A Lancaster – Cardiff collaboration

1. A Lancaster – Cardiff collaboration • Women in the frontline:recent developments/ issues in genetic and reproductive technologies • http://www.lancs.ac.uk/fss/cesagen/politics/

2. HGC + HFEApublic consultations on reproduction, fertility, embryo use and embryo screening Rise in embryonic screening(PND, PGD)for a range of conditions: Screening for specific type of breast and bowel ‘predisposition’ genes now has go- ahead; recent Hap marker technique development set to rapidly increase embryonic screening for a range of diseases[“slippery slopes”] “altruistic” egg donation[“duty”]and egg supply chains for “stem cell lines”, ‘therapeutic cloning’ [unpack the science] “enhancement” discourse and applications Recent developments and implications for feminism

3. Choice Progress Rights Duty Cures Treatments Enhancement Words play off against each other. Often set up as ‘either or’ – eg either you are in favour of cures, or if you are concerned eg with risks to women's bodies then you are QED ‘anti cures’. Or if you are concerned about embryo screening then QED you are ‘anti choice’. Not good for a thorough debate, when in reality nearly everyone identifies ambivalence and difficult decisions. No one wants to stick their head up above the parapet either. Words also normative ie meaning is constructed. ie “choice” Other issues given less airspace Political economy (globalisation, market-led science, the role of the global poor) Social justice (inequality, poverty), cultural norms and power relations (patriarchy) Commodification: of women's’ bodies, of the human Support (funded, ethical, social/ cultural) for difference, diversity Critiques of ‘medicalisation’ of health- social policy and social equity routes to health: also role of environment (pollution) on population health Core themes, issues, ‘buzzwords’

4. As identified in a previous talk, the many complex issues surrounding embryonic screening are impacting more rapidly, especially on women of childbearing age. Complex debate –Choice? Eugenics? Is knowledge power?  how far should you go in telling people information that may just be simply giving them more to worry about? Sure. It may be they can do something about it. It may be that they want to prepare themselves. There’s all sorts of reasons why you might want to know. But it’s not an automaticpresumption that genetic knowledge is necessarily a good thing. “Andrew” in interview 2005 “political economy” of genetic testing and screening; I mean genetics is quite difficult to commercialise in some ways. The obvious output of genetics is the diagnostic test. “Ian”, genetic innovations scientist and unit director , interview 2004 Screening difficulties:“the burden of choice”

5. Very hard to take a critical perspective when “pro life” (anti abortion) perspectives are in the mix: of course “we” –as feminists- are in favour of ‘women's’ right to choose’- or perhaps better put, our right to reproductive autonomy. How do we negotiate the tensions concerning prenatal diagnostics, embryo research and protection of abortion rights? NGO conference, Berlin, Heinrich Boell institute, 2003 “we don’t want to judge women who have PND…[these are] difficult decisions…” Sangeeta Fager, ‘Reprokult’, genetics workshop European Social Forum London Oct 2004 See previous talk- difficulties around screening for ‘serious disease’ (slippery slopes) Aborted girl foetuses (India); sex selection and gender essentialism (also UK- ‘family balancing’) QED burden of “choice” and the individual responsibility/ “duty” to ‘do the right thing for society’ :-though ‘choice’ can also be seen as ‘a good thing’ if knowledge truly does bring power Highly concerning is that people with extremely eugenic views are embedded within the medical/scientific hierarchy (Eg “preventing the existence of people with disabilities”: talk at the Royal Society, 2004) Women in the frontline of implications of genetics and reproductive /fertility technologies

6. Women bearing the burden of what we as a society think is ok or not ok to be born. Increasingly concepts of “duty” and “citizenship” are being invoked, not just in relation to reproduction, fertility and embryo screening, but for other [genetic] medical /health practises - is there instead a 'moral duty' to take part in such research, as argued by the ethicist John Harris in a paper published last year (Journal of Medical Ethics 31 (April 2005), p242-247)?   Harris says that anyone living in a society that has benefited - or expects to benefit - from medical research has a 'positive moral obligation' to participate in it. BioNews 342:23/1/06 Is it our 'duty' to take part in medical research? what will being a ‘good citizen’ mean in the realms of health and fertility? Who will decide? What pressures will women be put under to conform?(Plows and Boddington 2006 forthcoming) Egg “donation”-HFEA favours altruistic egg donation for cloning research Wilmut- women’s “duty” to donate eggs. refshttp://www.timesonline.co.uk/article/0,,8122-1634677,00.htmland http://www.ioh.uea.ac.uk/biopolitics/news.php “duty?”

