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

Marlies Saelaert (UGent) , Heidi Mertes (UGent) , Tania Moerenhout (UGent) , Elfride De Baere (UGent) and Ignaas Devisch (UGent)
Author
Organization
Abstract
Background: Incidental findings (IFs) and secondary findings (SFs), 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, nonmaleficence 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. Methods: 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. Results: 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 optout options for IFs and SFs, non-maleficence for the professional delineation of reportable IFs and opt-out options for IFs and SFs and (the particular scope of) 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. Conclusions: 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.
Keywords
Patient autonomy, Professional beneficence, Soft paternalism, Distributive justice, Clinical genomic testing, Incidental findings, Secondary findings, Qualitative research

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MLA
Saelaert, Marlies, et al. “Ethical Values Supporting the Disclosure of Incidental and Secondary Findings in Clinical Genomic Testing : A Qualitative Study.” BMC MEDICAL ETHICS, vol. 21, 2020.
APA
Saelaert, M., Mertes, H., Moerenhout, T., De Baere, E., & Devisch, I. (2020). Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing : a qualitative study. BMC MEDICAL ETHICS, 21.
Chicago author-date
Saelaert, Marlies, Heidi Mertes, Tania Moerenhout, Elfride De Baere, and Ignaas Devisch. 2020. “Ethical Values Supporting the Disclosure of Incidental and Secondary Findings in Clinical Genomic Testing : A Qualitative Study.” BMC MEDICAL ETHICS 21.
Chicago author-date (all authors)
Saelaert, Marlies, Heidi Mertes, Tania Moerenhout, Elfride De Baere, and Ignaas Devisch. 2020. “Ethical Values Supporting the Disclosure of Incidental and Secondary Findings in Clinical Genomic Testing : A Qualitative Study.” BMC MEDICAL ETHICS 21.
Vancouver
1.
Saelaert M, Mertes H, Moerenhout T, De Baere E, Devisch I. Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing : a qualitative study. BMC MEDICAL ETHICS. 2020;21.
IEEE
[1]
M. Saelaert, H. Mertes, T. Moerenhout, E. De Baere, and I. Devisch, “Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing : a qualitative study,” BMC MEDICAL ETHICS, vol. 21, 2020.
@article{8645476,
  abstract     = {Background: Incidental findings (IFs) and secondary findings (SFs), 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, nonmaleficence 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. 
Methods: 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. 
Results: 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 optout options for IFs and SFs, non-maleficence for the professional delineation of reportable IFs and opt-out options for IFs and SFs and (the particular scope of) 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. 
Conclusions: 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.},
  articleno    = {9},
  author       = {Saelaert, Marlies and Mertes, Heidi and Moerenhout, Tania and De Baere, Elfride and Devisch, Ignaas},
  issn         = {1472-6939},
  journal      = {BMC MEDICAL ETHICS},
  keywords     = {Patient autonomy,Professional beneficence,Soft paternalism,Distributive justice,Clinical genomic testing,Incidental findings,Secondary findings,Qualitative research},
  language     = {eng},
  pages        = {12},
  title        = {Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing : a qualitative study},
  url          = {http://dx.doi.org/10.1186/s12910-020-0452-0},
  volume       = {21},
  year         = {2020},
}

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