Ethical issues in genetic research: disclosure and informed consent

Nat Genet. 1997 Jan;15(1):16-20. doi: 10.1038/ng0197-16.


As research to correlate genetic status with predisposition to disease has accelerated, so has the concern that participation in such studies creates the risk of genetic discrimination and emotional distress. There is a need to broaden disclosure during the consent process to ensure that potential subjects understand these risks and other issues and to address them in the consent form. We describe the broad approach that we have taken in regard to disclosure and consent in gene mapping studies.

MeSH terms

  • Adult
  • Child
  • Chromosome Mapping
  • Consent Forms
  • Databases, Nucleic Acid
  • Disclosure*
  • Ethics Committees, Research
  • Ethics, Medical*
  • Federal Government
  • Genetic Privacy*
  • Genetic Research*
  • Genetics, Medical* / legislation & jurisprudence
  • Government Regulation
  • Guidelines as Topic
  • Humans
  • Incidental Findings
  • Informed Consent*
  • Prejudice
  • Research Subjects*
  • Research* / legislation & jurisprudence
  • Truth Disclosure*
  • United States