All images courtesy of Cambridge Reproduction
Author: Christina Rozeik, G-SCBEM Project Manager and the Programme Manager for Cambridge Reproduction
How do you regulate a rapidly-developing area of science when it seems as if new discoveries are being published on a weekly basis? How do you balance the need for robust oversight of the research with enabling scientists the scope to make new discoveries? And – perhaps most crucially – how do you make sure that new governance considers public concerns and maintains trust in the people carrying out the research?
These are some of the questions that the Governance of Stem Cell-Based Embryo Models (G-SCBEM) project has been grappling with for the last year. And, thanks to a very timely opportunity to carry out a public dialogue on this topic, we have been able to put these same questions to a group of public participants.
New governance for a new area of science
Stem cell-based embryo models are one of the most exciting scientific advances of the last 10 years. These three-dimensional structures model aspects of embryo development, and may help us to understand some of the problems that can affect early pregnancies and lead to miscarriage or birth defects.
Their resemblance to human embryos raises questions about whether or how their use should be regulated. Because this is such a new area of research, there is currently no dedicated governance that sets out where its ethical, responsible and legal boundaries lie. The G-SCBEM working group has been addressing this “governance gap” by developing the first Code of Practice specifically for UK embryo model research.
The working group has already consulted widely, speaking to scientists, legal experts, ethicists, regulators and funders about how to develop robust governance that is proportionate, transparent and flexible. They have shared a first draft of the Code of Practice for feedback to these expert stakeholders and received many very detailed comments and suggestions. But we felt that an important piece of the puzzle was missing: we needed to ensure that public voices were included among all of the other voices that are traditionally heard during a project like this. The public dialogue format, which allows space for reflection and deliberation, was an ideal way to ensure that public views are embedded in the Code of Practice right from the start.
Trust and transparency: the foundations of good governance …. and a good dialogue
From its outset, our public dialogue was ambitious in scope. Not only were we asking the participants to consider some really challenging questions, but we were carrying out this process more rapidly than usual, to ensure that the findings could inform the Code of Practice before it is published later this year.
Throughout the dialogue workshops, participants grappled with some really big questions: Where does life begin? When does an embryo model become so sophisticated that it should be considered as equivalent to a human embryo? How can we regulate something when we don’t yet know what its full potential is? Can an embryo model be a good representation of a human embryo when it differs in some crucial ways?
I was deeply impressed by the thoughtfulness and nuance that the dialogue participants brought to these discussions. Even where opinions differed – and there was a wide range of views expressed during the dialogue! – the discussions remained respectful and open-minded.
All images courtesy of Cambridge Reproduction
So, the dialogue is finished: now what?
This public dialogue is just the start of an ongoing conversation about embryo models in research. The G-SCBEM working group is currently updating the Code of Practice to take account of feedback from stakeholders – including from the participants in the public dialogue.
In the longer term, we really want to continue the wider conversations about this exciting area of research that have been kicked off by the public dialogue. Cambridge Reproduction ran two public events around embryo models last month, at the Science Museum in London and at the Cambridge Festival. The Cambridge event included a specially-designed exhibition about embryo models and an opportunity to talk directly with scientists who use these models in their research. The conversations at that event were very lively, and reflected many of the broad themes that are reflected in the public dialogue: excitement about the possibilities of this research, a desire to see the benefits shared equitably, and a concern that the research is overseen responsibly and transparently.
The public dialogue has given us a way to explore these themes in a deeper, more nuanced way, and will be invaluable when we plan further public engagement around embryo models. By understanding public hopes, concerns and sensitivities better, we can design engagement that addresses these views more directly, that asks the right questions and that listens to the answers more closely.
A steep learning curve… but the view from the top was worth it!
The process of public dialogue was completely new to me, although I have had a lot of experience of public engagement during my career. The first thing I had to learn was to trust the process and resist the temptation to try and “steer” the outcome. I quickly learnt that, although a huge amount of detailed planning goes into a public dialogue, the process takes on a life of its own once the discussions are underway! I was lucky that our dialogue was supported by a very experienced team – not just Hopkins Van Mil (dialogue delivery) and Ursus (independent evaluation) as consultants, but also Sciencewise as advisor and mentor. They helped us find the balance between “too much” and “too little” when specifying our aims for the dialogue, designing stimulus materials, providing information to participants and core questions. We also benefited from an Oversight Group that provided robust challenge to our plans and reminded us to think about the woods when we were getting too focused on the trees.
I came to appreciate that public dialogue is not an opinion survey, and that it is not a way to get easy “answers” to our questions. The dialogue report is long and nuanced, and the reflections captured cannot easily be directly imported into a Code of Practice. The report identifies areas of tension, where participants were split between two or more views. In other areas, the public participants expressed views that differed from other stakeholders that we have consulted, or they weighted key considerations very differently. The G-SCBEM working group now has the tricky job of trying to balance these various perspectives, ensuring they are all considered and respected while keeping the Code of Practice workable, relevant and effective.
Taking part in this public dialogue has been an intense and sometimes challenging experience, but also a rewarding and enriching one! I’m hugely grateful to the participants, who engaged in some really knotty discussions so whole-heartedly. I hope that when the Code of Practice is published, they feel proud of the contribution that they have made to developing governance for this new and complex area of research.
Christina Rozeik is the G-SCBEM Project Manager and the Programme Manager for Cambridge Reproduction, which is leading the G-SCBEM project in partnership with the Progress Educational Trust.
Find out more
You can find out more about the dialogue on the project page
You can read the full dialogue report here
