New evidence for genetic discrimination
New evidence for genetic discrimination
Discrimination in any form has always been a morally touchy subject: race, disability, sexual preference, gender, Volvo drivers…the list is long.
The 21st century addition to this list will likely be genetic discrimination. A paper in the recent British Medical Journal has found people with a family history of genetic diseases are often discriminated against by insurance companies and their relatives and friends.
This is not new as similar Australian research (see ref below) last year found much the same thing. What is different about the BMJ paper is that their findings suggest that it is the family history of the genetic disease that is the main cause of genetic discrimination, not the participation in genetic testing. That is, family members that aren’t showing symptoms of any familial diseases, have yet to have any test, but are at risk, are still likely to face discrimination.
The authors of the paper surveyed 233 individuals in Canada who were at risk of developing Huntington’s disease. None of them had any symptoms. About 40% said they experienced discrimination. The survey was sent to each participant, who answered the question based on their perception. This might be one limitation to the survey, in that perception might deviate from reality, but it still highlights an issue that needs serious consideration as our knowledge about genetics increases and the testing technology is leaping ahead at a rate beyond the speed of any Volvo.
At this stage I have only found good evidence that such genetic discrimination applies to situations where there is a reliable genetic test for a particular disorder, such as Huntingtons’ disease.
But there are loads of private companies out there claiming to be able to screen for everything from IQ, susceptibility to heart disease, even ability to taste bitterness. For a differing but generally pricey number of $$ you can find all this out. None of the results are definitive, especially the slippery character of intelligence. See GNTIS blog on this Such companies include 23andMe and deCODE Genetics – a web search will turn up heaps more.
When we do start getting more definitive tests for some of these characteristics, insurance companies sporting teams, or employers will have a more evidence-based justification for their decision making.
British Medical Journal study
Bombard, Y, Hayden, M, British Medical Journal, 338, 9 June 2009
Australian study
Taylor S, Treloar S, Barlow-Stewart K, Stranger M, Otlowski M.. Clinical Genetics, 2008: 74, 20-30, Investigating genetic discrimination in Australia: a large-scale survey of clinical
Jason Major
Manager, GNTIS