Project Items
A socio-ethical investigation of the values and experiences of women volunteering to provide eggs for mitochondrial research under a scheme in which money is offered to egg providers
- Project Dates: From November 2013 to September 2016
- Project Leader: Professor Erica Haimes
- Staff: Dr Ken Taylor
This project asks the question:
What are the views, values and experiences of women volunteering to provide eggs for mitochondrial research on the social and ethical aspects of the offer of money to those who eventually go on to provide eggs?
The research team (Professor Erica Haimes and Dr Ken Taylor; with the assistance of co-applicant Professor Alison Murdoch) aim;
- To conduct the world’s first systematic empirical study of the views and experiences of non-IVF women volunteering to provide eggs for research in a scheme where money is offered to those who go on to provide eggs
- To fill a gap in knowledge by discovering and understanding volunteers’ own perspectives on the role and importance of money in their decisions to volunteer
- To add to existing knowledge about IVF patients who have volunteered to provide eggs for research by providing data on non-IVF women volunteering to provide eggs for research
- To fill a gap in knowledge by documenting how such a scheme for recruiting non-IVF egg providers works, and is experienced, in practice
The Wellcome Trust have awarded £199,905 under their Society and Ethics programme to fund this study of the views and experiences of women who volunteer to provide eggs for mitochondrial research.
Mitochondria are the ‘batteries’ of most human cells and are inherited from the mother; if they do not function correctly a number of serious debilitating conditions can arise.
Scientists in Newcastle University’s Wellcome Trust Centre for Mitochondrial Research and the Newcastle Fertility Centre aim to help families in which children inherit mitochondrial diseases.
These scientists are developing techniques to transfer the genetic material from prospective parents into eggs provided by women who are free from these conditions.
Recruitment of ‘healthy’ egg providers began in 2012 with the scientists offering £500 compensation to women who provide eggs.
It is these ‘healthy’ egg providers that this new Wellcome Trust-funded project will engage with, to understand their reasons for volunteering to provide eggs for the mitochondrial disease research.
This project builds on previous work funded by both the Wellcome Trust and MRC.
Download a 2015 project update (PDF: 468 KB) and a 2016 project update (PDF: 335 KB).
End of project
Analysis of the data gathered and writing for publication continued throughout 2015-16 and the project came to an end on 30th September 2016. The work of publishing results will continue for some time after this date and links to papers will be added below as they become available.
Erica and Ken would like to thank the Wellcome Trust for funding this project. Thanks also to Professor Alison Murdoch and her team for their vital contributions to this work and, most importantly, to the women of the North East of England who generously gave their time to talk with Erica about their experiences.
Lay summary of the findings of the project
This research project addressed the question, ‘What are the views, values and experiences of women volunteering to provide eggs for mitochondrial research on the social and ethical aspects of the offer of money to those who eventually go on to provide eggs?’.
This question was carefully worded to avoid making assumptions about how the offer of money was viewed by volunteers; for example, we wanted to avoid assuming that any money received was seen as ‘payment’ for eggs.
The purpose of the research was to fill gaps in current knowledge about: the values and experiences of volunteers; whether women who had had no fertility treatment viewed the act of providing eggs for research differently from women who had been IVF patients; how linking money to the provision of body parts is regarded by people providing those body parts.
We found that volunteers see helping other women, and receiving money, as linked, rather than as ‘either-or’ motivations for volunteering.
Volunteers defined ‘helping’ in multiple ways; it is not simply a quality of an individual’s personality but instead is dependent on various social arrangements that make it possible for the individual to offer help in the first place.
Volunteers also understood ‘money’ in a number of different ways that influenced how they reasoned about its role in their decision to volunteer.
There were numerous differences between volunteers who had not had fertility treatment and those who had, including how they viewed their eggs.
These differences suggest that the term ‘egg donation for research’ does not describe the same experiences for all volunteers.
This project highlights the need to consider the contributions of all parties in clinical research, especially the providers of bodily materials without which that research would be impossible. Inadequate consideration of providers can lead to inadequate ethical protections.
This project suggests that involvement of money in transactions around body parts in clinical research is not inherently immoral, given the multiple, and changing, understandings of ‘money’, ‘helping’ and ‘body parts’; however, careful attention should be given to the ethical details of any particular arrangements in which money is given and received.