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Genetic profiling of babies is not coming soon

17 May 2004
Appeared in BioNews 258
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 implications.

The government, in its genetics white paper, Our Future Our Inheritance, asked the Human Genetics Commission to look into the issue of genetic profiling last summer. But what exactly does genetic profiling mean? In the government's own words, we might, in the future, be able to 'screen babies at birth... and produce a comprehensive map of their key genetic markers'. The baby's stored genetic information could then be used 'throughout their lifetime to tailor prevention and treatment regimes to their needs.' Such screening would not just represent an incremental increase in current newborn screening programmes, which aim to identify very rare genetic conditions. Instead, it would mean screening for genetic variations that perhaps 10 percent of population carry. Those variations might indicate an increased risk of particular common conditions such as diabetes or heart disease or they might show how a person will respond to a particular drug. Having such information throughout life could help doctors give tailored health advice to their patient or it could give them information about which medication to prescribe or, perhaps, which vaccines to administer.

Understood in this way, genetic profiling at birth seems a million miles away from the 'barcode babies' described in the Daily Mail. That doesn't mean that there aren't potential problems with storing everyone's genetic information for use throughout their life. Safeguards will be needed to make sure that the information is not used to discriminate against the very people it is designed to benefit.

But there is a more basic limitation at present which will need to be resolved. It's all very well having information about someone's genetic makeup. But the information will be useless unless we have a full picture of what it means to have a particular set of genetic variations. One variation might indicate a risk factor for one condition, but it could also protect against another. We need to carry out more research to understand common genetic variations and their link to both disease and health before a newborn genetic profiling programme is rolled out.

Juliet Tizzard is the Founder of BioNews and was formerly Director of the charity that publishes it, the Progress Educational Trust (PET). She is coauthor of Key Issues in Bioethics (buy this book from Amazon UK) and Designer Babies: Where Should We Draw the Line? (buy this book from Amazon UK).

17 May 2004 - by BioNews 
Nobel Laureate Sir John Sulston has called for new UK legislation to prevent genetic discrimination. The former head of the Sanger genome sequencing centre in Cambridge presented his proposals to the Human Genetics Commission (HGC) last week. Sulston, a member of the HGC, told the Guardian newspaper that 'the main...
17 May 2004 - by BioNews 
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...
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...
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