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Does the current consent process minimize the risks of genetics research?

Dave Wendler1, Kiran Prasad, Benjamin Wilfond

  • 1Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, MD 20892-1156, USA. wendler@nih.gov

American Journal of Medical Genetics
|November 20, 2002
PubMed
Summary

Informed consent for genetics research may not adequately protect participants. Many individuals forget key risks, like future data use and insurance implications, after the study concludes, highlighting a need for improved consent processes.

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Area of Science:

  • Genetics Research Ethics
  • Informed Consent Procedures
  • Participant Risk Mitigation

Background:

  • The completion of the Human Genome Project is increasing participation in genetics research.
  • Current informed consent processes, established before widespread genetics research, may be insufficient for modern studies.
  • Genetics research risks can extend beyond the study period, influenced by post-participation disclosures.

Purpose of the Study:

  • To evaluate if the current informed consent process adequately prepares genetics research participants for long-term risks.
  • To assess participant recall of key genetics research risks, particularly those related to future disclosures and their consequences.

Main Methods:

  • Interviewed 130 individuals with prior participation in genetics research.

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  • Assessed participant recall of specific research aspects, including genetic testing, future sample use, and potential impacts on insurance status.

    • Main Results:

    • Only 19% of participants recalled that their samples would undergo genetic testing.
    • A minority recalled that samples might be used for future research (16%) or that record release could affect insurance (15%).
    • These findings indicate a potential gap in participant understanding of long-term genetics research risks.

    Conclusions:

    • Current informed consent practices may not sufficiently minimize the risks associated with genetics research participation.
    • Supplemental mechanisms are needed to help participants remember critical aspects of their research involvement.
    • Institutional Review Boards and investigators should consider implementing strategies to enhance long-term risk awareness for research participants.