Editorials

Genetic discrimination in Huntington’s disease

BMJ 2009; 338 doi: http://dx.doi.org/10.1136/bmj.b1281 (Published 10 June 2009) Cite this as: BMJ 2009;338:b1281
  1. Aad Tibben, professor of psychology of clinical genetics
  1. 1Leiden University Medical Centre, PO Box 9600, Leiden, 2300 RC, Netherlands
  1. a.tibben{at}lumc.nl

    Is more often related to family history than genetic testing

    Predictive testing for Huntington’s disease was introduced in the late 1980s. It was offered reluctantly, however, because of the lack of treatment available for identified gene carriers and the potential for genetic discrimination—that is, the unfair and inappropriate treatment of a person or group on the basis of genetic information. In the linked cross sectional survey (doi:10.1136/bmj.b2175), Bombard and colleagues assess the nature and prevalence of genetic discrimination in a cohort of asymptomatic genetically tested and untested people at risk for Huntington’s disease.1

    Genetic testing gives people at risk the opportunity to take more responsibility and control over their lives, their health, and their future. Aren’t these major aims in health care? In general, the test brings relief from uncertainty and more control over people’s future lives,2 and no serious adverse consequences have been reported.3

    International guidelines on genetic testing for Huntington’s disease have been used as a template for testing programmes …

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