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Automatic placement of genomic research results in medical records: do researchers have a duty? Should participants have a choice?

Authors :
Prince, Anya E.R.
Conley, John M.
Davis, Arlene M.
Lazaro-Munoz, Gabriel
Cadigan, R. Jean
Source :
Journal of Law, Medicine & Ethics. Winter 2015, Vol. 43 Issue 4, p827, 17 p.
Publication Year :
2015

Abstract

I. Intro The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to [...]<br />In genomics research, it is becoming common practice to return individualized primary and incidental findings to participants and several ongoing major studies have begun to automatically transfer these results to a participant's clinical medical record. This paper explores who should decide whether to place genomic research findings into a clinical medical record. Should participants make this decision, or does a researcher's duty to place this information in a medical record override the participant's autonomy? We argue that there are no clear ethical, legal, professional, or regulatory duties that mandate placement without the consent of the participant. We conclude that informing participants of results, together with a clear explanation, relevant recommendations and referral sources, and the option to consent to placement in the medical records will best discharge researchers' ethical and legal duties towards participants.

Details

Language :
English
ISSN :
10731105
Volume :
43
Issue :
4
Database :
Gale General OneFile
Journal :
Journal of Law, Medicine & Ethics
Publication Type :
Periodical
Accession number :
edsgcl.441585099