DAA - Disability Awareness in Action

UK: “No ethical issues around preconception testing and screening” – Human Genetics Commission

Posted 11/4-11 at 17.42

The Human Genetics Commission (HGC) is UK Government's advisory body on new developments in human genetics and how they impact on individual lives. Their recent report, Increasing options, informing choice: A report on preconception genetic testing and screening, concludes that ‘...thereare no specific social, ethical or legal principles that would make preconception genetic testing within the framework of a population screening programme unacceptable.'

At the moment, people who think they may be at risk of passing on a genetic condition can ask for a preconception genetic test, although provision is patchy across the country. Screening (testing for an entire population or group) is also offered to those particularly prone to certain conditions, such as Tay-Sachs disease in Ashkenazi Jews. However, the HGC feels broader-coverage genetic screening programmes would provide fairer access to reproductive information.

Among other things, the HGC recommends that:

• preconception genetic testing should be made available to all those who may benefit from it;
• if antenatal carrier screening is offered for a genetic condition then, where technically feasible, preconception screening should also be offered;
• if screening for older school children and young people is introduced then it will be important to ensure that individuals are not pressured or induced to take tests;
• development of preconception genetic screening programmes should not detract from the provision of treatment and support for affected individuals.

Commenting on the report, Dr David King, director of Human Genetics Alert, says, "This immensely dangerous report advocates the quickest route to a eugenics which has little difference from that seen in the early 20th century: a general trawl through the whole population to weed out all 'bad genes'. It will inevitably lead to young people being stigmatised and becoming unmarriageable, and disabled people will feel even more threatened."

http://www.hgc.gov.uk/Client/news_item.asp?Newsid=156

http://www.google.com/hostednews/ukpress/article/ALeqM5jRPgcbjqotgHPNnqk5Jj47D_4YoQ?docId=N0428891302079625260A

Editorial comment: The HGC report attempts to balance an extension of population screening for ‘unacceptable' genetic conditions, with calls for supporting people who are born with those conditions, as well as there being no pressure put on prospective parents to be tested. This may seem reasonable on paper, but the reality is that screening for any genetic or chromosomal condition, whatever the caveats, sends an unambiguously negative message about the social value of people with that condition. After all, there is no screening, at least not yet, for ‘socially acceptable' traits.

When looked at in this way preconception genetic screening clearly does raise important and broader ethical and social issues. The HGC does not find these sufficiently weighty to prevent such screening, but at least they do set out the various arguments, including the potential impact on disabled people. While one may not agree with their conclusions, the report deserves to be read in full, rather than simply depending on press-release summaries.