17 July 2007
ByAppeared in BioNews 416
A US survey on public attitudes towards genetic testing has revealed that 54 per cent of respondents support testing of children to determine the risk of diseases that may develop later in life, such as diabetes and heart disease, while 39 per cent would consent to testing only if a treatment for the respective disease existed. The University of Michigan's CS Mott Children's Hospital National Poll on Children's Health conducted an online poll on over 2,000 randomly selected adults, of which two-thirds were parents, and based their findings on the responses of the 1500 people who replied. The poll also sought respondents' opinion on banking their own - or their children's - DNA in a national storage facility: 38 per cent said they would, 33 per cent said they would not, and 29 per cent were undecided.
Lead researcher Beth A. Tarini said: 'Some parents feel that even without a treatment, genetic testing will better prepare them to deal with their child's illness. Others may simply hope that testing may lead to the faster development of a cure'. Commenting on the findings, Matthew Davis, director of the National Poll on Children's Health, said, 'There's considerable debate in the pediatric community about genetic testing when there is no cure for a particular disease. This is a very difficult issue, and that's why we felt it was important to bring that discussion out of the hospital hallways and into the public. Our poll found that the public indeed has some strong, yet varied opinions about how genetic tests should be used.'
The attitudes expressed in the survey, if reflected in the UK, may reveal a tension between opinion and practice, according to Dr Alison Stewart of the UK's Public Health Genetics Unit, the PHG Foundation. The UK BioBank, for example, does not contain proposals to operate in a capacity other than a research resource and genetic material would not be used for clinical purposes. The DNA received would be anonymised and donors would be unable to access any information arising from genetic tests using their DNA. Clinical guidelines on genetic testing for children recommend that testing should only be carried out if it is in the child's best interests and relevant to his or hers immediate healthcare needs. Ethical guidelines maintain that if no treatment is currently available it is better to wait until the child can decide for themselves whether or not to undergo testing.