Project:

An investigation of women’s experiences of an IVF egg sharing scheme for somatic cell nuclear transfer research

From May 2008 to April 2011
Project Leader(s): Erica Haimes
Staff: Ken Taylor
Sponsors: Medical Research Council

Introduction

 

In 2008 Professor Erica Haimes was successful in obtaining a £295,000 award from the Medical Research Council (MRC) for a socio-ethical evaluation of women’s experiences of an ‘egg sharing for research’ scheme that is now operating in a fertility clinic in Newcastle upon Tyne.  It is intended that results from this study will be reported here in the first half of 2012.  Until then this space will provide background information about the study and its progress. 

The Newcastle ‘egg sharing for research’ scheme  (NESR) offers IVF patients reduced fees for treatment in exchange for eggs, which will be used in somatic cell nuclear transfer (SCNT) research.  SCNT is the technique in which the nucleus of an egg is removed and replaced with the nucleus of an adult body (somatic) cell from another person.  Also known as 'therapeutic cloning', the aim is to generate an ‘embryo-like’ entity from which stem cells can be harvested after about five days’ development.  These stem cells will thus carry the genetic material (DNA) of the somatic cell provider along with the small amount of the egg provider’s DNA present in the mitochondria.  Please click for more details on the SCNT technique.

The NESR scheme has attracted some criticism as well as support from a range of people including scientists, clinicians, policy-makers, religious, and special interest groups.  However, the scheme gained approval from the Human Fertilisation and Embryology Authority (HFEA) on the grounds that SCNT research will eventually lead to the creation of patient specific stem cell lines as described above.  These could then be used, for example, in the treatment of diabetes or Parkinson’s Disease without the cells being rejected by the patient’s immune system.  

Erica’s study is investigating the views, values and experiences of those women coming forward to provide eggs, in order to evaluate whether the potential scientific and therapeutic gains from SCNT research are achieved at social and ethical costs, or benefits, to egg providers.  This is the first empirical study of the subject and it will therefore provide vital evidence to inform the deliberations and practices of policy-makers, stem cell scientists, fertility clinicians, and the wider community, in the UK and worldwide.  The study will build on Erica’s earlier Wellcome Trust funded work on embryo donation to stem cell science.  

Project Update

November 2011

In February 2011 we hosted the 12th PEALS Annual International Symposium in Newcastle with the aims of communicating our key findings to practitioners and policymakers and advancing applied and theoretical debates on the uses of human reproductive tissue in research and treatment.  The Symposium was opened by Professor Sir Liam Donaldson, a previous Chief Medical Officer of England and Wales.  Participants from the UK, Australia, Canada, Germany and Belgium stimulated a range of lively debates; the discussion provoked by the contrast between empirical findings, such as ours, and normative approaches in the academic literature (for example whether reduced price IVF treatment in exchange for eggs for research exploits women) was of especial interest.

The research itself, and the Symposium, have been particularly timely given the 2010-11 Human Fertilisation and Embryology Authority consultation on the payment of gamete providers and the Nuffield Council on Bioethics Working Party on the donation of human tissue and organs for treatment and research.  Members of the HFEA and its Executive were active participants in the Symposium and the Chair of the NCoB Working Party, Professor Marilyn Strathern, provided the final keynote presentation. 

Two other events were held in parallel with the Symposium:

  • a meeting of our Project Advisory Group (PAG), and
  • a Café Scientifique. 

The former was a chance to talk through our early findings with three of the PAG members, and Erica and Ken wish to express their thanks for the constructive discussion.  The PAG members, together with a number of international delegates to the Symposium then participated in a Café Scientifique, public discussion.  This event was well attended by interested members of the public from the North East and generated lively debate on the subject of the ‘uses of human reproductive tissue in research and treatment’.

Fieldwork was completed early in the year and a thematic analysis of interviews has been conducted, leading to the identification of five core themes, and 14 other related themes, that are forming the basis of future publications.  The first article accepted for publication (in Sociology of Health and Illness) was on the subject of ‘exploitation’.

During 2011 key findings from the project were presented widely.  Ken spoke at the ‘Exploring the ELSI Universe’ conference at the University of North Carolina, USA and presented posters at both the European Society of Human Reproduction and Embryology annual meeting in Stockholm and the Stem Cells Europe conference in Edinburgh.  Erica discussed findings with colleagues on the Ethics and Public Policy Committee of the International Society for Stem Cell Research at their annual meeting in Toronto and at their international workshop at the Brocher Foundation in Geneva.  She also presented initial findings to the Innogen Research Centre in Edinburgh University and at the European Association of Centres of Medical Ethics annual conference in Istanbul.

Erica was invited by the Nuffield Council on Bioethics Working Party on 'Human bodies: donation for medicine and research' as a participant in their Experts' Opinion Forum on public versus private benefit from donation in November 2010.  In further international dissemination activities, Erica was Visiting Professor at Otago University, New Zealand in March 2011 and engaged in a full programme of meetings and presentations throughout the country. 

Funding for the project ended in July 2011 and our final report to the MRC was submitted at the end of October.  However, work continues on the analysis, drawing together the results of this and Erica’s ongoing embryo donation project, thanks to the generous funding of the Wellcome Trust.  A series of Briefing Sheets are being prepared for distribution to policy-makers, practitioners and all interested parties via this website.

 

November 2010

Dr Ken Taylor joined the project as Research Associate in September 2008 and guided the study through a full ethics review, gaining favourable opinions from the local NHS Research Ethics Committee and the Newcastle upon Tyne Hospitals Trust, Research and Development Department.  

