate on IFs and SFs. This study of guiding values may stimulate the debate on the ethical grounds for a solid policy on IFs and SFs internationally.

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 89,528

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Mandatory Disclosure and Medical Paternalism.Emma C. Bullock - 2016 - Ethical Theory and Moral Practice 19 (2):409-424.

Analytics

Added to PP
2020-01-31

Downloads
16 (#765,280)

6 months
3 (#431,291)

Historical graph of downloads
How can I increase my downloads?

Author's Profile

Heidi Mertes
University of Ghent

Citations of this work

No citations found.

Add more citations

References found in this work

Principles of biomedical ethics.Tom L. Beauchamp - 1979 - New York: Oxford University Press. Edited by James F. Childress.
Paternalism.Gerald Dworkin - 1972 - The Monist 56 (1):64-84.
The right not to know: an autonomy based approach.R. Andorno - 2004 - Journal of Medical Ethics 30 (5):435-439.

View all 16 references / Add more references