Translating emerging technologies for health: Ethical and legal consideration
27 Sep 2023
Join us on Tuesday, 3 October at 2pm
In this seminar, researchers from the Centre for Social Ethics and Policy (CSEP) give three short presentations on research with implications for translating technologies to health benefits. After the presentations there will be time for questions and discussion with tea and biscuits.
Addressing Regulatory Gaps and Uncertainties for New and Emerging Biotechnologies: The Case of Embryo Models
Jonathan Lewis and Søren Holm
We address the regulation of organoid research, specifically, the regulation of research involving embryo models, blastoids, and gastruloids, to shed light on the types of problems that emerge when new biotechnologies test the boundaries of frameworks designed to regulate biomedical research. Firstly, we outline the principal gaps and uncertainties to which embryo models give rise, including the conceptual, epistemological, and regulatory uncertainties that underline the question of whether and to what extent it is permissible to conduct certain types of research with these models. We go on to argue that even when we can't definitively address the conceptual and epistemological uncertainties, this doesn't mean that we cannot seek to fill the regulatory gaps, for instance, by means of collaborative process incorporating domain-specific knowledge and expertise.
The GP Data Trust Project: Empowering Patients and Engendering Trust in Health Data Sharing
Catherine Bowden and Sarah Devaney
In May 2021, NHS Digital announced that they would collect patients’ primary care (GP) data so that it could be used in a non-identifying form in medical research and planning. Over a million people opted out of sharing their GP data, prompting NHS Digital to pause the programme to provide more time to speak with people about their concerns. In the first phase of our GP Data Trust pilot project we conducted interviews, surveys, and focus groups with patients and stakeholders to find out why people opted out of sharing their GP data and to explore whether a Data Trust could provide a method of sharing their GP data that would be more acceptable to them. Our data has revealed that patients opted out because they did not trust that their data would be handled appropriately, in line with their values and aims. At the heart of this distrust is a perceived misunderstanding of the relationship that patients have with their data. Understanding what patients mean when they say it is ‘my data’ is crucial to providing them with the control they want to have over their health data, rebuilding trust, and enabling them to contribute their data to health research in line with their wishes. In this brief presentation we will discuss the context and findings of the first phase of our research, and set out the plans and challenges for its second, proof of concept, stage, which we are developing in conjunction with the Greater Manchester Care Record.
Direct to consumer genetic testing (DTCGT) and gamete donor testing: ethical and social issues
Lucy Frith
This talk will look at the use by those DTCGT is changing how information about donor conception is accessed and managed by parents, donors and donor conceived people. Following the development and rapid expansion of DTCGT, there have been claims that ‘anonymity is dead’ in relation to donor conception. Small-scale studies and media articles have reported that donor conceived adults are often finding out about the circumstances of their conception after using DCTGT. However, there is a gap in the evidence about how donor conceived people already aware of their donor conception, as well as parents through donor conception and donors, are using DTCGT. The ConnecteDNA project is an ongoing qualitative research study (March 2021-February 2024). It investigates how people in the UK, involved in donor conception, are impacted by DTCGT and considers the implications for policy and practice. This presentation focusses on phase two of the project: in-depth interviews with parents through donor conception, donors and donor conceived adults who have used, or considered using, DTCGT.