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J Med Ethics. 2018 Sep;44(9):643-645. doi: 10.1136/medethics-2017-104691. Epub 2018 Jun 14.

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

Author information

1
Division of Genomics and Society, National Human Genome Research Institute, National Institutes of Health, Rockville, Maryland, USA.
2
Division of Cancer Treatment and Diagnosis, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
3
Division of Extramural Activities, National Institute of Dental and Craniofacial Research, National Institutes of Health, Bethesda, Maryland, USA.
4
Division of Neuroscience and Basic Behavioral Science, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland, USA.
5
Division of Neuroscience and Behavior, National Institute on Drug Abuse, National Institutes of Health, Rockville, Maryland, USA.
6
Division of Genomic Medicine, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
7
Department of Bioethics, National Institutes of Health Bioethics Core, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.

Abstract

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.

KEYWORDS:

clinical ethics; donation/procurement of organs/tissues; human tissue; pathology; research ethics

Conflict of interest statement

Competing interests: None declared.

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