Research, informed consent, and the limits of disclosure

Bioethics. 2001 Aug;15(4):341-63. doi: 10.1111/1467-8519.00243.

Abstract

According to this paper, respect for informed consent implies that subjects should often be told a good deal more than ethical guidelines explicitly or implicitly require. Unless subjects are informed of the researchers' personal characteristics, views, and sponsors whenever they would be likely to consider them significant, their autonomy is being overridden. However, overriding subjects' autonomy is sometimes required by the interests of researchers in not being discriminated against or suffering intrusions into their privacy. This paper resolves the conflict between informed consent and the interests of researchers by recommending that (i) subjects generally should be told of the personal characteristics of researchers when relevant as part of the researchers' job and (ii) that subjects should be told of researchers' views when conceptually connected to the research and (iii) that subjects should almost always be told about sponsorship. While the paper explicitly limits the role of informed consent, these recommendations go significantly beyond most guidelines in their requirements about what information should be disclosed.

MeSH terms

  • Disclosure / standards*
  • Human Experimentation*
  • Humans
  • Informed Consent*
  • Personal Autonomy
  • Prejudice
  • Privacy
  • Research Personnel
  • Research Subjects