The UK's Human Fertilisation and Embryology Authority (HFEA) is urging companies that offer direct-to-consumer DNA testing to provide more comprehensive warnings to customers.
A recent paper presented to the HFEA board, oulined how egg and sperm donors, as well as donor-conceived people, could be impacted by direct-to-consumer DNA testing and 'matching' services which offer to connect customers who are genetically related to each other. DNA testing services could reveal someone's unknown donor-conceived status, or uncover the identity of a donor who believed they had anonymity.
'Donors who think the anonymity can be protected are suddenly discovering they can't,' said Nina Barnsley, director of the Donor Conception Network. 'Even if you don't upload your DNA anywhere, you can still be found. It's a new world and we are all playing catch-up,' she told The Guardian newspaper.
While popular DNA testing companies such as 23andMe, Ancestry.com, and DNA.com can only 'match' users within their databases, customers could still use a single match to track down other relatives through social media or birth and marriage records. And while these companies may disclose that unexpected genetic information may be discovered 'in the small print', the HFEA paper argues that customers may not be adequately warned of the risks, nor offered any support.
'We found no DNA testing and matching services that mention that a need for professional emotional support may arise from relatedness matching, or via further inference from matching,' stated the HFEA paper. 'No service offers professional emotional support to users, nor signposts to other available support.'
While the HFEA does not have the authority to force companies to provide warnings, the HFEA paper outlines a response plan that includes raising awareness of these risks and providing information and support through the HFEA website and clinics, and reaching out to DNA testing companies to have a dialogue about why greater warning should be provided on their websites.
HFEA Chair Sally Cheshire has pledged that the websites will be contacted and that these issues will be discussed with the UK's Department of Health, The Guardian reported.