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Related Experiment Videos

Research ethics committees and paternalism.

S J L Edwards1, S Kirchin, R Huxtable

  • 1Centre for Ethics in Medicine, University of Bristol, Bristol, UK. sarah.edward@bristol.ac.uk

Journal of Medical Ethics
|February 12, 2004
PubMed
Summary
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Research ethics committees (RECs) should balance protecting vulnerable individuals with respecting the autonomy of competent participants. RECs must ensure valid consent and avoid undue paternalism in research involving capable adults.

Area of Science:

  • Bioethics
  • Medical Research Ethics

Background:

  • The role of Research Ethics Committees (RECs) in safeguarding participants is critical.
  • High-profile cases like the deaths of Jesse Gelsinger and Ellen Roche highlight the complexities of research ethics.
  • Current practices of RECs are debated regarding their level of intervention in research risks.

Purpose of the Study:

  • To argue against paternalistic practices by RECs when research poses risks to competent individuals.
  • To advocate for RECs to focus on ensuring valid consent and protecting vulnerable populations.
  • To examine the ethical and epistemological basis for REC decision-making.

Main Methods:

  • The study presents a philosophical argument supported by case examples.
  • It analyzes claims regarding individual autonomy, competence assessment, public interest, and exploitation.
Keywords:
Biomedical and Behavioral Research

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  • The authors review the moral and political authority of RECs.

    • Main Results:

    • Competent individuals are best positioned to assess personal risks; RECs should not impose restrictions beyond normal societal constraints.
    • RECs do not determine individual competence, which is the role of researchers and psychiatrists.
    • While RECs may protect against exploitation and aid incompetent individuals, their authority in these areas is not firmly established.

    Conclusions:

    • RECs should refrain from paternalistic rejection of research involving competent individuals capable of assessing their own risks.
    • The primary roles of RECs should be ensuring informed consent and protecting vulnerable populations.
    • A clearer definition and established authority for RECs concerning paternalistic interventions are needed.