Debate over genetic profiling of newborns 20/5/04. By the Public Health Genetics Unit In its White Paper of June 2003, 'Our inheritance, our future - realising the potential of genetics in the NHS', the Government asked the Human Genetics Commission (HGC) to work with the National Screening Committee (NSC) to consider the idea of genetic profiling of newborns.

This concept is based around existing newborn screening programmes in the UK; it has been suggested that to take DNA samples from new babies and store a genetic profile (whether in the form of key genetic markers or theoretically a complete genome sequence) as part of their NHS electronic patient record. This reference could potentially be used to tailor treatments and direct preventative interventions as knowledge about genetic influences on health develops, so that potential health benefits could be rapidly realised.

The White Paper noted that 'public debate on many of the wider issues' was an essential prerequisite for consideration of implementing such a programme, and therefore requested the HGC and NSC to work together in performing an initial analysis of the ethical, social, scientific, economic and practical considerations of genetic profiling at birth.

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As part of this analysis, the HGC held a meeting held in Bristol on 11-12 May 2004, during which they heard from scientists involved in the 'Children of the Nineties' project. The Avon Longitudinal Study of Parents and Children (ALSPAC), based at the University of Bristol and funded by the Wellcome Trust and Medical Research Council, is a large-scale study of population genetics looking at the genetic and environmental influences on the health of a large cohort of children in the Avon region. DNA samples from 25 000 parents and children are being collected, stored and analysed as part of this initiative.

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Professor Jean Golding, director of ALSPAC, said that a national databank of genetic information for every newborn child could be created based around the ALSPC DNA bank, and stressed that the potential benefits of such a scheme were enormous, with the caveat that proper safeguards to prevent unauthorised access and misuse of the data would have to be established. She proposed that in the future, by accessing a patient's genetic profile, health providers could help them reduce the risk of "heart attack, diabetes, or any other genetically related illness".

A report on the findings of the HGC is due to be released by the end of the year.

Article courtesy of the Public Health Genetics Unit .

Image credit: Anthea Sieveking