Impact Activities

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.    Preparing for contact: implementing information sharing policies in sperm and egg donor conception (SEED Trust / UoM collaboration)

Summary
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 SEED Trust, Association of Reproductive Scientists, British Infertility Counsellors Association, British Fertility Society, and the Donor Conception Network) and drawing on our research with people affected by donor conception, members of the ConnecteDNA team are creating (with the support of a graphic designer) infographics and online materials to help donors and their families prepare for the possibility of contact. The resources will be made available on a dedicated webpage. The host organisation is yet to be finally agreed, but likely to be SEED Trust. We will also evaluate the effectiveness of our resources in order to create an evidence base for ongoing support offered by the stakeholders and to share with the UK’s regulator, the Human Fertilisation and Embryology Authority (HFEA).

This collaboration is funded by small grant from The University of Manchester School of Social Sciences.

II.    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).

III.    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).

IV.    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.