30 June 2003
Appeared in BioNews 214Back in April 2001, Alan Milburn, the then Secretary of State for Health, announced that the Government would publish a Green Paper on genetics in 2002, drawing together advances in the field, mapping out the steps needed to prepare the NHS 'so it can harness the benefits of these future advances' and laying the basis for 'a real national debate on the future benefits of genetics for our country.' After some delay, we now have the fruits of the efforts of those involved, in the form of the upgraded White Paper on human genetics: Our Inheritance, Our Future: Realising the potential of genetics in the NHS.
Headline-grabbing suggestions and proposals include taking a genetic profile of all newborn babies and making it an offence to test a person's DNA without their knowledge or consent. But the main body of the White Paper focuses on science and the NHS. It amplifies themes that have been in the air for some time, in particular in the central claim that 'the new genetics knowledge and technology has the potential to bring enormous benefits for patients: more personalised prediction of risk, more accurate diagnosis, safer use of medicines and new treatment options. A revolution in healthcare is possible, but it will not happen overnight.'
The significance lies less in the ideas than in the fact that this vision now has the clear stamp of Government approval. Set alongside the bold message, the individual proposals and total spend (£50m over three years), can seem piecemeal and lacking in ambition. However, this is in part, at least, a strength: specific projects such as screening for genes linked to familial hypercholesterolaemia both have merit in their own terms and can be viewed as pilots for others of a similar character. The Government promises to revisit the issues in three years time.
A number of commentators, from a variety of backgrounds, worry about the prevalence of 'gene hype'; indeed this is a theme that Progress Educational Trust has taken up in its debates. For some, this White Paper is another example of building up unrealistic expectations. The charge has some merit, and it needs watching. In the Government's case this probably reflects a desire to be seen to be promoting a positive vision as much as anything else. Additionally, some of the timetables set for when, for example, gene therapy, is expected to become a part of mainstream medicine, owe something to a target-setting mentality that is unsuited to experimental research. Nevertheless, the concrete proposals, both to spend a significant portion of the £50m on improving the laboratory testing services, and to spend smaller amounts on gene therapy research into single gene disorder, will prove useful however they are contextualised.
The final section of the White Paper is concerned with 'Ensuring public confidence'. This area can only be touched on here. What seems clear is that the Government wants to endorse the concerns and worries raised by the Human Genetics Commission, without committing itself entirely, whether that is by limiting police access to genetic databases, or restricting insurers and employers from accessing genetic information. Accordingly, we can expect these and other issues to continue to provoke debate in the coming years.
John Gillott is policy officer at the Genetic Interest Group