With consumer DNA testing growing in popularity, it is becoming increasingly difficult to ensure the anonymity of both donors and donor-conceived children.

According to the ongoing Connecte DNA study, there have been more people using consumer genetic testing to reveal information about genetic relatives. With large commercial DNA databanks, the parties involved in donation and conception can now bypass the regulated channels of receiving donor information. Dr Lucy Frith, reader in bioethics at the University of Manchester, presented the findings at the annual meeting of the European Society of Human Reproduction and Embryology (ESHRE).

According to Dr Frith, 'donor-conceived people can use these services to conduct a DNA test to search for their genetic parent; recipient parents can test the child to identify the donor and any other half-siblings; and donors themselves can also take a DNA test to search for the offspring of their donations.' She added: 'the donor (or the donor-conceived child) need not be in a database to be identified – as a close genetic relative may be in the database and thereby traceable.'

Researchers involved in the ConnecteDNA study conducted interviews with sperm, egg and embryo donors, parents through donor conception, and donor-conceived adults. Interim results suggest that commercial DNA testing services, and social media, are being used to find genetic relatives as well as, or instead of, 'official' routes. In the UK, information about donors and donor-conceived people is held on a central register managed by the Human Fertilisation and Embryology Authority (HFEA). Donor-conceived children born after 2005 can request information from the HFEA about their donor when they turn 18.

Professor Joyce Harper, from the Institute for Women's Health at University College London, told BioNews: '...Dr Frith's study interviewing donors and donor-conceived children and their parents is important to understand what drives them to find genetic relatives. As she reports – all options are possible; from donors trying to find their offspring, to parents who are using these tests to trace people related to their own donor-conceived children.'

According to an ESHRE survey in 2015, there are still a dozen European countries that have laws mandating donor anonymity. The ConnecteDNA study is set to focus on the legal regulations that currently govern the access to and storage of donor information in the UK, the Netherlands, Sweden and Victoria, Australia. Ultimately, the study aims to find solutions and make recommendations about how to keep and reveal donor information.

Dr Frith concluded 'that the fertility sector itself is now suddenly faced with a new responsibility to ensure that both gamete recipients and donors are aware of the wide-ranging possibilities of identification.'

Sources and References

• 6 July 2022. 38th annual meeting of the European Society of Human Reproduction and Embryology
  How consumer DNA testing is changing the landscape of egg and sperm donation

Reproduced from BioNews with permission, a web- and email-based source of news, information and comment on assisted reproduction and human genetics, published by Progress Educational Trust.