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Lessons from predictive testing for Huntington disease: 25 years on
  1. Alice K Hawkins1,2,
  2. Anita Ho2,
  3. Michael R Hayden1
  1. 1Centre for Molecular Medicine and Therapeutics, University of British Columbia, Vancouver, BC, Canada
  2. 2W. Maurice Young Centre for Applied Ethics, University of British Columbia, Vancouver, BC, Canada
  1. Correspondence to Alice Hawkins, Centre for Molecular Medicine and Therapeutics, 950 West 28th Ave, University of British Columbia, Child and Family Research Institute, Vancouver V5Z 4H4, BC, Canada; alicehaw{at}exchange.ubc.ca

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The availability of predictive genetic tests has rapidly expanded in the last two decades. We can now provide testing for a range of adult onset conditions including certain cancers, cardiac diseases, and neurological disorders. These developments have recognised benefit including determining the necessity of additional screening or preventive options, relieving uncertainty, and reproductive planning. However, despite these benefits, predictive tests raise challenges regarding the ethical delivery of genetic testing, results, and services. To respond to these challenges, predictive testing protocols, such as those for Huntington disease (HD), have required several in-person appointments, spread over several weeks or months, in order to undergo counselling, testing, and receive test results.1 Originally, these multi-step, multi-visit protocols were developed to both protect individuals from the potential for serious psychological damage from receiving increased risk results, as well as to ensure that individuals undergoing testing made a fully considered decision. In addition, incorporating …

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