Jove
Visualize
Contact Us
JoVE
x logofacebook logolinkedin logoyoutube logo
ABOUT JoVE
OverviewLeadershipBlogJoVE Help Center
AUTHORS
Publishing ProcessEditorial BoardScope & PoliciesPeer ReviewFAQSubmit
LIBRARIANS
TestimonialsSubscriptionsAccessResourcesLibrary Advisory BoardFAQ
RESEARCH
JoVE JournalMethods CollectionsJoVE Encyclopedia of ExperimentsArchive
EDUCATION
JoVE CoreJoVE BusinessJoVE Science EducationJoVE Lab ManualFaculty Resource CenterFaculty Site
Terms & Conditions of Use
Privacy Policy
Policies

Related Experiment Videos

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
This summary is machine-generated.

Related Concept Videos

You might also read

Related Articles

Articles linked to this work by shared authors, journal, and citation graph.

Sort by
Same author

Characterizing parent language about home respiratory technology for children.

Journal of child health care : for professionals working with children in the hospital and community·2026
Same author

Parental Communication With their Children about Cancer Risk and DTC Cascade Genetic Testing: Implications for Genetic Education and Counseling.

American journal of medical genetics. Part A·2025
Same author

Ethical considerations for sharing aggregate results from pragmatic clinical trials.

Clinical trials (London, England)·2024
Same author

Parent attitudes towards predictive testing for autism in the first year of life.

Journal of neurodevelopmental disorders·2024
Same author

Perspectives of pediatric oncologists on referral for CAR-T therapy: a mixed methods pilot study.

JNCI cancer spectrum·2024
Same author

Recent advances and future perspectives in the therapeutics of prostate cancer.

Experimental hematology & oncology·2023

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.

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.

Related Experiment Videos

  • 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.