Britain debates whether to create DNA registry of newborn babies

The national debate about whether, in the future, to collect DNA samples from every newborn baby in Britain arrives in Bristol next week, [May 11 and 12].

In a White Paper published last year the Government asked the Human Genetics Commission and the National Screening Committee to consider the case for screening every baby at birth and storing their genetic profile for future use.

As part of their investigation, the commission will hear from four professors associated with the Avon Longitudinal Study of Parents and Children (ALSPAC) based at the University of Bristol.

Professor Jean Golding, Professor Marcus Pembrey, Professor Michael Furmston and Professor Alastair Campbell will be addressing the practical and ethical issues involved.

Bristol already leads research in this area. As one of the largest population studies of its kind, ALSPAC (also known as Children of the 90s) has opened a new population genetics laboratory in part of the old Bristol Children's Hospital.

The study has been given £3 million by the Wellcome Trust and the Medical Research Council to collect the DNA from 25 thousand parents and children and build up immortalised cell lines. ALSPAC now has the biggest DNA bank from a carefully studied general population anywhere in the world.

ALSPAC's director Professor Jean Golding says that a national databank of every newborn baby could build on Bristol's foundations.

She says: "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 provided the proper safeguards are in place - the benefits to everyone could be enormous. Just imagine if your doctor had access to your complete genetic profile.

"In the world of the future doctors will be able to look at your genotype and forecast aspects of your health throughout your life, helping you to reduce the risk of heart attack or diabetes or any other genetically-related illness.       

"First though - we would need to know what to look for and that's where ALSPAC comes in. We are in a unique position to unravel the information contained in the human genome. No-one else is in our position to make the link between genetic information and so many common conditions. 

"It 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." 

The meeting with the four ALSPAC professors is part of a two-day visit to Bristol by the Human Genetics Commission.

On Tuesday May 11, at 2pm the commission is holding its open plenary meeting at the Bristol Marriott Royal Hotel.    Members of the public are welcome to attend as observers.

The White Paper Our Inheritance Our Future - Realising the potential of genetics in the NHS (June 2003) - sets out the Government's commitment to developing genetics knowledge, skills and provision within the NHS.

In a foreword to the paper Tony Blair says: "The more we understand about the human genome, the greater will be the impact on our lives and on our health care. 

"As an increasing number of diseases are linked to particular genes or gene sequences, we will be able to target and tailor treatment better to offset their impact and even to avoid the onset of ill-health many years in advance."

ALSPAC's new Population Genetics Laboratories which opened in November 2003 are designed to provide an unlimited supply of DNA from the study children and their mothers.  No other study in the world has such a large DNA collection from a carefully studied normal population - or such a sophisticated system for growing "immortalised" human cell lines from blood samples.      

Thirty years ago it was discovered  that if white blood cells or lymphocytes  were separated from a blood sample and then infected with a virus in the laboratory, the infected cells would grow indefinitely. Because these cells do not die, they are described as immortalised - and they provide ALSPAC researchers with a never-ending supply of DNA to be analysed and then compared with our database. The DNA from the cohort is not tied to names, but to data about individuals.

ALSPAC The Avon Longitudinal Study of Parents and Children (also known as Children of the 90s) is a unique ongoing research project based in the University of Bristol. It enrolled 14,000 mothers during pregnancy in 1991-2 and has followed the children and parents in minute detail ever since.