REF 2021: Managing Knowledge of Genetic Relatedness in Donor Conception

What kind of information should donor-conceived people be able to find out about their donor and donor-conceived siblings?

In the last 20 years, there has been a huge shift in attitudes, regulation and professional practice in gamete (egg and sperm) and embryo donation, from anonymous donors and secrecy, to greater openness and information sharing amongst all parties. Work undertaken by Dr Lucy Frith and Professor Eric Blyth (and others) has contributed to this change.

The Challenge

The use of techniques such as in vitro fertilisation (IVF) and using donated gametes (eggs and sperm) and embryos to have children is growing. One of the perennial ethical and social questions raised by gamete and embryo donation is what should donor-conceived people be able to find out about their donor and donor-conceived siblings (other people conceived from the same donor)?

The attitudes to and regulation of donor conception has changed significantly in the last 20 years. Historically, donor insemination was shrouded in secrecy. Donors were anonymous to recipients of their donation and to any offspring produced. Accepted practice was for recipients to keep secret the fact of donor conception from both the child and members of their social circle.  In the early 2000s donor anonymity became increasingly questioned and the research team’s work was part of this debate, that foregrounded the child’s right to know identifying information about their donor and the importance of being told they were donor conceived. The law was changed in 2005, and the minister responsible argued that the decision was taken on the grounds that the interests of the child are paramount.

Research Action

The team have conducted research on what type of information donor-conceived people should be able to find out about their gamete or embryo donor and any donor-siblings (other people conceived from the same donor) they may have. They have also looked at how families who have used donor conception talk about it and what they think about telling their child that they are donor-conceived.

Their studies on donor-conceived adults’ experiences concluded that there are good ethical arguments for openness in families about donor-conceived origins. An important area is how professionals approach the counselling of potential donor conception parents and the research carried out by the team has been used in guidance on good practice in disclosure to offspring that they are donor conceived.

Working in partnerships

The team have worked with academics across the UK and internationally, policy makers, patient groups, Donor Conceived Registrants, and professional organisations such as, The Project Group on Assisted Reproduction British Association of Social Workers and European Society of Human Reproduction and Embryology.

Outputs and outcomes

Since the change in the law in the UK, debates have now moved on to consider the issues around telling children they were donor-conceived and how access to information about donors and donor-siblings is managed, and the team’s work in this area has been influential both in the UK and internationally. It has been cited by professional guidelines (The American Society of Reproductive Medicine and the British Infertility Counselling Association) and used by organisations such as the Donor Conception Network and the Canadian Fertility and Andrology Society in their online guidance. It has also been used by legislatures, such as the state of Victoria in Australia, when considering policy changes towards more openness in donor conception.