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, HDBI, with the support of Sciencewise, commissioned 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 perspectives as well as how near-future developments might be viewed. This foundational piece of work was the initial step towards greater meaningful public dialogue and engagement on the topic and a direction for future public consultations and research.
A total of 70 participants from across the UK took part in the dialogue. They participated in one of three ways: the pilot group, the lived experience group (with experience of developmental conditions; fertility treatment and/ or recurrent miscarriage) and broad public north and broad public south groups. 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
The report sharing the findings from this foundational public dialogue can be found here.
This project was 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.