Jeremy Laurance: Genetic risk profiling may be harmful if nothing can be done
Friday 30 April 2010
For a man about to learn whether he was under a death sentence, Stephen Quake was remarkably cool. Asked how he felt about receiving a detailed breakdown of his chances of developing any one of 55 diseases he replied: "It's certainly been interesting."
How typical of a scientist. But those of us who are not scientists may have a different response. Analysis of your genome could reveal you were carrying a gene for Huntingdon's disease, a condition that kills people in their 20s and for which there is no treatment. Would there be benefit in that?
This is the fundamental difficulty with genetic risk profiling – the information may be valuable in some cases, allowing patients to protect themselves against increased risks (as Stephen Quake has done by starting treatment with statins to prevent heart disease). It may enable doctors to re-emphasise messages on diet, exercise and smoking for patients with a predisposition to obesity, diabetes, or lung cancer – environmental causes that have a far bigger impact than mere genes.
But in others, it may be harmful when there is nothing that can be done. In this case the only outcome is that the individual lives are under the shadow of the threatened disease.
How is the information to be shared? If I have an increased risk of diabetes, it will be of importance not only to me but also to those who share my genes – my children and other relatives. Should they be told?
There are other difficulties. Doctors find it hard enough explaining the risks of drugs or operations to patients in terms that are comprehensible. How will they cope with the huge quantities of data involved in a whole genome analysis?
In an opinion piece published with the paper in The Lancet, Professor Henry Greely of Stanford Law School estimates the average person might need information on 100 genetic risks uncovered in analysis of their genome. Even if only three minutes per disorder is allowed, the consultation would take more than five hours, not including the background research. How can this be provided and who will pay for it?
Whole genome sequencing is already occurring and will soon be used in medical practice. The genie cannot be put back in the bottle. But dealing with the new technology will present many challenges. It is time to start thinking how to deal with them now.
Life & Style blogs
Men in tights: getting to the bottom of the latest trend
City traders pay £200 for a quick hangover cure
Stephen Hawking: NHS is Britain's finest public service and must be preserved from commercial interests
The enemy within: People who hear voices in their heads are being encouraged to talk back
Eight-year-old girl Camilla Lisant suggests possible cancer treatment to her scientist father over the dinner table
- 1 Three-year-old boy shoots pregnant mother and father in New Mexico
- 2 Stephen Fry explains what he would say if he was 'confronted by God'
- 4 Gorillaz Phase 4: Cartoon supergroup is back as new artwork is unveiled
Negotiable: Tradewind Recruitment: PMLD Teacher A specialist primary school i...
£15000 - £30000 per annum: Recruitment Genius: Now our rapidly expanding and A...
£15000 - £20000 per annum: Recruitment Genius: Are you passionate about great ...
£20000 - £30000 per annum: Recruitment Genius: This fast growing reinforcing s...