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Cord blood stem cell banking and the problem of promissory technologies in health care

16 August 2010
By Dr Helen Busby
Sociologist
Appeared in BioNews 571
The possibilities presented by the storage or 'banking' of stem cells from umbilical cord blood after birth have attracted considerable public and media interest since the early part of this decade. The prospect of even a small number of mothers wishing to store their own cord blood privately has raised issues about patient safety, risk management and about the regulatory frameworks surrounding such activities (1). In addition, the promotional strategies of some of the private cord blood banks have been highly contentious. But in the melee of controversy and dramatic stories about 'cord blood collection in the car park' (2), have we lost sight of the legitimate interest that parents and patients have in cord blood banking and of wider public policy issues in this field ?

Stem cells from bone marrow have been used in medical treatment for some decades. More recently it became clear that there are advantages to using cord blood cell transplants for some patients with a range of malignant and haematological conditions, and there are other 'candidate' diseases that might be treatable in this way (3). Added to this, the possible value of cord blood stem cells in the nascent field of regenerative medicine is the subject of a wide range of research albeit without clear conclusions or consensus to date (4).

A high-level group has recently been established to advise the Department of Health in England and Ministers of the devolved administrations about strategic directions for the donation of stem cells. The group will make recommendations about how public cord blood banking services for use by patients in the NHS should evolve (5). Although the strategic group will focus on important issues of the supply and demand for stem cells, it will not directly address the issues associated with parents' interests in cord blood banking.

Currently, there are a handful of commercial cord banks actively targeting their services and advertising at expectant parents in the UK. In addition, some parents make use of commercial services in other countries. A small number of hospitals have arrangements in place to collect cord blood from donors for public cord blood banking with the National Blood Service and the Anthony Nolan Trust, but there are inevitably constraints on this service. Meanwhile, the dilemma of how to respond to women's requests for cord blood collection and storage falls to health care professionals in maternity services, guided by Trust policies if these are in place. In the absence of a broader national public policy about cord blood banking, we have a diverse patchwork of policies on cord blood collection in NHS maternity hospitals.

As part of a research project about multiple perspectives on cord blood banking, I interviewed both parents who had decided to use private cord blood banks and those who had taken up the invitation to donate cord blood to a public cord blood bank (6,7). I found that these parents, whilst having diverse perspectives and positions, have in common an interest in the future possibilities of transplant medicine and stem cell science. Whether storing umbilical cord blood privately or donating it for future use in public facilities, many see themselves as pioneers of potential new therapies.

To date, policy and regulation have focussed on the standards for collecting and storing tissues, along with ethical issues surrounding patient consent. Patient safety, clinical risk, and medico legal implications are also being addressed by the implementation of recent regulations and policies (8). Important as these issues are, there is another challenge, that of governing technologies that embody promising - but uncertain - directions for future treatments. I found that maternity services act as a key interface between the expectations around stem cells and the ethical, practical and legal frameworks that constrain their use. Official statements on the ethics of private banking often pivot on views about the utility of these stem cells in the future. Yet views on the likelihood of need for stem cell transplants are shifting, as are assessments of future applications in regenerative therapies (9). For policy makers, as well as parents, there is a problem of what to do with this uncertainty.

It might be said that parents choosing private cord blood banking are enacting consumer behaviours that are at the heart of key policies framing government health care agendas, and are exhibiting qualities of scientific citizenship that are sought after by policy makers. Nevertheless, cord blood banking is an example of a group of technologies that will require a great deal of attention in forthcoming years because of the 'promissory' dynamic that characterises their development (10). Technologies for which there are great hopes but no proven benefits pose significant challenges for the NHS and for European health systems more generally. Along with new 'personalised medicines' informed by developments in genetics, stem cell science and regenerative medicines they are at the heart of the European Commission's substantial investment in biotechnologies. Consultation and communication about these technologies should be higher on the agenda of policy makers and health care providers.

SOURCES & REFERENCES
10. Brown, N. Hope against Hype: Accountability in biopasts, presents and futures
Science Studies 16, 2: 3-21 |  2003
1.  The regulation of cord blood banking in England, Wales and Northern Ireland relies on the legal frameworks set out by the Human Tissue Act (2004) and by the European Union Tissues and Cells Directives. The implementation of these frameworks in the UK has to date been overseen by the Human Tissue Authority
|  8 July 2020
2. Devine, K. Cord blood in the car park: Cord blood stem cells, contamination and DIY collection exposed
BioNews |  16 March 2010
3. Rubinstein, P. Why cord blood?
Human Immunology, 67:398–404 |  2006
4. Hollands, P. and McCauley, C. Private cord blood banking: current use and clinical future
Stem Cell Reviews and Reports |  2009
5. Embryology question
Hansard |  12 July 2010
6. 'The contested ethics and expectations of commercial cord blood stem cell banking in the UK'
Funded by Wellcome Trust Fellowship in Biomedical Ethics (2006-2009) |  8 July 2020
7. Busby, H. The meanings of consent to the donation of cord blood stem cells: perspectives from an interview-based study of a public cord blood bank in England
Clinical Ethics 5,1: 22—27 |  2010
8. Griffin, S. UK's HTA voices concerns about unlawful cord blood collection
BioNews |  12 March 2010
9. Nietfield, et al. Lifetime probability of hamatopoietic stem cell transplantation in the US
Biol Blood Marrow Transplant |  2008
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