Public dialogue on early human embryo research

Summary

The Human Developmental Biology Initiative (HDBI) and UKRI Sciencewise have co-funded a public dialogue to better understand public hopes and concerns around the regulation of research involving human embryos.  

One aspect of these regulations is the 14-day rule. This is a limit enforced by statute in the UK, introduced in 1990, which applies to early human embryos that are donated, with consent, to research because they are no longer needed, or are unsuitable, for fertility treatment or embryos that are created for research from donated sperm and eggs. It limits the amount of time early human embryos can be developed in a laboratory for scientific study to 14 days after fertilisation and states that the embryos cannot be transferred into a person’s womb. As recommended by the International Society for Stem Cell Research in their 2021 guidelines, we are beginning meaningful public engagement to understand how people feel about this rule today.  

Over the course of multiple workshops, our public dialogue aimed to provide an updated account of where public hopes, concerns and aspirations lie, to take stock and explore current perspectives as well as how near-future scientific developments might be viewed by the public. This foundational piece of work is an initial step towards wider UK public engagement on this topic and provides direction to future public consultations and research. 

To be kept up-to-date with this work, please click here to sign up to our project mailing list. 

Project overview

The Human Developmental Biology Initiative (HDBI) aims to better understand how humans develop before birth - a better understanding of human development may eventually lead to improved treatments for infertility, childhood cancers, spina bifida, heart defects and other conditions as well as to regenerative medicine. 

HDBI research involves the use of early human embryos (donated, with consent, from fertility treatment) and biological models of early embryos (created from stem cells). 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 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.  

Given this context, we have 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 foundational piece of work aims to be an initial step towards unbiased public engagement on the topic and provide direction to future public consultations and research.  

The dialogue engaged a group of people broadly reflective of the UK population, as well as those with relevant lived experience. The objectives of the dialogue were to:  

• Develop a holistic understanding of participants’ views of the societal and ethical issues around HDBI research 

• Identify participants’ views of research questions and outcomes of human developmental biology research which reflect societal priorities 

• Enable scientists and public participants to engage in a constructive dialogue to hear, reflect, consider and respond to issues around the research 

As a consequence those involved in human developmental biology research will:   

• Use this initial evidence base to inform future public engagement, policy decisions and reviews around regulations governing research on human embryos, such as the 14-day rule

• Improve the quality of scientific research in this area by ensuring it is in greater alignment with participants’ priorities 

To be kept up-to-date with this work, please click here to sign up to our project mailing list. 

This project has been commissioned by the Human Developmental Biology Initiative, with funding from Wellcome and UK Research and Innovation’s (UKRI) Sciencewise programme. It was managed by a team representing HDBI and the Babraham Institute, with support from UKRI Sciencewise, and was advised by an oversight group co-chaired by Prof Bobbie Farsides and Prof Robin Lovell-Badge. The dialogue was delivered by Hopkins Van Mil and evaluated by Ursus Consulting. The dialogue workshops took place in the summer of 2023. The report sharing the findings from this foundational public dialogue can be found here and the impact evaluation report here.