Forgotten Fetuses - A Sociocultural Analysis Of The Use Of Fetal Stem Cells
Abstract
The objective of this research is to contribute to the development of UK policy and practice in relation to fetal stem cells, and to provide some data on which comparisons of the various sources of stem cells may be based. Although UK law and practice around the collection and distribution of aborted fetuses for research are permissive and well-regulated, there are implications for the collection of fetal stem cells, and there is pressure for change. Centred at the MRC [Fetal] Tissue Bank at Hammersmith Hospital , the research will investigate and analyse the social worlds where fetal material is located. In particular, development in regulatory arrangements, especially in relation to tissue banks and tissue engineering, will be observed; and how the use of fetal material as a source of stem cells might affect women's willingness to donate or clinicians' willingness to ask for donations, will be explored.
Contacts
Prof Julie Kent
Prof Naomi Pfeffer
Prof Wendy Purcell
Prof Gordon Stamp
Outputs
Webpage
http://www.uwe.ac.uk/hlss/research/regenbodies/index.shtml
Poster
http://www.york.ac.uk/res/sci/posters/kentproject.pdf
Press Releases
17 Jan 2007
Greater transparency urged about the use of aborted foetuses in stem cell research
Royal Society of Medicine Web page www.rsm.ac.uk/media/pr231.htm
Working Papers
Framing Fetuses, Framing Women: The Legislative And Governance Framework For The Collection And Use Of Aborted Fetuses In Stem Cell Research And Therapies. Pfeffer, N. & Kent, J*.
Publications
N Pfeffer (2008) What British women say matters to them about donating an aborted fetus to stem cell research,/ Social Science & Medicine, /*66*:2544-2554
Abstract
This is the first investigation into 'what matters' to British women when they think about donating an aborted fetus to research, and how stem cell research and therapies might influence their views. Tissue derived from the aborted fetus is considered 'the right tool for the job' in some stem cell laboratories. Research using tissue derived from aborted fetuses is permitted in Britain. Deliberate abortion to provide fetal tissue for research is illegal. Investigators are advised to seek women's agreement to donate the fetus after they have signed the consent form for the abortion. Stem cell researchers seek fetuses aborted under the 'social' grounds of the Abortion Act 1967. This focus group research found initial enthusiasm for the donation of the aborted fetus for medical research, which is understood as a 'good thing', diminished as participants gained information and thought more carefully about the implications of such a decision. Lack of knowledge about how aborted fetuses are treated as scientific objects in the stem cell laboratory provoked concerns about mishandling and invoked in some participants what we have called the duty to care which women feel towards babies and children. The duty of care might apply to other research using aborted fetuses. But what made stem cell research more troubling is its association with renewal, regeneration, and immortality which participants understood as somehow reinstating and even developing the fetus' physical existence and social biography beyond abortion, the very thing abortion is meant to eliminate. By the end of the focus groups, participants had co-produced a tendency to refuse.
Pfeffer, N. & Kent, J. (2006) Consent to the use of aborted fetuses in stem cell research and therapies. Clinical Ethics, 1: 216–218
http://www.rsm.ac.uk/media/downloads/ce06-12pfefferkent.pdf
Kent, J. & Pfeffer, N. (2006) Regulating the collection and use of fetal stem cells: They currently lie in a regulatory limbo. British Medical Journal 332:866-867.
http://bmj.bmjjournals.com/cgi/content/full/332/7546/866?ijkey=B56vvkOcFrIPcPz&keytype=ref
Note: papers on Tissue Engineering by Dr. Julie Kent are from earlier ESRC funded research. Papers on blood by Professor Naomi Pfeffer are from an earlier Wellcome Trust funded project.
Kent, J. Faulkner, A. Geesink, I. & Fitzpatrick, D. (2006) Culturing cells, reproducing and regulating the self. Body & Society, 12(2): 1 -23
Pfeffer, N. & Laws, S. (2006) It's only a blood test: what people know and think about venepuncture and blood Social Science & Medicine, 62, 3011-3023.
