Development of a consensus approach for return of pathology incidental findings in the Genotype-Tissue Expression (GTEx) project

The active debate about the return of incidental or secondary findings in research has primarily focused on return to research participants, or in some cases, family members. Particular attention has been paid to return of genomic findings. Yet, research may generate other types of findings that war...

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Published inJournal of medical ethics Vol. 44; no. 9; pp. 643 - 645
Main Authors Lockhart, Nicole C, Weil, Carol J, Carithers, Latarsha J, Koester, Susan E, Little, A Roger, Volpi, Simona, Moore, Helen M, Berkman, Benjamin E
Format Journal Article
LanguageEnglish
Published England BMJ 01.09.2018
BMJ Publishing Group LTD
Subjects
Bioethics
Blood & organ donations
Brief report
Cancer therapies
Confidentiality
Confidentiality - ethics
Disclosure - ethics
Ethics
Family medical history
Feedback
Gene expression
Genomes
Genomics
Genomics - ethics
Humans
Incidental Findings
Pathology
Pathology - ethics
Research ethics
Transplant Recipients
Transplants & implants
donation/procurement of organs/tissues
pathology
human tissue
research ethics
clinical ethics
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Summary:The active debate about the return of incidental or secondary findings in research has primarily focused on return to research participants, or in some cases, family members. Particular attention has been paid to return of genomic findings. Yet, research may generate other types of findings that warrant consideration for return, including findings related to the pathology of donated biospecimens. In the case of deceased biospecimen donors who are also organ and/or tissue transplant donors, pathology incidental findings may be relevant not to family members, but to potential organ or tissue transplant recipients. This paper will describe the ethical implications of pathology incidental findings in the Genotype-Tissue Expression (GTEx) project, the process for developing a consensus approach as to if/when such findings should be returned, possible implications for other research projects collecting postmortem tissues and how the scenario encountered in GTEx fits into the larger return of results/incidental findings debate.
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BB conducted the bioethics consult described in this manuscript. NL, CW, LC, SK, ARL, SV, and HM all participated in the development of the approach to pathology incidental findings described herein. The initial draft of the manuscript was produced by NL, CW and BB with significant contributions from all authors.
Contributors
ISSN:0306-6800
1473-4257
1473-4257
DOI:10.1136/medethics-2017-104691