The need for anonymous genetic counseling and testing

Am J Hum Genet. 1996 Feb;58(2):393-7.


Concerns are mounting about the risks of genetic discrimination resulting from the release of predictive and presymptomatic genetic test results to employers, insurers, and others. The ability to keep this information confidential is questionable, particularly in view of the expansion of electronic medical databases. One solution is to afford individuals access to anonymous genetic counseling and testing. Probands would be identified only by a code that would not reveal personal information, and test results would be stored, retrieved, and released solely on the basis of this code. The experience with anonymous HIV testing, while not completely analogous, suggests that such an approach would be both practical and effective.

MeSH terms

  • Anonymous Testing*
  • Confidentiality* / legislation & jurisprudence
  • Ethics, Medical
  • Genetic Counseling* / legislation & jurisprudence
  • Genetic Diseases, Inborn / diagnosis
  • Genetic Privacy*
  • Genetic Testing* / legislation & jurisprudence
  • HIV Infections / diagnosis
  • Humans
  • Minors