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Related Experiment Videos

Informed consent for genetic research.

Aaron Hamvas1, Katherine K Madden, Lawrence M Nogee

  • 1Edward Mallinckrodt Department of Pediatrics, Division of Newborn Medicine, Washington University School of Medicine and St Louis Children's Hospital, St Louis, MO 63110, USA. Hamvas@kids.wustl.edu

Archives of Pediatrics & Adolescent Medicine
|June 9, 2004
PubMed
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Concerns about genetic discrimination, fueled by informed consent language, led families to refuse infant participation in genetic research. Including information on confidentiality protections is recommended to balance risk communication.

Area of Science:

  • Genetics
  • Bioethics
  • Informed Consent

Background:

  • Genetic research advances raise concerns about potential discrimination.
  • Existing regulations aim to protect genetic information but do not eliminate perceived risks.
  • Institutional Review Boards often mandate warnings about discrimination in informed consent documents.

Purpose of the Study:

  • To identify reasons why families declined consent for their infant's participation in a genetic study.
  • To understand the specific factors influencing refusal in genetic research.

Main Methods:

  • A survey was administered to families who refused consent for their infant's participation in a genetic research study.
  • The study involved 135 families who refused consent out of 465 approached.
Keywords:
Biomedical and Behavioral ResearchGenetics and Reproduction

Related Experiment Videos

  • Data were collected between February 2002 and March 2003 at a children's hospital.

    • Main Results:

    • The primary reason for refusal (79%) was institutionally required language in the consent form warning of genetic discrimination risks in insurance and employment.
    • 97% of families cited consent form language as the source of their fears regarding discrimination.
    • Only 20% of families cited lack of time as a reason for refusal.

    Conclusions:

    • Institutionally mandated warnings about genetic discrimination risks were the main driver of consent refusal.
    • Informed consent documents should include information on existing confidentiality protections to counterbalance hypothetical risks.
    • Improved communication regarding safeguards is crucial for participant recruitment in genetic research.