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Huntington's Disease Youth Organization

How does getting an HD test affect jobs and insurance?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. If I test for HD and am positive. What impact does this have on jobs/ careers/ morgages/ insurance etc?

Izzy, 18, UK

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A. Hi Izzy,

Thanks for your email. You’re asking some really key questions in relation to predictive testing. In terms of insurance, there is currently a government insurance moratorium in the UK (in place until 2017) whereby individuals do not have to declare a predictive test result for policies up to £500,000. It is hoped that the moratorium will be extended at each review, but there is no guarantee. This is important when thinking of having a test at a young age, as it is likely to be some time before someone would be in the position of taking out a life assurance/mortgage. You might find the link to this leaflet useful:

http://www.geneticalliance.org.uk/docs/genetics-and-insurance.pdf

In terms of job prospects, there is no requirement to disclose a predictive test result to future employers (or anyone else for that matter). This is something that is discussed in the pre-test sessions in terms of possibilities of discrimination if disclosing a result to a future employer. An individual who has tested gene positive and who remains well (i.e. following a predictive test) should have the same options open to him or her as someone at risk. It is, however, important to consider the potential emotional impact of testing gene positive and whether it would influence how you thought about the future and available options. The information a predictive test provides may or may not prove useful to an individual and timing in relation to having a test is another key issue. If you wanted to talk about predictive testing further or any other aspects of HD, you could ask your GP to refer you to your nearest genetics clinic based at the Liverpool Women’s hospital. If you have any problem in being referred, please do get back in touch.

All the best

Rhona Macleod