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The Ethics of Contacting Family Members of a Subject in a Genetic Research Study to Return Results for an Autosomal Dominant Syndrome.

This case explores the ethical landscape around recontacting a subject's relatives to return genetic research results when the informed consent form signed by the original cohort of subjects is silent on whether investigators may share new information with the research subject's family. As a result...

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Published in:American Journal of Bioethics Vol. 13; no. 10; pp. 61 - 62
Main Authors: Taylor, Holly A., Wilfond, Benjamin S.
Format: case study Journal Article
Published: Taylor & Francis Ltd Oct2013
Online Access:View this record in EBSCOhost
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      dt: Oct2013
      vid: 13
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      pub: Taylor & Francis Ltd
      place: Philadelphia, Pennsylvania
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        atl: The Ethics of Contacting Family Members of a Subject in a Genetic Research Study to Return Results for an Autosomal Dominant Syndrome.
      aug:
        au:
          Taylor, Holly A.
          Wilfond, Benjamin S.
        affil: Johns Hopkins Berman Institute of Bioethics and Johns Hopkins Bloomberg School of Public Health
      sug:
        subj:
          Research Subjects Ethical Issues
          Genetic Research
          Hereditary Diseases Risk Factors
          Consent (Research)
          Research Ethics
          Family
          Duty to Warn
          Mutation
          Critical Illness
      ab: This case explores the ethical landscape around recontacting a subject's relatives to return genetic research results when the informed consent form signed by the original cohort of subjects is silent on whether investigators may share new information with the research subject's family. As a result of rapid advances in genetic technology, methods to identify genetic markers can mature during the life course of a study. In this case, the investigators identified the genetic mutation responsible for the disorder after a number of their original subjects had died. The researchers now have the ability to inform relatives of the subject about their risk of developing the same disease. Mark Rothstein, JD, from the University of Louisville School of Medicine, provides an overview of the medical/scientific, legal, and ethical issues underlying this case. Lauren Milner, PhD, and colleagues at Stanford University explore how the relationship between researcher and subject affect this debate. Seema Shah, JD, and colleagues at the National Institutes of Health and University of California, Los Angeles (UCLA) discuss whether and how requirements of the duty to warn are applicable in this case.
      pubtype: Academic Journal
      doctype:
        case study
        Journal Article
      ougenre: Article
    language: English
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