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Genetic profiling at birth: a storm in a teacup?

18 August 2003
By Juliet Tizzard
Director, Progress Educational Trust
Appeared in BioNews 221
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 genetic tests before the public is ready. 'That's where the public has concerns,' she said. 'Insurance, employment, ways in which people with a certain genetic trait might be discriminated against.' According to the Financial Times, she concluded that the Human Genetics Commission (HGC) was unlikely to recommend that such a system be introduced.

Baroness Kennedy's comments quickly became the subject of news stories in other newspapers. The Observer newspaper ran the story under the title 'Fears over genetic profiles for all'. The article opened 'Plans for every baby to be genetically screened at birth came under fierce attack yesterday from the Government's advisory watchdog on the new science'. And so, a relatively anodyne comment was represented as a clash of ideas between the government and its own watchdog.

Another consequence of the flurry of excitement to Baroness Kennedy's comments is that what started off as a possible future service has now become, in the public imagination, a reality. Readers of the news services which ran the story could be forgiven for thinking that genetic profiling of newborn babies is about to arrive in maternity units across the country. However, the white paper's proposal on this issue is actually rather cautious. It states the need for public debate on the issue and, should newborn screening go ahead, for 'statutory safeguards' to protect individuals' genetic information. The proposal itself simply says, 'As a first step, we will ask the Human Genetics Commission to... conduct an initial analysis of the ethical, social, scientific, economic and practical considerations of genetic profiling at birth.'

As John Gillott observes in 'Putting genetics into practice' (BioNews 214, 30/6/03), talk in the white paper of genetic screening of newborn babies is one of the more 'headline-grabbing' proposals which caught the imagination of some journalists when the white paper was first published. Even though its tone is more speculative than many journalists would have us believe, the proposal does at least present newborn genetic profiling as a realistic option - if a future one. Perhaps now that it is out in the open, it's time for a more sensible public debate to begin.

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...
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...
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