We hope that our ConnecteDNA research findings will support and influence change and, in so doing, improve the lives of people impacted by donor conception and direct-to-consumer genetic testing. Alongside our ConnecteDNA research activities (see our News page for updates) the team is working with other researchers, charities, regulators and policy-makers to create impact from our research findings.
I. Engagement for the APPG on Health
In June and July, 2023, Lucy Frith and Caroline Redhead, working with Policy@Manchester, had two online meetings with members of the APPG on Health to discuss a ConnectedNA policy brief relating to the implications of technology on gamete donor anonymity. Focusing on two key issues for participants in our qualitative study, our recommendations suggested reform of the legal framework governing the access by donor-conceived people to information about their donor, and an increase in mechanisms of support for donor-conceived people finding out unexpectedly about the circumstances of their conception. Having spoken to Baroness Finlay (June 2023) and Peter Dowd, MP (July, 2023), we hope to continue to work with Policy@Manchester and Peter Dowd to bring our recommendations to the attention of the Government.
II. Preparing for contact: implementing information sharing policies in sperm and egg donor conception (SEED Trust / UoM collaboration)
As a result of law reform in 2005, donor conceived people are now able, at age 18, to access identifying information about their donor. The first cohort of donor conceived people born since this legal change come of age in 2023. In addition, the growth of direct-to-consumer genetic testing, in conjunction with social media, is enabling people related through donor conception to identify and contact one another, outside of ‘official’ routes. In conjunction with stakeholders, we have identified a lack of support for donors and their families in relation to contact.
Working with an established team (including representatives from the Association of Reproductive & Clinical Scientists, the British Infertility Counsellors Association, the British Fertility Society, the SEED Trust, the Donor Conception Network, the Donor Conceived Register and Donor Conceived UK) and drawing on our research with people affected by donor conception, members of the ConnecteDNA team, (with the support of a graphic designer) have led the design and creation of a series of leaflets to help donors and their families prepare for the possibility of contact. The leaflets are available on the ‘Preparing for Contact’ page of this website
The development of this resource was funded by an UKRI ESRC Impact Accelerator Award (University of Manchester).
III. Engagement with Donor Conception Network (DCN)
We are working with representatives of the DCN in various ongoing collaborations, including:
• The SEED Trust ‘Preparing for contact’ collaboration (see A above);
• Marilyn Crawshaw’s ‘research review’ presentation to DCN workshop facilitators included the key challenges identified from ConnecteDNA interview data (January 2023)
• Presentation to the DCN 2023 Spring Conference (LF) (See the News page); and
• Research exchange with Yaël Ilan-Clarke, DCN’s Research Co-ordinator (ongoing). Yaël attended the stakeholder workshop in London (November, 2022) and the ConnecteDNA’s recent team workshop in Manchester (March, 2023).
IV. Engagement with Donor Sibling Connections UK
Early stage engagement with an online community developing proposals for the amendment/removal of current age restrictions for accessing the Donor Sibling Link (included as a recommendation in our consultation response).
V. Preparation of information and guidance for parents on how to support their teenage or adult donor conceived children if they are considering searching for genetic relatives, actively searching or negotiating contact with them.
Early stage engagement with a researcher compiling this short guide on behalf of the DC Network. Noting that both the HFEA and the ISOGG guides concentrate on advice for donor conceived adults and donors, the researcher has found nothing directed at parents who want to be able to support their children, but who may know little about the subject and who might well have mixed and uncomfortable feelings themselves about it.
Our ConnecteDNA research findings will help inform and support the preparation of the guide. This research will also support our work on / interest in age-related access to information across the sociological and legal streams of the ConnecteDNA project.