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)
AbstractIncidental 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.
Added to PP
Historical graph of downloads
Similar books and articles
The Fiduciary Relationship Model for Managing Clinical Genomic “Incidental” Findings.Gabriel Lázaro-Muñoz - 2014 - Journal of Law, Medicine and Ethics 42 (4):576-589.
Critical Social Theory Approach to Disclosure of Genomic Incidental Findings.J. L. Bevan, J. N. Senn-Reeves, B. R. Inventor, S. M. Greiner, K. M. Mayer, M. T. Rivard & R. J. Hamilton - 2012 - Nursing Ethics 19 (6):819-828.
Medical Error Disclosure Training: Evidence for Values-Based Ethical Environments. [REVIEW]Cheryl Rathert & Win Phillips - 2010 - Journal of Business Ethics 97 (3):491 - 503.
When Research Seems Like Clinical Care: A Qualitative Study of the Communication of Individual Cancer Genetic Research Results.Fiona A. Miller, Mita Giacomini, Catherine Ahern, Jason S. Robert & Sonya de Laat - 2008 - BMC Medical Ethics 9 (1):4.
Stakeholder Opinions and Ethical Perspectives Support Complete Disclosure of Incidental Findings in MRI Research.John P. Phillips, Caitlin Cole, John P. Gluck, Jody M. Shoemaker, Linda E. Petree, Deborah L. Helitzer, Ronald M. Schrader & Mark T. Holdsworth - 2015 - Ethics and Behavior 25 (4):332-350.
Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (2):32-42.
The Right to Know and the Right Not to Tell: The Ethics of Disclosure of HIV Status.Mary O'Grady - 2011 - Postmodern Openings 2 (6):77-167.
A Review of Ethical Frameworks for the Disclosure of Individual Research Results in Population-Based Genetic and Genomic Research. [REVIEW]Isabelle Budin-Ljøsne - 2012 - Research Ethics 8 (1):25-42.
Understanding Risk: Psychosis and Genomics Research in Singapore.Ayesha Ahmad, Tamara Lysaght, Liu Jianjun, Mythily Subramaniam, Tan Say Beng & Benjamin Capps - 2012 - Genomics, Society and Policy 8 (2).
Scanning the Body, Sequencing the Genome: Dealing with Unsolicited Findings.Roel H. P. Wouters, Candice Cornelis, Ainsley J. Newson, Eline M. Bunnik & Annelien L. Bredenoord - 2017 - Bioethics 31 (9):648-656.
Disclosure of Insurability Risks in Research and Clinical Consent Forms.Shahad Salman, Ida Ngueng Feze & Yann Joly - 2016 - Global Bioethics 27 (1):38-49.
Individual Genetic and Genomic Research Results and the Tradition of Informed Consent: Exploring US Review Board Guidance.Christian Simon, Laura A. Shinkunas, Debra Brandt & Janet K. Williams - 2012 - Journal of Medical Ethics 38 (7):417-422.
Mandatory Disclosure and Medical Paternalism.Emma Bullock - 2016 - Ethical Theory and Moral Practice 19 (2):409-424.
Nursing Students’ Ethical Challenges in the Clinical Settings: A Mixed-Methods Study.Roghayeh Mehdipour Rabori, Mahlagha Dehghan & Monirosadat Nematollahi - 2019 - Nursing Ethics 26 (7-8):1983-1991.
The Compliance of Iraqi Pharamacists with Ethical Priciples in Applying the Pharaceutical Care for Diabetic Patients.Ehab Mudher Mikhael & Haydar F. Al-Tukmagi - 2016 - Clinical Ethics 11 (4):159-165.
References found in this work
Shared Decision Making, Paternalism and Patient Choice.Lars Sandman & Christian Munthe - 2010 - Health Care Analysis 18 (1):60-84.
The Right Not to Know: An Autonomy Based Approach.R. Andorno - 2004 - Journal of Medical Ethics 30 (5):435-439.
Ignorance, Information and Autonomy.John Harris & Kirsty Keywood - 2001 - Theoretical Medicine and Bioethics 22 (5):415-436.
Citations of this work
No citations found.