Off Grid Donor Identity Disclosure: What happens when people trace their egg/sperm/embryo donor through social media or genetic testing?

The Project

This project explores the experiences of those who are affected by tracing donors/donor relatives via social media or genetic testing. The aim of this project is to examine the views, concerns and experiences of individuals who find themselves affected by tracing biological donors through social media or genetic testing, either as a donor conceived person, their parents, or as a donor. It will generate an archive of in-depth research interviews, visual images produced by participants, and a website which showcases them (as well as academic publications and a research report). The project builds on research about fertility, assisted reproduction and alternative families. Legal frameworks prohibit seeking donor identifying information until a donor conceived person reaches the age of eighteen (and deny access to donor information to those conceived prior to 2005). Nonetheless, increasingly donor conceived people, or their parents, are attempting to access information about their own or their children’s biological roots either through social media sites or genetic testing. Using interviews, this project will investigate the experiences of those who are affected by this form of donor identity disclosure, experiences which are rarely heard in the public sphere.

Interviews

The project will involve a qualitative study using interviews. Twenty individuals who self identify as being affected by donor identity disclosure through either genetic testing or social media, will be recruited to take part in individual interviews exploring their experiences.

Participants have the option to take part in a regular interview, where the researcher has a list of questions. Alternatively, they may prefer to take part in a ‘photovoice’ interview. Photovoice methodology is where participants are invited to produce images (photography or drawing) that represent or are symbolic of their experiences. These images are then used as prompts for generating personal narratives in an interview. The interviews will cover a range of topics in relation to donor conception, including the experience of searching for a donor and post donor identification contact.

Recruiting Information

Do you have experience with donor tracing via social media or genetic testing? Are you interested in sharing your story with us?

We are currently recruiting participants to take part in individual interviews to share their experiences. If you volunteer to participate, you will be asked to take part in either a standard interview where the researcher has a list of questions. Alternatively, you may opt to do a photovoice interview, where you are asked to take photographs (or make drawings or produce other images) of things that represent what your thoughts, feelings and experiences of tracing donors via social media or genetic testing. If the latter, you will bring these images to the interview, during which we will use these photographs/images to help us talk about your experiences and thoughts.

Interviews will last approximately one hour and be fully anonymized. All interviews will be audio recorded and transcribed, forming the base of the data for this project.

If you are a donor, donor-conceived person or their parent and have a story to tell about finding relatives via social media or genetic testing, get in touch with the project team - details below.

An example of a similar research project that used photovoice interviews can be found here.

Funding

The project is funded by a British Academy/Leverhulme Small Research Grant.

Publications

Ryan-Flood, R., (2023) ‘Whose Consent: Donor conception, anonymity and rights’, in Ryan-Flood, R., & Hawkins, L. (Eds.) (2023) Consent: Gender, Agency and Power. London: Routledge. Available at: Consent: Gender, Power and Subjectivity - 1st Edition - Laurie James-H.

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