Author: Dr Michael Norman, Public Engagement Manager / Public Dialogue Co-Coordinator, Babraham Institute / Human Developmental Biology Initiative. Mike co-ordinated the public dialogue on early human embryo research commissioned by HDBI and supported by Sciencewise.
‘What will the research show?’ This was a question asked by many of our public participants who wanted to weigh up the pros and cons before deciding how they felt about research involving the use of early human embryos and if they thought the regulations that govern the research should change. Of course, as is the way with most future-looking fundamental research, the specialists involved in the dialogue could not really answer this. The nature of generating knowledge, that can then be built on and translated into application-based research, means there are many unknowns and unexpected discoveries are likely to occur through the course of research. It is because of this that engaging the public in dialogue around fundamental research is so important. It truly is a chance for public voices to shape how research is carried out and direct focus into applications that matter to society.
Deciding the right moment to include the public in fundamental research can be tricky. Too early and people can struggle to appreciate the potential future impact on their lives. Too late and research could already be moving in a direction that the public haven’t had the opportunity to see the value in. For our public dialogue project, ethical and regulatory need helped guide this decision.
In the UK, research with early human embryos is regulated through the Human Fertilisation and Embryology (HFE) Act, which prohibits the culturing of embryos for research beyond 14-days after fertilisation (the so-called 14-day rule), which was introduced in 1990.
There have recently been moves in the research community to consider updating these regulations, with the International Society for Stem Cell Research publishing revised guidelines in 2021 recommending meaningful public engagement around the topic to inform any potential regulatory changes, and the Human Fertilisation and Embryology Authority (the regulator for this type of research) carrying out a consultation around the HFE Act in spring 2023. Other countries are also beginning to consider how their regulations on this research may change going forward. At the same time there have been advances in science and technology which have led to culturing embryos beyond this long-established limit becoming a real possibility especially in regions where this work is not prohibited in law.
A big question for those working in the field is ‘what do the public think about this and why do they think it?’. Given this context, we —Human Developmental Biology Initiative – conducted a public dialogue project to provide an updated source of information on where public hopes, concerns and aspirations lie. Over the course of multiple workshops, diverse groups of citizens engaged with the topic and deliberated with scientists, ethicists, stakeholders and policy makers to explore current perspectives as well as how near-future developments might be viewed.
This dialogue was very much a foundational piece of work that helped highlight a range of areas for future projects to explore more fully. Some of the key messages from members of the public were:
- Support for improved fertility and health outcomes: The strongest hopes for future human embryo research were where new knowledge would deliver improvements in understanding miscarriage, preventing health conditions such as spina bifida and raising the success rates of IVF procedures.
- Appetite for review of the 14-day rule: Participants recognised that extending the 14-day rule could open up ways to achieve benefits in fertility and health, with participant support for reviewing this, including national discussion.
- Confidence in regulation: There was a high level of confidence in how human embryo research is regulated, despite a low level of awareness of the regulators and statutes themselves. This included strong desire to see robust regulation governing any changes to the 14-day rule and further regulation for the use of stem cell-based embryo models.
- Concerns about genetically engineering humans: The public expressed concerns on the application of developments in this field to genetically alter or engineer humans.
More generally, what really came through was the need, and desire, for more clear and transparent communications about the research being done in this area and others of fundamental research. Not to win support for any particular change of regulations or research focus but to provide better resources to empower more people to have meaningful conversations on the topics going forward. It’s only by engaging people with fundamental research that we, as a society, can truly shape UK research in way that meets our expectations and enriches the outcomes for all.
Public Participant (Broad public group, south) said: “I do think that an extension of this public dialogue, and educating a wider society has a benefit in itself. This is really complex and sensitive and the wider you talk about it before decisions are made, the better.”
This public dialogue provided HDBI and researchers in the field with a rich insight and touchstone into the hopes and concerns of participants giving the real opportunity to reflect on this for their future research directions.
Find out more
You can find out more about the dialogue and the findings, read the Public Dialogue report here.
You can hear both researchers and participants talk about their experiences of the dialogue in action, have a watch of this short film of the process.
You can read more about what it was like to take part as a specialist, read Amy Wilkinson’s blog here.