Faulkner, A. Kent, J. Geesink, I. & FitzPatrick, D.( 2006) Purity and dangers of regenerative medicine: Regulatory Innovation of human tissue-engineered technology. Social Science & Medicine in press.
Brown, N. Faulkner, A. Kent , J. & Michael, M. (2006) Regulating hybrids: ‘making a mess’ and ‘cleaning up’ in tissue engineering and transpecies transplantation. Social Theory and Health Vol. 4, 1-24.
Kent, J. Faulkner, A. Geesink, I. & Fitzpatrick, D. (2006) Towards governance of human tissue engineered technologies in Europe : Framing the case for a new regulatory regime. Technological Forecasting and Social Change, 73, 41-60.
Kent, J. & Faulkner, A. (2002) Regulating human implant technologies in Europe : understanding the new era in medical device regulation. Health, Risk and Society Vol. 4, pt. 2, 190-209.
Faulkner, A. C. Kent , J. A. Geesink, I. & Fitzpatrick, D. (2003) Human tissue engineered products: drugs or devices? : tackling the regulatory vacuum. British Medical Journal, 326: 1159 - 1160
http://bmj.bmjjournals.com/cgi/content/full/326/7400/1159
Abstracts from project publications
Consent to the use of aborted fetuses in stem cell research and therapies. (Clinical Ethics)
This paper identifies the legal and policy framework relating to the use of aborted fetuses in stem cell research and therapies and contrasts this with the collection of embryos for research. It suggests that more attention should be given to questions about the kind of consent sought by researchers from women and that there should be more transparency about how aborted fetuses are used. It reports on variability in current practices of research ethics committees and researchers and uncertainty about the guidance available to them. It argues that there is a need for wide public discussion about the policy issues relating to fetal tissue use in stem cell research and the need for clarification of the law in this area.
Regulating the collection and use of fetal stem cells: They currently lie in a regulatory limbo (BMJ)
The British government is committed to supporting stem cell science and industry. An important part of that commitment is a strong regulatory environment, seen as being embodied in the Human Fertilisation and Embryology Authority (HFEA), which oversees a strict but permissive regulatory framework and contains public concerns about the use in research and treatment of human embryos. However, the HFEA regulates only the use of embryos created in vitro. It has no jurisdiction over the use of aborted fetuses, which are still subject to guidelines drawn up 17 years ago and have been neglected in recent discussions around stem cell research.
Conference presentations
Kent J. & Pfeffer N. (2007) ‘Regulation and governance of the collection and use of fetal stem cells in the
Pfeffer N. & Kent J. (2007) ‘The debut of the fetal cadaver.’ Health, Governance and the Global: Cultural histories and contemporary practices,
Pfeffer N. & Kent J. (2007) ‘Collecting Aborted Fetuses for Medical Research: Extracting value out of “Biotrash.”’ Pursuing Procreation: Wellcome Trust Centre for the History of Medicine,
Kent , J. & Pfeffer, N. (2006) 'Regulation and governance of the collection and use of fetal stem cells in the UK .' Governing Genomics: Interdisciplinary perspectives on the regulation of the biosciences (25-28 January 2007.)
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Kent, J. & Pfeffer, N. (2006) ‘Ethics and Regulation in the Social World of the Fetus.’ Mapping Stem Cell Innovation in Action: ESRC Stem Cell Programme. Workshop 2: Ethics Regulation and the Development of Stem Cell Therapy. ( 16 October 2006 )
Pfeffer, N. & Kent, J. (2006) 'On the Margins of life and Death': ‘Foetal Fortunes’: A symposium on the history of foetal and infant health and welfare in Europe from 1700 to the present. Centre for the History of Medicine, University of Glasgow . ( 1 September 2006 )
Kent, J. & Pfeffer, N. (2006) ‘Immortality, Death and Life: The dead fetus as a source of stem cells for regeneration and tissue repair.’ : “Reviewing humanness: bodies, technologies and spaces” EASST 2006 conference, Lausanne , Switzerland (23-26 August 2006.)
