Why stem cell research is a women’s issue
Why stem cell research is a women’s issue
Genetic technology is presented as the new miracle cure, a way to eradicate disease and prolong life, a technology with the ability to control the creation of life itself. Research and use of genetic technology continues to expand world wide including the use in biotechnology, genetic engineering and genetically modified food. Kristen Berger, Women’s Health Action policy analyst, explores some of the wider issues around gene technology and explores some of the issues raised for women in embryonic stem cell research.
The Impossible Dream?Dramatic cures are far from simple. The South Korean stamp was designed to celebrate the accomplishments of Dr. Hwang Woo-suk. Dr. Hwang gained international accolades for his genetic research. He and his team created Snuppy last August, the world’s first cloned puppy. In May 2005 he appeared to be way ahead of the pack publishing a study in the journal Science which claimed that he and his research team were now able to produce tailor-made embryonic stem cell lines. Unfortunately, it simply wasn’t true. This study, which grabbed world attention, has subsequently been debunked as a fabrication. The article has been retracted, and Dr. Hwang has resigned in disgrace. This has left much of the scientific community questioning how research is presented and verified. It has raised serious questions about the ways institutions and academics respond to research pressures.
Many of the potential uses of stem cells remain just that, potential. There are many health issues around the use of genetic knowledge and stem cell research. The reality is that we still don’t know the limitations of this research and are a long way off any practical health interventions from them.
A clear set of issues arising from the Dr Hwang case are around the integrity of scientific research today. Questions around these are being asked and debated but
another more fundamental set of questions remain unasked and unanswered. If we ask about the role of women in the case and what this means for women everywhere, a very different set of issues emerge. The egregious breaches of research practice have overshadowed the very real ethical issues that have yet to be considered from this particular story.
In November 2005, just as stories began to emerge around Dr. Hwang and his research team, a member of his team confessed to paying women for their eggs to use in this research. The confession of this ‘lesser’ breach may have been a smokescreen to divert attention from the fabrication of data in the study. Journal reports that Hwang’s research ‘used research assistants’ stem cell lines’ cloud the fact that the eggs of two research assistants were used. After one of Hwang’s doctoral students told Nature that she was a donor, Hwang argued that the report was false and it was a miscommunication exacerbated by broken English.
Women in Stem Cell ResearchHow are women impacted by stem cell research? How are they included in current research and what does genetic technology mean for women? There are a number of questions here. First, in the case of the Hwang research we can see clear concerns for women in the practice of genetic research. All stem cell research requires the use of women’s eggs. This raises serious concerns around women’s role as producers of the basic materials used in this research. A second set of questions evaluates the uses of genetic technologies and what this means for women in a gendered world.
To get back to the infamous stem cell research carried out by Dr. Hwang and colleagues at Seoul National University. His research assistants and students donated their own eggs to the research. It is a shocking abuse of power to have students donating their own body parts for research. This research requires the donation of a woman’s eggs- ova, ovum, oocytes - what ever part of the egg being used still requires the extraction of eggs (many!) from actual women. This has a wide range of implications and the possibility of the commodification of women is particularly disturbing.
The well understood power gradient between professor and student has been completely disregarded in Hwang’s research. Perhaps the students willingly donated their eggs, they are after all part of the research team, but this ignores the crucial ethical concerns surrounding any situation where one party holds so much power and sway over another. The report that in one instance of egg donation ‘professor Hwang accompanied the student to the hospital himself’ seriously questions the student’s ability to say no to this so-called ‘donation’. The other issue in this piece of research is that the research team also paid women to donate their eggs. Numerous international standards, and particularly those dealing with reproduction and reproductive capabilities, specifically forbid or censure the practice of paying for any body parts in research.
Despite insisting for months that the research relied on donated eggs, a key member of the research team admitted in November 2005 to paying women for their eggs. At least three women were paid $1,400 for their eggs. The potential exploitation of the poor in genetic trade is clear. All three of these women told Korean television that they were in dire financial circumstances and two stated that they had not been informed of the potential risks involved in the process.
‘Harvesting’ EggsAll embryonic stem cell research requires the use of women’s eggs. Some stem cells are derived from both egg and sperm (embryos created for the purpose of fertility treatment), others require only women’s egg (SCNT). Even the newest technologies for stem cell production, like ‘biological artefacts’ require large numbers of women’s eggs. Obtaining eggs from women is not straightforward – it is a difficult and risky process.
