From June 2003 to March 2012
Project Leader(s): Erica Haimes and Alison Murdoch, Newcastle NHS Fertility Centre (co-applicant)
Staff: Ken Taylor (Research Associate)
Sponsors: The Wellcome Trust
The full title of the research project was A comparative study of embryo donors’ and non-donors’ views on embryo experimentation for pre-implantation genetic diagnosis and stem cell therapies.
The study involved interviews with women and men undergoing IVF treatment who did and did not consent to donate embryos for research related to embryonic stem cell research and preimplantation genetic diagnosis. Interviews were also conducted with women and men who did not use in vitro fertilisation technologies to conceive about their views on embryo research.
Through this research, our aim was to explore the people’s experiences of being asked to donate embryos and the processes by which they came to their decision to donate or not. We examined the similarities and differences between people’s views on pre-implantation genetic diagnosis (PGD) and stem cell research, as well as embryo experimentation more generally. Does the context of IVF treatment influence people’s views on embryo experimentation? Do people differentiate between consenting to donate embryos to research related to PGD or embryonic stem cell research? Or are people likely to either consent to donate or not consent? What experiences and/or relationships do people draw on in the process of making their decisions?
The project aimed to provide practical feedback to clinical scientists, practitioners, and policymakers concerned with genetic and reproductive medicine. Although new developments in the field of reproductive science, genetics and stem cell biology are raising significant questions, there is little known about the views and experiences of potential donors of embryos that are used in current research.The project helped to provide much needed data on the ethical and social acceptability of embryo experimentation to potential donors and also to contribute new knowledge to bioethical debates on embryo research.Ongoing analysis of emerging issues and close engagement with health professionals, policy makers and other scholars in the field was a priority of the project. Reflections on the ethical issues related to embryo research and potential implications for both embryo donors and non-donors were presented at a range of workshops, seminars, and international conferences.
Now in its final year, the focus of our Wellcome Trust funded work has been the dissemination of findings to a wide range of audiences. Erica and Ken have also spent time drawing together the results of this project with those of the MRC funded project on egg sharing for research. These activities have been helped by the flexibility of the funders, the Wellcome Trust, which is gratefully acknowledged.
Between March and April 2011 Erica visited a number of centres in New Zealand, including Auckland, Wellington and Dunedin, where she was a Visiting Professor at Otago University. In a very full programme of meetings, she spoke with a number of fertility specialists, ethicists and regulators to discuss developments in fertility treatment, stem cell research and in the regulation of both these areas in New Zealand. Her visit also allowed further collaboration with New Zealand members of the PARTS (Provision and Acquisition of Reproductive Tissue for Science) International Research Network, which continues to flourish, thanks to the extension of funding from the Wellcome Trust. The PARTS network aims to influence research agendas and encourage dialogue between social scientists, ethicists, lawyers, theologians, clinical practitioners, scientists and policy-makers.
Erica and Ken’s article on fresh embryo donation to human embryonic stem cell research was published in Bioethics in July 2011. A further paper setting out some questions for future studies of egg and embryo providers, those who procure these tissues and the scientists who use them was published in the prestigious science journal Cell Stem Cell in June 2011.
Erica and Ken led a successful application on behalf of the PARTS network to host a symposium as part of the International Association of Bioethics World Congress in Rotterdam, June 2012. Erica and Professors Catherine Waldby of Sydney University, Sheryl de Lacey of Flinders University, Adelaide and Francoise Baylis of Dalhousie University, Canada will lead a discussion on the theme ‘Ethical challenges in the uses of human reproductive tissue in scientific research: procurement and protection?’ that will explore many of the issues arising from the embryo donation project.
Erica was a successful co-applicant on a bid to the Canadian Institute for Health Research (Ethics Office) for a project that replicates and extends her various research studies of the provision of human embryos and eggs for stem cell research. She will be working with Professor Francoise Baylis from Dalhousie University (Principal Investigator), Dr. Art Leader, of the Ottawa Fertility Centre and Associate Professor Carolyn McLeod from the University of Western Ontario, and with Dr Pamela White, the newly appointed researcher on the project. The team were awarded over $CAN450,000 in January 2011 for the three year study: ‘Embryo and egg donation for stem cell research in Canada’. This research will provide practical feedback to researchers, practitioners, and policymakers concerned with assisted human reproduction, including whether or not potential therapeutic gains from research are achieved at social and ethical costs for tissue providers.
Work has continued on this Wellcome Trust-funded project with the focus on dissemination through presentations and publications. Erica and Ken presented findings to policymakers on the Human Fertilisation and Embryology Authority, to scientists at the annual conference of the International Society for Stem Cell Research in Barcelona, and to academic groups in the USA and Canada. A major article was published in Human Reproduction (2009) and another will be published in Bioethics in 2010.
Since there is so much interest, worldwide, in what are seen to be liberal UK practices of embryo donation for stem cell research, Erica also decided to ensure that this research facilitated further research and debate across the world, by launching the PARTS (Provision and Acquisition of Reproductive Tissue for Science) International Research Network.