Pfeffer, N. (2006) ‘Aborted fetuses in medical research and experimental therapy.’ Conference of European Biopolitics , Berlin (17-19 March 2006)
Abstracts from Conference Presentations
'Regulation and governance of the collection and use of fetal stem cells in the UK .': "Governing Genomics: Interdisciplinary perspectives on the regulation of the biosciences."
There are important differences between the regulation and governance of human embryonic stem cells and fetal stem cells. This paper highlights these differences suggesting that while so far they appear to occupy separate regulatory arenas the boundaries between them are potentially unstable. The social worlds of the embryo and the fetus are connected and overlap in certain respects. Moreover while elsewhere abortion politics has strongly affected government attitudes towards stem cell research, so far in the UK the linkages between human embryonic stem cell research and fetal stem cell research have been obscured. Social scientists too have neglected to explore the relationship between the abortion clinic and the IVF clinic yet stem cell research in the UK uses both aborted fetuses and embryos created in vitro.
'On the Margins of life and Death': "‘Foetal Fortunes’: A symposium on the history of foetal and infant health and welfare in Europe from 1700 to the present."
Since the Abortion Act was passed in 1967, many thousands of aborted fetuses have been 'produced' by a legal but nonetheless controversial procedure. English law does not recognize a distinction between a fetus in utero and that of the woman in which it was implanted, or, put another way, tissue of the fetus in utero and that of a fetus ex utero that has not been born alive is the woman's tissue and can be treated like other 'residual ' tissue following clinical and diagnostic procedures, that is, it can either be disposed of as clinical waste or used in medical research.
This paper traces the coincidental emergence of the cadaveric fetus, a legal anomaly, in official policy: 'respectful' disposal which is meant to allay anxieties about treating aborted fetuses as abject material, and guidelines on ethical conduct of research - specifically, the Peel Code of Practice (1972) and the Polkinghorne Guidelines (1989) – which were introduced to overcome objections to their use instrumentally in research.
‘Immortality, Death and Life: The dead fetus as a source of stem cells for regeneration and tissue repair.’: “Reviewing humanness: bodies, technologies and spaces” EASST 2006.
The fetus ex utero is a source of valuable research material. It is also used in the development of therapies. For example, since the 1980s, fetal brain cells have been transplanted experimentally into the brain of people with Parkinson's disease. The fetus ex utero has been recruited into stem cell research and technologies as a source of stem cells, in part because it is neither technically feasible, nor legally permissible (in the UK), to sustain a human embryo in vitro beyond 14 days. The UK Stem Cell Bank will curate ethically sourced, quality controlled adult, fetal and embryonic stem cell lines which are ‘immortalised’.
The emergence of stem cell research and technologies therefore implies a re-conceptualisation of biological life and death. While this re-conceptualisation has been considered by social scientists and feminists in relation to human embryos in vitro, our paper examines its impact on the fetus ex utero. It considers the fetus ex utero as a boundary object, that is, as biological resource, a museum specimen, clinical waste, a corpse deserving respect, and the remains of a 'wanted' or 'unwanted' 'unborn child'.
‘Aborted fetuses in medical research and experimental therapy.’: " Conference of European Biopolitics 2006."
Aborted fetuses are sources of uniquely valuable material used in fields such as embryology, virology and vaccines, transplantation (neural, liver, thymus), tissue banking (skin), fetal medicine (development of pre-natal diagnostic techniques), stem cell research, cosmetics and quack remedies.
In law and practice, embryos created in vitro cannot be retained beyond 14 days post fertilisation. Fetuses older than this are found as a result of abortion. Little is know about the extent to which aborted fetuses are used because of:
Language: strictly speaking, 'fetus', a scientific term, only comes into effect after the eighth week following fertilization, that is, when morphogenesis is complete and the embryo has assumed the form and structure of its parents. 'Embryos' applies up until eight weeks. However, the distinction is rarely made in lay accounts of stem cell research.
Statistics: data on how many aborted fetuses are provided to investigators and industry are not routinely collected.