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Generations Game for a Health MoT 50,000 Scots Sought for [GBP]6.2m Study to Change Face of Modern Medicine

Posted on: Thursday, 2 February 2006, 09:01 CST

By HELEN PUTTICK HEALTH CORRESPONDENT

FAMILIES across Scotland will help to change the face of modern medicine by taking part in a multi-million-pound research project.

A recruitment drive to find 50,000 volunteers for the UK's largest family heathcare study was officially launched today.

Doctors and scientists are aiming to create a huge database of DNA and patient information to help pinpoint who is most at risk from common conditions such as heart disease, cancer and mental illness.

If successful, the programme could hail an era where doctors can predict what illnesses people are likely to get by reading their genes and then provide preventive treatment and lifestyle advice.

The researchers also hope the project will result in breakthroughs leading to new, more accurate drugs.

Families who volunteer will be asked to fill in a questionnaire about their health, provide a small blood sample and undergo medical checks.

Professor David Porteous, of Edinburgh University, one of the leading lights behind the project, said: "The families who contribute to it will hopefully be doing themselves good by having the benefit of a general health check and by being part of a study that keeps them up to date and informed about how the project is progressing.

"But they will also be creating a legacy for generations to come and for the population as a whole."

Academics from Aberdeen, Dundee, Edinburgh and Glasgow universities have united to take the scheme forward. The first phase will last two and ahalf years at a cost of [GBP]6.2m.

Andy Kerr, health minister, today announced [GBP]4.4m in funding for the research.

As well as improving the lives of individuals prone to serious illnesses such as heart disease and osteoporosis, Mr Kerr said managing their health better had the potential to free up resources to use elsewhere in the NHS.

He added: "The benefits of the research don't stop there. We have the potential to develop novel therapies which not only help patients but also help the Scottish biotechnology economy."

GPs are helping enlist volunteers, although people can put themselves forward on the Generation Scotland website.

Researchers will not be given personal details about the participants and all medical information will be kept confidential and anonymous.

However, participants will receive feedback on the results of their initial check-up.

Susan Browne, 35, a Glasgow University researcher, has volunteered along with her brother Niall. She was attracted by the idea of a "health MoT".

She added: "I understand how important it is to recruit and it is a completely new and groundbreaking study. There is an element of wanting to contribute to the greater good."

AlexWhyte, 64, an engineer from Dundee, also joined. His daughter, Fiona, was told about it at her diabetic clinic at Ninewells Hospital in Dundee. He said: "I would encourage other families to take part. There is nothing to fear and just the thought of helping someone was motivation enough for me."

Professor Andrew Morris, of Dundee University, chairman of the Generation Scotland scientific committee, said: "We are delighted that after years of careful preparation we are in a position to create a uniquely Scottish resource of the highest international standing."

How you can join in research to improve the wellbeing of future families

What do I have to do?

People interested in volunteering are being directed to the Generation Scotland website - www. generationscotland. org - for information and contact details. Ideally researchers are looking for families including both parents and at least two grown-up children.

Those who join up will fill in a questionnaire about their family's medical history and attend an appointment which will be similar to a detailed GP check-up. Volunteers will be asked to give a blood sample and staff will take various body measurements ranging from weight to bone density. An electrocardiogram for checking heart function will also be carried out. In the longer term, Generation Scotland may ask volunteers if they are interested in contributing to further research.

Who will have access to the information?

Generation Scotland researchers will not have the names or addresses of participants. Instead people taking part will be identified by a code. If the investigators want to find out if any participants have developed a particular condition since the study began, they will turn to the NHS statistics division.

This department holds information by patients' medical record index numbers. Records of people taking part in the project will be marked. If police want access to the DNA records, they would have to go through the courts. Generation Scotland would challenge requests.

Will I find out about the potential health problems facing my family?

Information from the initial check-up is likely to be fed back to participants through their GPs. Patients would be made aware of any potentially serious problems detected by the tests. Volunteers will also receive newsletters about the project and its discoveries.

What happens to all of the information?

The researchers will examine the DNA samples provided by participants. Initially they will be searching for the most distinct genetic markers which make one person different from another, looking for patterns which may be associated with a particular disease. Further on, they expect to examine protein behaviour - how this may predispose individuals to chronic conditions and how that relates to the genes they have inherited.

Source: Herald, The; Glasgow (UK)

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