Fieldwork has been ongoing since 2008 and Erica has conducted a number of interviews with volunteers for the scheme, some of whom went on to share eggs and some of whom did not.  These interviews have proved to be as rich and valuable as was hoped for and further efforts are being made to recruit interviewees from amongst a wider group of women who have expressed interest in the egg sharing scheme.  A strategy to identify and invite women who can provide insights from comparable experiences has also been crafted and interviews with these women and clinic staff took place in early 2010.  Ken has begun the analysis of various documentary materials, such media reports, to understand the context within which the interviewees’ experiences are situated.  

Key audiences were identified to whom the results of this study, and the comparative insights from the Wellcome Trust embryo donation study, have been disseminated.  Both Erica and Ken have presented papers to regulators, scientists, clinicians, patient group representatives, social scientists and ethicists at national and international conferences and workshops.  Analysis of the interviews has been completed and a programme of peer reviewed publications has been undertaken. 

Dissemination

 

Erica is exploring a number of collaborative ventures through the PARTS (Provision and Acquisition of Reproductive Tissue for Science) International Research Network which she launched in March 2009. Current partners are located in Canada, USA, Sweden, Portugal, Australia and New Zealand.  

 

Erica and Ken led a successful bid to host a symposium within the International Association of Bioethics World Congress, to be held in Rotterdam in June 2012, at which members of the PARTS network will engage in debate and discussion of issues arising, in part, from the MRC project findings.

Refereed papers:

 

Erica Haimes, Ken Taylor and Ilke Turkmendag (2011) Eggs, ethics and exploitation? Investigating women's experiences of an 'egg sharing' scheme, Sociology of Health and Illness (in press, Vol 34(8), Nov 2012).

Erica Haimes and Ken Taylor (2011) Researching the relationships between tissue providers, clinicians, and stem cell scientists, Cell Stem Cell, 8(6), 613-15.

 

Conference Presentations:

(Presenting author in bold)

Taylor, K. and Haimes, E. (2008) Exploring experiences of potential egg sharers in the UK.  A qualitative interview study, Organising bioethics: challenges for Western, Central and Eastern Europe, International Conference of the European Association of Centres of Medical Ethics, Prague, Czech Republic, 25-27 September.     

Haimes, E. (2009) Empirical investigations into socio-ethical aspects of acquiring eggs and embryos for human embryonic stem cell research: insights from the U.K.  World Stem Cell Summit, Baltimore, USA, 21-23 September. 

Haimes, E. and Taylor K. (2011) Investigating women’s experiences of an IVF egg sharing scheme for SCNT research, presentation to the PEALS Annual Symposium, The uses of human reproductive tissue in research and treatment: principles and practice, Newcastle upon Tyne, UK, 22-23 February.

Erica Haimes and Ken Taylor (2011), Investigating women’s experiences of an IVF egg sharing scheme for SCNT research: the relevance of an ownership discourse? Exploring the ELSI Universe, Chapel Hill, North Carolina, USA, 12-14 April, 2011.

Erica Haimes, Ken Taylor and Ilke Turkmendag (2011), Women’s views and experiences of an ‘egg sharing for research’ scheme: does local practice have global implications?, European Association of Centres of Medical Ethics 25th Annual Conference, ‘Bioethics from a cross-cultural perspective’, Istanbul, 15-17 September. 

Conference Posters: 

Erica Haimes and Ken Taylor (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 Conference, Barcelona July 8-11.

Taylor, K. and Haimes, E. (2010) Socio-ethical considerations in the recruitment of volunteers when acquiring eggs for stem cell research, European Society of Human Reproduction and Embryology 26th Annual Meeting, Rome June 27-30.  

Erica Haimes and Ken Taylor (2011) An investigation of patients’ views and experiences of an IVF ‘egg sharing’ scheme for somatic cell nuclear transfer research, European Society of Human Reproduction and Embryology Annual Meeting, Stockholm, July 4-6.

Erica Haimes and Ken Taylor (2011) An investigation of patients’ views and experiences of an IVF ‘egg sharing’ scheme for somatic cell nuclear transfer research, Stem Cells Europe Annual Meeting, Edinburgh, July 20-21.

Workshop, Seminar and Other presentations:

Porz, R. (2008) Some ‘male’ perspectives on IVF; stem cell research and the donation of surplus embryos”.: ‘Bridging the gap between empirical and normative methodologies in ELSA research?’ Workshop at the Centre for Theory of Science, University of Bergen, Norway, 29 May. 

Porz, R. (2008) Introducing a new qualitative interview study on the experience of undergoing an egg sharing scheme in Newcastle, Invited presentation at the Centre for Theory of Science, University of Bergen, Bergen, Norway, 30 May.

Erica Haimes (2010) Investigating women’s experiences of an IVF egg sharing scheme for SCNT research, PARTS Workshop, University of Sydney, 23 March. 

Erica Haimes (2010) Nuffield Council on Bioethics Working Party on ‘Human bodies in medicine and research’, Opinion Forum on considerations of ‘public’ and ‘private’ donation, 2 November. 

Erica Haimes (2011)  An investigation of women’s experiences of an IVF egg sharing scheme for somatic cell nuclear transfer research, Social Anthropology & Archaeology Seminar Programme, Otago University, 18 March. 

Erica Haimes (2011) Socio-ethical aspects of the IVF-stem cell interface: the case of 'egg sharing' for somatic cell nuclear transfer research, Innogen, University of Edinburgh, 11 April. 

Erica Haimes (2011) Pathways towards a sustainable ethics of human stem cell research, ISSCR Public Policy Committee workshop, The Brocher Foundation Hermance, Switzerland, 1-2 December. 

Staff

Professor Erica Haimes
Professor of Sociology & Executive Director (PEALS)

Dr Kenneth Taylor
Research Associate