HFEA considers proposing donor anonymity law changes

The Human Fertilisation and Embryology Authority (HFEA) is considering ways gamete donor anonymity laws could be changed, as the advent of straight-to-consumer genetic testing has 'thrown into question' the assumption of anonymity.

Speaking to the Guardian newspaper HFEA chief executive Peter Thompson said that genetic testing from websites such as 23andMe and Ancestry were making it impossible to preserve the anonymity of donors. This meant that the Authority was considering changing the law first introduced in 2005 in the UK, which currently allows donor conceived people to access identifying information about their donor parent at the age of 18, but not before.

He told the Guardian: 'Given the trend, I can't see how the existing legal framework is going to cope with the way things are going.'

The HFEA is planning to consult on and propose legislative changes by the end of the year, and was considering how to deal with the question of donor anonymity in the face of ubiquitous genetic testing. Thompson told the Guardian one option being considered was 'a presumption of openness almost from the word go'.

However, the exact timing of the removal of anonymity was an important point said Progress Educational Trust director Sarah Norcross: 'Any changes to the timing of donor identity release will give rise to a number of complex issues, and will fail to satisfy everyone.'

Instead she urged that HFEA take note of the fact that donors, fertility patients and their children are a diverse group of people with different needs, and changes in legislation need to reflect this. Imposing a single model should be avoided, she said:

'Just because early identification of donors has become more likely, does not mean that this should become a legal requirement. Making donors mandatorily identifiable earlier in the process may cause more problems than the HFEA hopes to solve. Will the donor be identifiable to the intended parent(s)? If so, at what point in the treatment pathway? For example, will this become part of the process of choosing a donor? Or will the donor's identity only be released once a child is born?'

'Who will be responsible for the release of this information, and for associated support services? Who will pay for these services? What will be the impact on people's willingness to donate? Will fertility patients become more likely to seek treatment overseas, where such rules do not apply?'

Thompson argued changing the law to remove anonymity was unlikely to affect people's willingness to donate gametes, and pointed out that similar concerns had been voiced when the law was first changed to remove anonymity in 2005. An initial dip in donations occurred, and then recovered.

'There's no hard evidence that you would lose donors.' he told the Guardian.