December 2, 2014

expert reaction to UK launch of 23andMe genetic testing service

A new personal genetic testing service, 23andMe, has been launched in the UK. The service provides the raw genome of the user as well as tools for deciphering it.

Prof. Frances Flinter, Professor of Clinical Genetics at King’s College London, said: 

“The UK has an excellent NHS Clinical and Laboratory Genetics. People who are concerned that they may carry, or be affected by, an inherited condition can ask their GP or hospital clinician to refer them to their Regional Genetics Centre. In order to advise people properly it may be necessary to take a detailed family history, examine a child and its parents and arrange other tests such as blood tests or X-rays before it becomes clear whether or not genetic testing may be useful.

“These preliminary steps, and information about medical genetic test results in other family members, are essential in order to determine which genes should be screened in a particular individual. Clinical Geneticists/Genetic Counsellors can interpret the results of relevant genetic tests, advise on any subsequent screening that may be indicated and also help to contact other family members who may be at risk.

“Genetic testing without the professional support of experienced staff may be less informative or even misleading.”

Prof. Shirley Hodgson, Emeritus Professor of Cancer Genetics, St. George’s Hospital, said: 

“This type of test is very open to misunderstanding. The results can indicate very slight alterations of risk for certain traits or diseases which can be misinterpreted unless explained in detail by a medical practitioner who understands such information. Although the press release says only a minority of people tested ask for a detailed analysis of the implications of the results from a doctor, it is likely that this figure is much higher, and implies that NHS time will be taken up by discussions of the implications of a probate test.

“The possibility of discovering a genetic alteration conferring a high risk of a certain disease may also occur in an individual to whom genetic counselling has not been made available as a routine, with possible adverse consequences. Genetic variants conferring only small risks may in contrast be over interpreted and cause undue and inappropriate anxiety.”

Prof Mark Thomas, Professor of Evolutionary Genetics at University College London, said: 

“For better or worse, direct-to-the-consumer genetic testing companies are here to stay. One could argue the rights and wrongs of such companies existing, but I suspect that ship has sailed. 23andme have enormous resources and leading scientists on their advisory board.

“None-the-less, it is important that independent scientists and government bodies remain vigilant to ensure that such companies produce scientifically accurate, responsibly formatted and non-alarmist reports to their customers. The discussion should now focus on how such companies might interact with the medical profession for the benefit of their customers and society more generally.”

Prof. Tim Spector, Professor of Genetic Epidemiology at King’s College London, said:

“I am in favour of any way to get the UK public more involved in science and genetics – and this is a great way to get educated in the power of genetics as well as its limitations. I did the same test a few years ago and the website is informative and fun.

“Like our knowledge of genetics – the implications of the results keep changing – so don’t take the predictions too seriously.

“23andME share their data with other academic groups like ours as well as companies to make joint discoveries.

“We have recently launched the Britishgut project (britishgut.org) which does the same thing – but for the microbes in your gut, and it won’t tell you their hair colour or whether they are likely to go bald.”

Prof Eric Miska, Herchel Smith Chair of Molecular Genetics at the University of Cambridge, said: “Genome sequencing is here today. Yet our understanding of the impact of genome variation on human individuality and health is in its infancy. Society needs to discuss how individual human genome sequences should be accessed safely and how it can be shared. 23andMe and other similar commercial services can give individuals a glimpse of the fun, excitement and risks associated with human genome data.”

Declared interests

Prof Spector does some work with 23andme as an academic collaborator in gene discovery.

No other interests declared.