Joint Press Release from Consumers’ Association, GeneWatch UK and Dr Ian Gibson, MP
The House of Commons finally turns its attention to the £45 million research project Biobank which aims to investigate the genetic information contained in DNA samples collected from 500,000 volunteers. So far, Parliament has not debated the questions raised by this unprecedented, huge database. Ian Gibson, MP for Norwich North and Chair of the Science and the Technology Select Committee, will start off the necessary parliamentary scrutiny with an Adjournment debate on the evening of Wednesday 3rd July.
Ian Gibson explains: "It is not good enough for the Department of Health to hide behind expert committees and an ongoing review process. This issue needs political and departmental leadership. Obviously Biobank needs to be organised and administered by experts. But it needs to be scrutinised and publicly debated by everyone, and first of all by MPs."
He will demand answers to questions of confidentiality, ownership and patenting of insights derived from the Biobank. A further problem is the membership and structure of the ‘independent panel’ that will be set up to steer and control the use of Biobank. "We need to get this right", Ian Gibson says, "We need to find a structure that people can trust. The magic formula for this cannot be found behind closed doors."
Helen Wallace from GeneWatch says: "Biobank raises critical issues about the future of health care and about the protection of personal genetic information. It is very important that these questions are addressed publicly and by Parliament before Biobank is launched."
The Consumers’ Association, too, welcomes that the Department of Health will answer questions in Parliament. Nikki Ratcliff states: "We have been demanding clear political leadership on the questions raised by genetic testing for some time now. Advances in genetic medicine could bring potential benefits to the health and health care of the public. But our research clearly shows that people want clear guidelines and efficient protection to ensure that their data won’t end up in the wrong hands."
For further information, please contact:
Dr Helen Wallace, GeneWatch UK: 01298 871898
Gareth Headon, Consumers’ Association: 020 7770 7106
Dr Ian Gibson: 020 7219 4038