United Kingdom - Test children’s genes before they have sex

Citation

(2011), "United Kingdom - Test children’s genes before they have sex", International Journal of Health Care Quality Assurance, Vol. 24 No. 6. https://doi.org/10.1108/ijhcqa.2011.06224faa.010

United Kingdom - Test children’s genes before they have sex

Article Type: News and views From: International Journal of Health Care Quality Assurance, Volume 24, Issue 6

Keywords: Genetic testing, Healthcare screening programmes, Healthcare ethics

Children should be encouraged to undergo genetic testing before they become sexually active to check whether they could pass on “hidden” abnormalities to their offspring, a government advisory group will say this week.

The tests raise questions about the extent to which doctors should intervene in nature.

The Human Genetic Commission will recommend that so-called preconception tests should be much more widely available. The screening allows specialists to see if potential parents are hidden carriers of genetic conditions.

Those who are found to be at greater risk of passing on a disease or abnormality have the option to seek IVF treatment, use donor eggs or sperm, or to adopt instead.

The tests raise questions about the extent to which doctors should intervene in nature. Suggesting that children have their genetic make-up analysed will add to the controversy.

The Commission was asked in 2009 to review the ethical and legal questions surrounding preconception testing and will present its findings to the Department of Health this week. It has concluded that there are strong reasons to make preconception testing widely available to anyone who needs it, based on the principle that parents should have the maximum information and autonomy over their reproductive decisions.

The Commission will advocate teaching children about the transmission of genetic conditions as part of their sex education, and encourage them to take a test before starting a sexual relationship.

Schools in some Australian states and Canadian provinces already test children for certain genetic conditions as a matter of routine.

Health ministers will respond to the report in the coming weeks to see what recommendations it follows. However, they will be concerned about the cost of any widespread extension of testing to the teenage and adult population as a whole, as opposed to mothers who are already pregnant. They will also be wary of a backlash from church groups and ethical campaigners concerned about a further move in the direction of “designer babies”.

The report argues that there is no ethical difference between preconception testing and antenatal screening. It argues that it is preferable for prospective parents to know about any genetic conditions in advance, rather than having to make a potentially agonising decision over whether to continue with a pregnancy after a condition has been diagnosed through antenatal screening.

At present, preconception test kits cost about £400 each and are able to test for around 100 diseases. A new test, developed by the National Center for Genome Resources in New Mexico, could give results for 580 conditions. The cost for tests is expected to fall quickly.

The Commission recommends extending education about preconception testing to the adult population through GPs’ surgeries, family planning centres, chemists and community health visitors. Once an affordable version of the test becomes available through the NHS, it also envisages these bodies dispensing the tests to individuals.

In order to limit the cost of the proposals, ministers could decide to make preconception testing available through the NHS, but only to individuals with a family history of genetic conditions.

For more information: www.telegraph.co.uk