Dramatic advances which are imminent in the treatment of genetically-determined diseases may not translate into improved health care if patients' interests and views are overlooked, it has been claimed.
Mr Alastair Kent, president of the European Alliance of Genetic Support Groups, said a major policy shift was required to ensure the patient perspective of all those affected by chronic ill-health and currently incurable disease was taken on board.
Patients had to be incorporated into the decision-making processes of health services, health professionals and pharmaceutical/biotechnology industries, if only to ensure acceptance of highly innovative medicine, he said.
Without the "active creation of a committed, properly resourced body of advocates for innovation", genetic medicine in the 21st century could become like nuclear power at the end of the 20th, said Mr Kent, who represents many patient groups affected by genetic disorders.
The emerging field of genetic medicine might be viewed as "something which initially had great promise but which failed to deliver because, at the end of the day, society felt unable to assimilate the perceived risks. And it had lost trust in both the scientists and systems set up to regulate them", he told the Brussels conference on biotechnology.
If this was not to be the fate of genetic medicine and the contribution biotechnology would make to human health, active participation by patients in the process of planning and delivery of innovative medicine and in arranging change was necessary.
The Labour government in Britain had committed itself to equity and excellence in service provision, "turning its back on the previous administration's belief in market forces as a means of determining health-care provision", Mr Kent said.
The advent of left-of-centre governments elsewhere in Europe was likely to result in similar emphasis on their health-care systems. He added: "If this rhetoric is to produce real change for patients and to be more than the political equivalent of rearranging the deck chairs on the Titanic, then the process of health-care policy-making will have to change radically."