Large numbers of eggs are required to produce embryonic stem cells. As a women’s natural cycle only produces one egg per month, it is more efficient to get the women to produce multiple eggs. To obtain the necessary number of eggs to make the ‘harvest’ worthwhile a woman’s ovaries must first be “shut down” and then hyperstimulated. Both parts of this practice have potential dangers, most notably ovarian hyperstimulation syndrome (OHSS) which in the worst case scenario can lead to death.
If the vast research demands for eggs are to be met, literally millions of eggs will be needed for this purpose. For example, one study using cloned embryos required 176 human eggs to produce just one embryo. The many grand plans that abound in embryonic stem cell research will require vast numbers of eggs and large numbers of women to produce them.
The very serious potential side effects need to be off-set by the potential benefits of research. Although a “cure” for neurological diseases is seductive, research participants must weigh up their reasons for taking a completely avoidable risk. In addition to the known problems associated with OHSS and Lupron, (the drug used in the “shut down” part of the ovary stimulation), there remains a large potential for unknown risks. Dr. Ahuja from the Cornwall Fertility Centre notes that “we don’t know the long term consequences…we are not in a position yet to reassure women”
Women for salePayment for egg donations are a clear commodification of this ‘product’. In many countries, including New Zealand, payment for donations is banned. This seems like a fairly straight forward way to avoid commodification. However it is somewhat simplistic. The problem is that the only people who can make any money in the stem cell trade are then the researchers and institutions which hold the cell lines, while the women who donated their eggs and their bodies receive nothing.
Because embryonic stem cells can be cultured for very long periods of time, there is the potential to use one stem line for multiple research projects. The danger here is that once an approved research use is completed, these stem cell lines may now be given or traded with another researcher or institution. Even if the cell line remains with the same researcher the value of this limited commodity certainly represents an asset to that institution.
Currently, there is no international regulation around stem cells and regulations vary greatly from country to country. Embryonic stem cells may be traded internationally and processing or use in a third country further clouds the cell lines origins. Even if a country like New Zealand has very tight regulation around egg donation, there is the opportunity to use and support unethically obtained cells from countries with less stringent regulation. In fact as embryonic stem cell regulation becomes more stringent in some countries it may encourage others to be less rigorous as demand outstrips supply. To be an exporter of these valuable cells, or to attract research, some countries may well be tempted to put lax regulation in place. This could exacerbate the North South divide and encourage further exploitation of women from the developing world. A particularly repugnant aspect of this sort of trade is that the poor women, who are the most likely egg donors, are the ones least likely to benefit from new and expensive gene technology when and if it is found.
Even for women in the developed world, women’s role in research and their ability to benefit from it exhibits the same gendered discrimination evident in so many other areas of life. For many years women were left out of research which impacted on both men and women. The hypothesis that if it worked for men it would work for women was assumed. In 1985, a US Public Health Service task force concluded that the exclusion of women from clinical research was detrimental to women's health. This resulted in the adoption of guidelines by the National Institutes of Health (NIH) urging the inclusion of women in NIH sponsored medical research. In 1990, and again in 2000, General Accounting Office audits revealed that guidelines are not being followed and that even when women are included, gender analyses are rare. The impacts of this are examined in the recently released 10Q report which looks at the differential treatment and higher morbidity of women with heart disease, and belatedly attempts to address this.
Further issues are raised about what constitutes informed consent for women whose eggs created this bounty for sale. These issues were raised by Women’s Health Action in a recent submission on genetic research in New Zealand. Consent given for one purpose can not be assumed to be valid for the many various uses for the resulting stem line.
Women’s responseInternationally women’s organizations have responded to stem cell research with calls for banning embryonic research. In many places feminist ethicists and women’s organizations have decried the potential abuses in such research. However, we still lack international regulation. The type of regulation that can assure international trade is controlled and the divide between developed and developing nation is not exploited.
The use of high profile figures to promote and add emotive power to stem cell research potential is invidious. Superman and President Ronald Reagan are two high profile figures whose tragic lives have been widely promoted as a reason for us to use this new wonder science. These serve to cloud the fact that genetic technology is not inevitable, it is a choice that we make and we can choose not to go there. If the majority of people are informed about the implications of this research, they may well choose not have to go in a direction so fraught with danger. It is not good enough to devalue and minimise women’s concerns as a luddite response. It is not that women’s groups want to avoid technological innovation, it is that we choose to avoid exploitive technology that puts us up for sale. It is not insignificant that the Korean stamp features a man rising from his wheelchair!
1 Newsweek 12/5/05
2 New Zealand Herald 11/01/06
3 Galpern, E and M. Darnovsky The Nation 29/11/05
4 BBC News 30/06/05
5 See: http://www.womenshealthresearch.org/
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