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Genetics watchdog looks at newborn profiling

17 May 2004
By BioNews
Appeared in BioNews 258

The UK's Human Genetics Commission (HGC) has considered the issues surrounding the testing and storing of DNA samples from all newborn babies, at a meeting held in Bristol last week. The event was a follow-up to a government commitment to look at genetic profiling of newborns, made in the White Paper on genetics last summer. Members of the HGC heard from scientists running the ongoing 'Children of the Nineties' project, which is studying the effect of genes and environment on the health of thousands of children living in the Bristol area.

Officially known as the Avon Longitudinal Study of Parents and Children (ALSPAC), the Children of the Nineties project enrolled 14,000 pregnant women and newborn babies during 1991 and 1992. The parents filled out questionnaires detailing the mother's pregnancy, as well as their health, lifestyle and family history. The Wellcome Trust has recently given £3 million to the project, to fund the collection of DNA from 25,000 of the participating parents and children.

Jean Golding, head of ALSPAC, said that the benefits of collecting genetic information about every newborn baby could be 'enormous', provided the proper safeguards were in place. She cautioned that 'the idea of collecting DNA from every child as they are born needs to be thought through carefully to make sure that the information can't be misused'. But if future doctors had access to a person's genetic profile, then it could help them reduce the risk of 'heart attack, diabetes, or any other genetically related illness', she said. 'This isn't science fiction any more. This is very exciting medical research which will start to pay off in the lifetime of today's children'.

Meanwhile, US scientists have announced plans for the National Children's Study, another project aiming to look at the effects of environmental effects and genetics on children's health. The government-funded project will follow 100,000 children from birth to the age of 21, and should begin in 2006.

Britain debates whether to create DNA registry of newborn babies
Medical News Today |  7 May 2004
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Daily Mail |  12 May 2004
Scientists debate DNA profiles for newborns
The Scotsman |  11 May 2004
20 August 2012 - by Dr Chloe CY Wong 
The Avon Longitudinal Study of Parents and Children (ALSPAC), also known as the Children of the 90s study, is a Bristol University-based project that has followed children born to over 14,000 pregnant women who enrolled between 1991 and 1992. A wealth of health, environmental and lifestyle data, as well as biological samples has been collected by this longitudinal population-based study over the past 21 years...
4 April 2005 - by BioNews 
The UK's Human Genetics Commission (HGC) and National Screening Committee (NSC) have published a joint report on the potential testing of newborn babies to detect genetic variations with health implications. The document, entitled 'Profiling the newborn', concludes that routine newborn genetic profiling is not likely to be affordable for at...
17 May 2004 - by Juliet Tizzard 
We report this week on a public meeting discussing the question of whether, in the future, all babies should be genetically profiled at birth. The government's genetics watchdog, the Human Genetics Commission met with researchers in Bristol to discuss the feasibility of such a programme, as well as its possible...
18 August 2003 - by Juliet Tizzard 
This week's BioNews reports on an interview with Human Genetics Commission chair, Baroness Helena Kennedy, in which she describes the idea of carrying out genetic profiling of newborn babies as 'unlikely'. In the interview, published in the Financial Times, Kennedy voices her concern that we might rush ahead with new...
18 August 2003 - by BioNews 
Baroness Helena Kennedy, chair of the UK's Human Genetics Commission (HGC) has said in an interview with the UK's Financial Times that the HGC is likely to reject proposals to genetically screen all newborn babies. In a White Paper issued in June 2003, the government proposed new measures to strengthen...
27 June 2003 - by BioNews 
The UK government unveiled its plans for genetics in the National Health Service (NHS) last week, in the form of a white paper entitled 'Our inheritance, our future - realising the potential of genetics in the NHS'. The document lays out new measures for strengthening existing genetics services, and for incorporating...
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