03 May 2016
Joyce Harper is Professor of Human Genetics and Embryology at University College London; Debbie Kennett is an honorary research associate in the Department of Genetics, Evolution and Environment at University College London; Dan Reisel is a research associate at the Institute for Women's Health, University College LondonAppeared in BioNews 849
A significant proportion of fertility treatment is 'third-party reproduction' – i.e. it involves the use of donor gametes or embryos. Sperm donation has of course been practised for decades, as there is no need for a clinic to be involved, but egg donation does require a fertility clinic to perform the egg collection. Before regulation and accurate records, there were many donor-conceived people who could not find any information about their donor. Hopefully, all clinics now keep accurate records of which donor egg or sperm was used, but in the majority of countries donation remains anonymous.
Anonymous egg and sperm donation means that thousands of people have been unable to discover the identity of their genetic parent. In some cases, children are not even told how they were conceived, which could result in this information being exposed in later life.
In both the UK and USA there are donor registries to which donors and donor-conceived people can add their genetic information. The Donor Sibling Registry in the US provides a safe space for donors to connect with their offspring and for donor-conceived people to search for their half-siblings and donors. In the UK, results from DNA analysis are shared on the Donor Conceived Register, and donors are encouraged to add their DNA to this database. Many people have found half-siblings and their donor using this method, and the parents of donor-conceived children are also using these databases to search for their child's donor siblings.
As we report in a recent article in the journal Human Reproduction, there is a general increase in the number of people using direct-to-consumer genetic tests, which are often used by people who wish to trace their family tree. Autosomal DNA tests offered by 23andMe, AncestryDNA and Family Tree DNA include a 'relative-finding feature' that matches people with their genetic relatives based on the amount of DNA shared. With falling prices, the databases have grown rapidly, and over three million people have already been tested.
We are concerned that people using these ancestry databases to trace their family tree may accidentally discover unknown genetic lineages resulting from fertility treatment.
A sperm or egg donor does not even have to be in the genetic database to be identified because identification is possible if there is a match with a close relative – even a first, second or third cousin. Anyone who has donated, or is about to donate, eggs and sperm needs to understand that they could be traced by their donor-conceived children even if they have donated anonymously. And, if the donors' family members have not been told about the donation, they might inadvertently learn of the secret.
What if parents who had used donor eggs or sperm had never told their children that they were donor-conceived? There is a now a very real possibility that their children could find this out through personal genetic testing, which could potentially lead to a traumatic breakdown of trust with their parents.
Parents contemplating using a donor to conceive must be informed that genetic testing in the future will increase the likelihood of their children finding genetic relatives, and that the absence of disclosure can have negative implications. Parents should therefore be encouraged to disclose the use of donor eggs and sperm to their children. If this is done early on in the child's life, there is every likelihood that it will not be perceived as traumatic for the child.
These concerns make urgent a wide-ranging societal conversation about how to best safeguard and promote the interests of donor-conceived offspring while protecting the rights of donors.There is a need to ensure that new genetic information is communicated in a way that promotes both the safety and privacy of the offspring and the donors. Fertility clinics should also develop their own guidelines and procedures to enable them to integrate subsequent genomic data into their existing consent agreements. But the reality that all parties concerned must be made aware of is that, in 2016, donor anonymity simply no longer exists.