Samantha Stephen is an ESRC funded PhD student with King’s College London who is researching reproductive technologies with a focus on gestative technologies, specifically the artificial womb (find out more below!). Her research looks at social response in the UK to emerging reproductive technologies, in this case the artificial womb, understanding that such research could directly impact legislation and implementation of these technologies in the future.

Why do this research in the first place?

This project will be based on a full range of social responses to this technology from the experts involved in its design and implementation and those who may use it. The data and analysis produced through the research will be available and able to inform future UK based enquiries into legislation and policy on how artificial womb technology may be used, who can access it, when and how. She also wants to centre and start from within the MRKH community by both having a lived experience of MRKH herself and working with other community members to shape and inform the research design of the project. In this way the research is shaped by community members and for the community.

The research focused on those with Uterine Factor Infertility (including MRKH syndrome) for two reasons:

  1. Women and individuals with UFI are named as the primary beneficiaries throughout research on gestative technologies.
  2. There is little research where individuals with UFI are actually talked to about their experience with gestation and infertility, existing reproductive healthcare and what they might look for in potential reproductive technologies.

How to get involved

The project has two stages:

  1. Interviews with MRKH community members living in the UK on their experience of MRKH and ideas on gestation and ectogestation.
  2. Knowledge cafes where we come together to discuss and creatively imagine a future with ectogestation together.

Interviews will take roughly 60 minutes, and you will receive the questions in advance. For the interviews you will only be talking to Sam. For those interested to learn more then you will receive Participant Information Sheets which will give more details on the interviews, what will happen to your data, how the research team keep it anonymous and secure and how you can withdraw from the project if you do not wish to continue.

If you decide to proceed, Sam will send you the questions she plans to ask and if you would like the images which will be used. The questions were written by Sam and then refined with a smaller group of MRKH community members to make sure they meet our wider needs as a community in this context.

The research team will continue to keep the MRKH community updated through MRKH Connect (and you are free to reach out to Sam directly), information on the future knowledge cafes will also come through our pages and socials.

If you are interested in taking part in the research, please contact Sam via email: samantha.stephen@kcl.ac.uk

About Sam: “Hi, I am Sam! I am a PhD researcher at King’s College London and Associate Lecturer at the University of the West of England in Bristol. My passion is Sociology and more specifically understanding our changing relationships as humans to technology and the body. I also have MRKH and was diagnosed at the age of 15 in the state of Kansas (USA) when my family was living there for a short time. My journey with MRKH is therefore a little different culturally and so it has been such a benefit to work with MRKH connect in a UK context. My diagnosis was 19 years ago now and so much has changed in terms of community support and technology. Working and designing a project like this where I am a co-member of the sample group and the researcher is such a unique position and a privilege. If you have any questions about the project or beyond, please feel free to email me!”

Ectogestation (or ‘Artificial Wombs’), what are they and why does it matter?

Ectogestation is the gestation of human beings, outside of the human body, in a machine. This technology is often referred to as an ‘Artificial Womb’ and it may therefore be clear why this might be interesting to those of us with MRKH. New research into partial ectogestation, a technology used to increased health outcomes for extremely premature infants (EPI), has generated increased media coverage on the Artificial Womb and speculation on what it might look like for gestation to happen completely outside of the body.

Artificial Wombs could become a way of life in the future, but so often we don’t hear the thoughts or perspectives of those for whom these technologies may benefit. Instead, news coverage or new research discusses the medical indications for Artificial Wombs as people with infertility and sometimes more specifically UFI (Uterine Factor Infertility). This research is more focused on who we are talking with and not just about.

Calls for research on social responses to Artificial Wombs are growing in the academic community. This is in anticipation of public consultation through committees like the UK’s Warnock Committee which historically grounded much legislation around IVF such as the 2008 HFE Act. Sam’s work hopes to address both the call for research and to start with marginalised groups by working with people with Absolute Uterine Factor Infertility and more specifically MRKH syndrome. Not only because they are the marginalised group both highlighted and made invisible in current research and discussion, but also because Sam is also part of this community, having MRKH herself.