The National Health Service (NHS) in England is set to offer genetic testing to help determine people鈥檚 risk of聽developing common diseases such as cancer and Alzheimer鈥檚. However, some influential groups have warned that the move could have negative effects, including causing anxiety when people receive the results.
UK health secretary Matt Hancock said the DNA tests would be available through the NHS, but it聽would be a paid-for service. Those taking the tests would have to agree to share their genetic data in an anonymised way with researchers, in the hope that a nationwide database could be used to benefit everyone. The Department of Health is expected聽to publish a green paper this week outlining the plans.
Direct-to-consumer DNA testing companies such as 23andme have expanded their services over recent years to offer risk scores for conditions such as type 2 diabetes as well as providing people with data for family trees. In March, members of parliament on the UK Science and Technology Select Committee launched an inquiry on the benefits and risks of genetic testing for individuals and the NHS.
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In written evidence to the committee, the UK Research and Innovation (UKRI) funding body said that while tests offer potential health benefits, the results can also cause people to overestimate their risk of developing a disease. 鈥淭his may in turn have negative impacts on the emotional well-being of that individual and their family,鈥� it said. Stress and anxiety from results may even have a net negative health impact, it said.
The UK Biochemical Society echoed those fears in its submission to the committee. 鈥淜nowledge of an increased risk for an untreatable disease, where there are no changes of lifestyle that may be beneficial, may cause聽a consumer only stress and聽anxiety,鈥� it said. 鈥淚n this case, the knowledge of this risk may therefore not be able to be considered a benefit to the consumer鈥檚 overall health.鈥�
For these reasons, it is important that genetic testing also involves a聽psychological assessment, says Saskia Sanderson at University College London. 鈥淢any of the potential harms of genomic testing are psychosocial or behavioural in nature.鈥� These include anxiety or stress in response to high-risk results, or false reassurance in response to low-risk ones. 鈥淭he same is true of the potential benefits too,鈥� she says.
Unclear significance
Hancock revealed in March that genetic testing by a private firm suggested he was at higher risk than most men of prostate cancer and he would be visiting his doctor to discuss the finding. However, the UKRI said genetic tests can鈥檛 accurately predict risk of prostate cancer yet, as they look at genetic variants 鈥渢hat are only weakly associated with the disease or are of unclear significance.鈥�
Critics have also suggested that Hancock risks overburdening the NHS by encouraging others with DNA results to see their doctor unnecessarily.
It isn鈥檛 yet clear how many people are going to their doctors for advice after receiving genetic test results. But Nicki Taverner of聽the Association of Genetic Nurses and Counsellors says: 鈥淲e聽have personal experience of聽patients who have received 鈥榳orrying鈥� test results, who were not able to obtain the appropriate information or support direct from the company, who then ask for an NHS referral to genetics services to pick up the pieces.鈥�
A way to avoid misinterpretation is for results to be presented and explained by a genetic counsellor. 鈥淔or example, if an individual is informed that their risk of cancer has doubled, without adequate counselling, this is likely to have adverse effects on their mental health,鈥� wrote the Biochemical Society. 鈥淗owever, whilst 鈥榙oubled鈥� could mean a risk increased from 25 per cent to 50 per cent, it could equally refer to 0.00001 per cent to 0.00002 per cent.鈥�
There are questions over whether the NHS has enough counsellors. One NHS source told 快猫短视频 that there are about 200 genetic counsellors in England.
To reduce the burden on the NHS, the Biochemical Society has聽suggested making firms release test results only through a聽registered clinical geneticist to give people the opportunity for advice and counselling at the time.
The society also warned that laws may be needed to prevent DNA testing firms from passing data to health insurance firms, which could then use the results as聽a factor for determining insurance premiums. One survey by Genomics England found that 95 per cent of the UK public oppose the sharing of their genetic data with the insurance industry.
The Department of Health said it couldn鈥檛 comment ahead of its green paper.
