Confidentiality versus duty to inform--an empirical study on attitudes towards the handling of genetic information

Am J Med Genet A. 2007 Jan 15;143A(2):142-8. doi: 10.1002/ajmg.a.31467.


We set out to investigate whether potential relatives want to be informed about the existence of hereditary conditions within their family and under which conditions they want healthcare providers to breach confidentiality to inform them. We hypothesized that the willingness to be informed about a hereditary condition in the family would be influenced by characteristics of the disease and by individual characteristics. Surveys were administered to a Norwegian random sample (N = 2,400) to a Swedish random sample (N = 1,200), and to a Norwegian student sample (n = 607). Eight different disease scenarios were constructed, systematically varying three disease characteristics: fatality, penetrance, and availability of treatment. Results show that a majority of participants wished to be informed about the existence of a hereditary disease within their family. The desire to be informed and the acceptability of breaches of confidentiality were predicted by the treatability of the disease, uncertainty avoidance, and age, but not by self-efficacy or worry.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Attitude to Health*
  • Confidentiality / psychology*
  • Duty to Warn / psychology*
  • Family / psychology*
  • Female
  • Genetic Diseases, Inborn / psychology*
  • Humans
  • Male
  • Middle Aged
  • Norway
  • Surveys and Questionnaires
  • Sweden