The UK's Nuffield Council on Bioethics has reported that direct-to-consumer personal genetic profiling services used to predict people's genetic susceptibility for common diseases, such as Parkinson's and diabetes, are often inconclusive, misleading and can potentially cause unnecessary anxiety, complacency or distress when no treatment is available. The potential harms did not justify restricting sales, except to prohibit the genetic profiling of children.
The report warned of largely unregulated businesses trying to capitalise on the promise of 'personalised medicine' through offering online healthcare information and services. Health and advertising regulators should request companies provide evidence to support claims and provide public warnings about tests' predictive value and insurance implications, it suggested. The report concluded the Government should do more to train its healthcare providers and to educate the public on how to use online health services safely and effectively.
The Chair, Professor Christopher Hood of Oxford University, explained: 'What we want to do in general, is neither to ban these developments nor to make them compulsory, but to find ways of helping people to use them more effectively and to provide protections where those are needed'.
The Nuffield Council on Bioethics, an independent body established to examine ethical issues in biology and medicine, looked broadly at direct-to-consumer testing and ways of accessing online healthcare information, the purchase of medicines and record keeping.
The Working Group recognised that online health services could bring significant benefits by increasing convenience and choice, empowering individuals to better manage their health and seek earlier or preventative treatment without accessing public resources. It warned, however, of significant risks when bypassing physician involvement.
The report followed a two-year inquiry and was published on 12 October 2010.