Direct-to-Consumer DNA Testing for Digital and Reproductive Justice: Lived Experience of Donor Conception

Reproductive health is increasingly influenced, governed, quantified and visualised by digital technologies. Digital technologies allow individuals direct access to information about and autonomy over their reproductive health. For those who conceive through (or are created by) donor conception (a form of assisted reproduction), one such technology is direct-to-consumer DNA testing, a digital technology that can provide information about health and family. Our study focused on understanding the experiences of those who used DNA testing to access information about family members (N=23). In this presentation, we draw on semi-structured interviews with participants involved in donor conception: gamete or embryo donors, recipient parents and donor-conceived people (n=14). Conceptualising individuals’ accounts through the dual lenses of reproductive justice and digital justice, our reflexive thematic analysis derived three themes: 1) interacting with the fertility clinic: expectation versus reality; 2) from private troubles to collective issues with the ART industry; and 3) DNA testing as technology of hope. More broadly, we illustrate how failure in regulating assisted reproduction by the ART industry and governments has given rise to DNA testing as a pathway to securing information about health and family. However, despite this positioning of DNA testing as a means for pursuing reproductive justice, our analysis also revealed its limited capacity to substitute governance, and rectify and prevent systemic injustices, raising questions as to whether what may be an individual, and perhaps temporary solution, can truly constitute justice. This research contributes to understanding the situated experiences and meanings attributed to justice for those involved in donor conception and raises important questions about ethical and privacy concerns surrounding health data and the complex intricacies of self, family and technology.