Direct-to-consumer genetic testing and the changing landscape of gamete donor conception: key issues for practitioners and stakeholders.

RESEARCH QUESTION: What effect does direct-to-consumer genetic testing (DTCGT) have on information finding and sharing in relation to gamete donor conception? DESIGN: This study used in-depth qualitative interviews with parents through donor conception, donors, the relatives of donors and donor-conceived people who have used, or considered using, DTCGT. Interviews were conducted between September 2021 and February 2023. Sixty people defined themselves as having been affected by donor conception and DTCGT. Fifty-seven of these were resident in the UK at the time of interview. The final sample included 19 (spermatozoa, egg or embryo) donors, 25 donor-conceived people, 20 parents through donor conception and two relatives of donors. Five participants occupied more than one of these roles. RESULTS: The rise of DTCGT is affecting how information about donor conception is managed: it shifts patterns of knowledge about donor conception; increases flexibility regarding the age of access to information about donor relatives; can lead to a growing role for non-professionals, including wider family members, in gatekeeping information about donor conception; accentuates the effect of donor conception for donors' and the relatives of donor-conceived people; and shapes, and is shaped, by the formal regulatory donor information management systems. CONCLUSION: Fertility professionals should inform people using, or considering, donor conception, or (potential) donors, about the different ways DTCGT can affect sharing information about donor conception. Support is needed for those affected by these changes.

Toxic money or paid altruism: the meaning of payments for identity-release gamete donors.

Public discourses commonly frame gamete, organ and other forms of bodily donation as altruistic 'gifts'. However, despite on-going debates about the ethics of payments to donors, few studies have examined the views of donors themselves regarding the meaning of payments and their compatibility (or not) with understandings of these practices as gifts. This article addresses this issue, analysing 24 in-depth interviews with UK identity-release gamete donors. It was crucial to all participants that their donation be viewed as fundamentally other-oriented, motivated by the desire to help others. However, whilst egg donors often accommodated payment within this narrative, male participants explained that any money would taint the gift they had given. I argue that sperm donors faced particular challenges to incorporating payment within a gift narrative for two key reasons: first, sperm donors relied on a discourse of 'pure altruism', including absolute opposition between gifts and market exchange, in order to present their donation as other-oriented. In contrast, egg donors were also able to mobilise a discourse of relational giving to present their donations as a personal gift. Second, according to a continued stereotype of sperm donors as financially motivated students, their payments have already been culturally earmarked as side-line earnings.

Implantable Smart Technologies (IST): Defining the 'Sting' in Data and Device.

In a world surrounded by smart objects from sensors to automated medical devices, the ubiquity of 'smart' seems matched only by its lack of clarity. In this article, we use our discussions with expert stakeholders working in areas of implantable medical devices such as cochlear implants, implantable cardiac defibrillators, deep brain stimulators and in vivo biosensors to interrogate the difference facets of smart in 'implantable smart technologies', considering also whether regulation needs to respond to the autonomy that such artefacts carry within them. We discover that when smart technology is deconstructed it is a slippery and multi-layered concept. A device's ability to sense and transmit data and automate medicine can be associated with the 'sting' of autonomy being disassociated from human control as well as affecting individual, group, and social environments.

The case for reframing known donation.

Contemporary UK egg and sperm donation exists in two predominant forms: (i) clinic-based, identity-release donation; and (ii) known donation, which can take place either inside or outside of the clinic context. Regulatory and clinical discussions of the latter currently focus, almost exclusively, on risk whereas identity-release is widely presented as the default route for both donors and recipients. Consequently, there is little support available for those potential donors and recipient parents who might prefer a known donor arrangement. In this commentary, we reflect on our sociological research with donors and parents through donor conception and argue that there are a number of reasons why known donation may, in some contexts, offer advantages over identity-release donation. Whilst this research also demonstrates that there can be challenges involved in known donation, these are not inevitable nor are challenges absent from identity-release routes. It is timely and important to question whether the current de-valuing of known donation compared with identity-release donation holds up to academic scrutiny. We argue for a more balanced approach in which the benefits and challenges of both known and identity-release routes are discussed with donors and recipients and for increased support for known donation in clinics and by regulatory bodies.

New risks inadequately managed: the case of smart implants and medical device regulation.

Many emerging technologies are associated with 'risk'. While the concept of risk is protean, it is usually conceived of as the potential of something damaging or harmful happening. Thus, risks are a primary target of many regulatory regimes. In this article, after articulating an understanding of risk, we assess the European medical devices regulatory regime from a risk perspective, focusing on its handling of 'smart' implantable medical devices. In doing so, we discuss the empirical evidence obtained from expert participants in the Implantable Smart Technologies Project, which evidence is framed around three risk typologies: materiality, geography and modality. We conclude that none of these risks are sufficiently addressed within the existing regime, which falls down not just from a standards perspective, but also from the perspective of transparency and balance.