The fertility regulator has called for DNA testing websites to warn customers about the risks of uncovering traumatic family secrets and underlying health traits.
Sites such as Ancestry.com, 23andMe and DNA.com offer customers the chance to discover long-lost relatives by having their DNA analysed, typically after providing a saliva sample. The services usually cost less that £100.
By cross-checking matches on social media sites, users can even identify other family members who have not shared information about their DNA.
The Human Fertility and Embryology Authority (Hfea) has expressed alarm about the ease with which users of such sites can uncover the names of sperm and egg donors, including those who chose to donate anonymously, and their other offspring.
Board members called for the sites to do more to inform users about the potentially unwelcome consequences of tracing their genetic relatives and where they can get counselling about such discoveries.
A paper presented to Hfea’s board last week said consumer DNA testing presented a “fundamental change” to the context in which Hfea worked, where much of the legislation assumes donors will stay anonymous.
Margaret Gilmore, the deputy chair of the authority, called for a “very robust response within the confines of the law”. She said: “It would be great if we could encourage more information about the consequences of going on to the websites.”
Gudrun Moore, a professor of clinical and molecular genetics at Great Ormond Street Institute of Child Health, said: “I think quite a few people who use 23andMe need counselling, irrespective of whether they are chasing up a donor.”
She urged the companies involved to be more explicit about what DNA tests could uncover. “If you are going to go and say: ‘send me your spit’, you might end up with [information about] a whole load of incidental genes that could cause you some anxiety with your health and/or your family, irrespective of whether you find a long-lost uncle that you never knew you had.”
Moore said two of her friends who had used the service had uncovered information detailing a family history of heart failure. “Both are completely and utterly traumatised about having heart attacks in the future,” she told the meeting.
Yacoub Khalaf, the medical director of the assisted conception unit at London’s Guy’s and St Thomas’ NHS foundation trust, said: “The message for donors in the future is clear: anonymity is something of the past.”
But he asked: “Why are we [Hfea] covering people who are making a choice to dig deeper into something that could spell bad news?”
Sally Cheshire, the chair of the authority, replied that Hfea had a responsibility to warn patients who had used regulated fertility clinics about family secrets being uncovered via DNA sites. “Anecdotally we believe that two-thirds of donor-conceived people don’t know they are donor-conceived,” she said.
She pledged that Hfea would be contacting the websites involved and would also discuss the issue with officials from the Department of Health.
The Donor Conception Network, a charity that supports families through donor conception, welcomed Hfea’s pledge to try to tackle the issue. Its director, Nina Barnsley, said: “Donors who think the anonymity can be protected are suddenly discovering they can’t. Even if you don’t upload your DNA anywhere, you can still be found. It’s a new world and we are all playing catchup.”
Her clients have included a donor-conceived child whose biological father was not the person they had previously believed.
Barnsley added: “The biggest issue is family secrets are being outed with no support network in place. There could be an awareness campaign to alert people to this and get donors to come forward so at least everyone knows and information does not come out in unplanned ways.”
A spokeswoman for 23andMe later pointed out that its service does not offer information on the risks of heart attacks.
She added: “If a 23andMe customer receives a result they weren’t expecting, we do have trained experts on hand who can help explain what the report means as far as genetic risk. We are very transparent with the information we give to our customers. The customer should be fully informed of what all the possible outcomes of the report might be, before they have even sent off their kit for testing.”