The project, assisted through 2007-8 by Ken Taylor, is now well into its dissemination phase. There is much national and international interest in the question of whether IVF patients should be asked to contribute embryos (that cannot be used for their treatment) to stem cell research. Questions include: should experimentation be allowed on the human embryo under any circumstances; which sorts of embryos should IVF patients be asked to contribute (ones from their current treatment or ones which they have frozen and stored for future treatment); how is it decided that certain embryos cannot be used for fertility treatment and how is it decided, and by whom, whether such embryos are truly spare; to what extent we should regard these contributions as altruistic donations or whether more complex negotiations are involved.We have addressed these questions in detail through a number of presentations and publications. In particular the PEALS Annual International Symposium in April 2008 on ‘the identification, regulation and implications of risk within stem cell research’ was a major platform for discussions and dissemination of these and related issues. We also presented at the international conference ‘Translating ELSI: Global perspectives on research on ethical, legal and social implications of human genome research’ in Cleveland, Ohio, USA and to a number of other meetings, including one to the ESRC Genomics Research and Policy Forum annual meeting in October 2008 where we were awarded the prize for best poster. A major development from this project was the successful proposal to the Medical Research Council to conduct a socio-ethical evaluation of the new egg sharing scheme. Following the successful extension of this project to Switzerland and to a pilot study in China, we are now exploring further parallel studies through Portugal, Canada, New Zealand and the USA and are forming a new international research network, Provision and Acquisition of Reproductive Tissue for Science (PARTS), to facilitate such collaborations.
Erica Haimes and Susan Dowdle are now well into the final year of this study. Interviews with people going through IVF treatment, who have been asked to donate un-transferred embryos, have been completed and are now undergoing systematic analysis. Susan has also been compiling a comprehensive literature database covering publications in the social, legal and ethical aspects of this complex field. Both Susan and Erica have attended a number of meetings over the last year to ensure that the project analysis takes into account, and is embedded within, the major national and international research and debates. Of particular importance is the collaboration between this project and a parallel study being conducted by colleagues Christoph Rehmann-Sutter, Jackie Leach Scully and Rouven Porz in Basel, Switzerland (see under "Collaboration", below).In 2007 Erica will be working closely with our Basel colleagues, as both teams refine their analyses and conduct a systematic comparison between the two projects. This collaboration is made easier by the fact that Jackie is now a Senior Lecturer in Sociology at Newcastle University. PEALS also now has a ‘stem cell group’ as we are involved in a number of projects around stem cell research including work with the Northeast England Stem Cell Institute (NESCI), a programme of co-inquiry activities around stem cell research, ethics review exercises with scientists and clinicians working in this area, as well as this current project.
Research on this project is now well underway following the appointment of anthropologist Dr. Jacquelyne Luce in April 2004. The initial period of the project involved familiarisation with IVF clinical practices and an exploration of the various recent practical and rhetorical changes in the conceptualisation of embryo research and procedures for requesting consent for the donation of embryos in response to new research practices associated with, particularly, embryonic stem cell research. The second stage of this project, a year of intense fieldwork involving interviews with people who were asked to donate embryos as well as people who did not participate in fertility treatment to conceive, has now commenced.
Haimes, E. and Luce, J. (2006) Studying potential donors' views on embryonic stem cell therapies and preimplantation genetic diagnosis, Human Fertility, 9, (2), pp. 67-71
Haimes, E., Porz, R., Scully, J. L. and Rehmann-Sutter, C. (2008) “So, what is an embryo?” A comparative study of the views of those asked to donate embryos for hESC research in the UK and Switzerland , New Genetics and Society, 27, (2), pp. 113-126
Haimes, E. and Taylor, K. (2009) Fresh embryo donation for human embryonic stem cell (hESC) research: the experiences and values of IVF couples asked to be embryo donors, Human Reproduction, 24 (9), 2142-2150
Haimes, E. and Taylor, K. (2010) Should IVF patients be asked to donate spare fresh embryos for human embryonic stem cell (hESC) research? Using empirical evidence to address the socio-ethical issues of embryo donation, Bioethics. Advance online publication: doi:10.1111/j.1467-8519.2009.01792.x
Haimes, E. ‘The contribution of social constructionism to the study of the ethical, social and political aspects of the life sciences’, in Derkx, P. et al, eds, ‘Towards a lingua democratica for the public debate on genomics’. Revised chapter submitted March 2009
Haimes, E. ‘Socio-ethical considerations in the provision of eggs and embryos for hESC research: lessons from the UK’ in Doering, O. Ed, ‘Ethical governance of biological and biomedical research: Chinese-European co-operation’, text book for the EU.
Haimes, E. and Taylor, K. (2011) Researching the relationships between tissue providers, clinicians and stem cell scientists, Cell Stem Cell, 8 (6):613-615Haimes, E. and Taylor, K. (2011) Using empirical evidence to address the socio-ethical problems of requesting ‘spare’ fresh embryos for stem cell research, Bioethics, 25 (6):334- 341
Haimes, E. and Taylor, K. (2008) Fresh or frozen? Socio-ethical issues in acquiring and providing human embryos for embryonic stem cell research, International Bioethics Association, 9th World Congress, Rijeka, Croatia. 4-9 September.
Haimes, E. and Taylor, K. (2008) Socio-ethical issues in acquiring and providing human embryos and eggs for embryonic stem cell research, Translating ELSI: global perspectives in research on the ethical, legal and social implications of human genome research, Center for Genetics Research Ethics and Law (CGREAL), Case Western Reserve University, Cleveland OH, USA, 1-3 May.
Haimes, E. and Taylor, K. (2008) Socio-ethical issues in acquiring and providing human eggs and embryos for embryonic stem cell research, Genomics and Society: Reinventing life?, annual conference of the ESRC Genomics Network, London, UK, 27-28 October.
Haimes, E. And Taylor, K. (2009) Ethical aspects of acquiring eggs and embryos for human embryonic stem cell research: implications for scientists from empirical studies of providers’ views, International Society for Stem Cell Research 7th Annual Meeting, Centre Convencions Internacional, Barcelona, Spain, 8-11 July.
Professor Erica Haimes
Professor Jackie Leach Scully
Dr Kenneth Taylor