Submitted by Christina Rozeik on Wed, 10/04/2024 - 15:18
A groundbreaking public dialogue on stem cell-based embryo models (SCBEMs) has been published today, comprising the first in-depth exploration of public attitudes towards research involving embryo models in the UK. The dialogue findings will inform development of a new Code of Practice for embryo model research, which will be published in Spring 2024. The dialogue report also suggests considerations for research and governance, including recommendations for greater public involvement and engagement with this research.
SCBEMs cover a range of three-dimensional structures that can model some aspects of early embryo development. By providing insight into critical stages of early development, they also offer exciting potential for understanding some of the problems that can affect early pregnancies and lead to miscarriage or birth defects. As the science is so new, however, there is currently no dedicated governance for their use in research – a “governance gap” that hinders research and risks damaging public confidence.
Cambridge Reproduction, in partnership with the Progress Educational Trust (PET), has been leading a project to break this deadlock by developing the first Code of Practice for UK research involving embryo models. The public dialogue was commissioned to ensure that public voices – as well as those of researchers and policy makers – were taken into account while the Code of Practice was being written. “Throughout the process of developing the Code of Practice, we have been keen to engage with as wide a range of stakeholders as possible,” said Christina Rozeik, Programme Manager for Cambridge Reproduction. “We’re delighted that we’ve been given the opportunity to carry out this public dialogue, as it has allowed us to listen to wider public views, as well as those of researchers, policy makers and funders. By giving us a better understanding of public hopes, concerns and sensitivities around embryo models, the dialogue findings will help to ensure that our Code of Practice is as robust, transparent and trustworthy as possible.”
Public dialogue is a deliberative process that brings together members of the public with scientists, stakeholders and policy makers to consider issues relevant to future policy decisions. During the SCBEM dialogue, a diverse group of 38 people broadly reflective of the UK population were engaged in nine hours of focused activities, including a series of online workshops with scientists, legal experts and ethicists. Participants explored a number of issues relating to embryo models, including how they are similar to or different from human embryos, their use in research, and the different ways that such research could be governed, including voluntary and legislative approaches.
Discussions during the dialogue identified several areas of tension, including whether governance should be voluntary or legislative, and the degree to which embryo models should be viewed as equivalent to human embryos. Participants were excited by the potential offered by this research, including improvements in IVF success, better understanding of congenital conditions and advancing understanding of early human development.
Most participants felt that embryo models are different enough from human embryos that they do not pose the same moral concerns, and that research governance should be addressed differently. Many were surprised to hear that there is no dedicated governance already in place for research involving embryo models, and they were supportive of the new Code of Practice currently in development. The dialogue report identified five considerations that participants would like the authors of the draft Code of Practice to be mindful of:
- Time or developmental limits on embryo model research: Almost all participants wish to see some limits placed on embryo model research, including clear guidance on when that research should stop. However, they are aware that differences in the way embryo models are formed and develop mean that the ’14-day rule’ limiting human embryo research cannot be applied easily to embryo models. Many participants wish to see a “case-by-case” approach for governance, that takes into account the wide variety of embryo models currently in use in research.
- Code of Practice as a stepping stone to legislation: Participants see the merits of a Code of Practice that fills a current governance gap very rapidly and is flexible enough to enable frequent updates. But many feel that, in the longer term, embryo model research should be addressed by legislation.
- Regular reviews of the science and governance: The rapid progress of embryo model research in recent years makes regular reviews of governance vital for participants.
- Public involvement in governance and greater public awareness of the science: Participants believe that greater public involvement in, and awareness of, research and its governance will be essential to earning public trust in embryo model research.
- Research benefits clearly described and shared: Participants hope to see benefits from this research, such as improved IVF techniques and new treatments for health conditions, made available to all and not just those who can afford them.
“It is an ideal time to find out what the general public has to say about this fast-moving area of research," said Sandy Starr, Deputy Director of PET. "It has been 40 years since the publication of the Warnock Report, and the pioneering work of Mary Warnock and Anne McLaren exploring the ethics and explaining the science of human embryo research, while taking account of public perspectives. Researchers are now able to create intricate multicellular structures from stem cells, that resemble human embryos in certain respects while differing from human embryos in other respects. The public must be involved in discussions of how best to think about and govern such research. The new public dialogue report represents a first step in a vital conversation that must now be ongoing.”
The SCBEM public dialogue was commissioned by Cambridge Reproduction and UK Research & Innovation (UKRI) Sciencewise programme, and held in January 2024. The dialogue was delivered by Hopkins Van Mil and evaluated by Ursus Consulting. Other project partners included PET, Hull York Medical School, and the Human Developmental Biology Initiative (HDBI), which commissioned a public dialogue on early human embryo research last year. The work was co-funded by UKRI Sciencewise and the Biotechnology and Biological Sciences Research Council (BBSRC).
“I’m really pleased that UKRI’s Sciencewise programme supported this public dialogue on stem cell-based embryo models so that public views can inform the code of practice in this fast-paced area of research,” said Tom Saunders, Head of Public Engagement at UK Research & Innovation (UKRI). “It is so important that upstream research and developing at pace takes the time to clearly hear and understand the hopes and concerns of public dialogue participants. Once again dialogue participants have shown they are able to grapple with the most complex, cutting edge science and give clear messages to help shape the way forwards.”
The full public dialogue report can be found on the Sciencewise website. Further information about the Governance of Stem Cell-Based Embryo Models (G-SCBEM) project, which is developing a new Code of Practice for UK research involving embryo models, is on the Cambridge Reproduction website.