7. We are very concerned about the proposal to allow cloning researchers to collect eggs from women who are not undergoing IVF, which the Human Fertilisation and Embryology Authority is discussing tomorrow…We are in favour of women's rights to control their bodies and their fertility. We believe that the risks of hormonal hyperstimulation of the ovaries cannot be justified in basic research, in which the benefits are very uncertain: the risk/benefit ratio is far too high…We call on the HFEA to reject this proposal, which represents a significant danger to women's health, and is a form of exploitation of women's bodies. Professor Donna Dickenson, Sarah Sexton, The Cornerhouse, Professor Regine Kollek, German National Ethics Council, Dr Alex Plows, Centre for the Economic and Social Aspects of Genomics, Dr Sigrid Grauman, Institute Mensch Ethik und Wissenschaft, Dr Itziar Alkorta Idiakez, University of the Basque Country, Dr Ingrid Schneider, University of Hamburg, Dr Giselind Berg, ReproKult, Germany, Dr David King, Human Genetics Alert, London See alsoWomens hour egg ‘donation’ discussion http://www.bbc.co.uk/radio4/womanshour/02/2006_20_tue.shtml “altruistic” egg donationThe Guardian(letters) Controversial conceptionsTuesday May 9, 2006

8. infertility stigma fuelling supply of eggs India- West via fertility clinics- free IVF cycles for women who donate eggs (Bharadwaj 2005) poverty similarly forcing women in Eastern Europe (Romania) to sell eggs (Sexton 2005) Western women being told its our “duty” to donate eggs Korean scandal (race to be the first to clone a human)- many female researchers involved with this research project were harmed as a result of egg “donation”. (The Korean cloning results, initially globally hailed as a scientific breakthrough, have recently been exposed as fraudulent). Feminism: the second wave again? (bodies, power, commodification, appropriation, patriarchy)Example: supply of women’s eggs to [Western] labs for stem cell and cloning research

9. Health, how to be healthy. Why not eg our “duty” as citizens wishing to contribute to the health of our society, to ensure all children living in the UK have a decent bed to sleep in at night and food on the table? Such questions are not to preclude or denigrate medical fixes/ cures but identify the [unhealthy?] predominance of medical intervention as a route to health (“medicalisation”, “geneticisation”). yes we have a different function because of our bodies but a lot of the reality of what that means and whether we can function in society is about how things are set up around us. Like my life in the last two years has been a hundred percent better because I’ve been in housing which meets my needs and its something as simple as being on the ground floor or whatever… “Sally”, Disability Rights activist in interview, 2005 “if cloning is the answer, what was the question?”(Sexton 1999)

10. use of [embryonic] stem cells for cosmetic breast enhancement- media reports re ‘future promise’ (Brown and Michael 2003) of stem cell technology in 2005. No coincidence that one of first commercial uses of nanotechnology is for anti ageing face creams -(L’Oreal) Makes the DR line quite clear/understandable- the emphasis is on changing yourself to fit social expectations; don’t expect society to change to accommodate you (“slippery slopes”)- Botox in your lunchbreak- we can see how this is going. This is NOT “empowerment” or “the new feminism” no matter what popular culture might say. It’s sexist, shallow, rubbish, dictated by cultural norms and market pressures. Women and beauty, women and age= a wealth of literature on these issues. These are core egs of why it feels like feminism never even happened. It feels very unfashionable to be critiquing such applications right now; we all want to look good, don’t we? Also again- words are normative. Why “progress” in one construction is oppression for someone else. “enhancement”

11. These issues are having a major impact in the here and now,and women are in the frontline. Whilst reproductive ‘choice’ is important, these are still very difficult decisions even for women (eg with ‘disease carrier’ status) who will welcome them. For many women, the first time they will be faced with thinking about these things is when they are having their first trimester health checks. Many other issues and developments are having an extremely negative impact on women, both here in the UK and globally (egg supply chains). In some cases it is almost like feminism never happened (cultural implications of enhancement). Policy is being made without proper informed social input (eg where are the factsheets/ leaflets on these issues in the doctors’ surgery or even in university in-boxes?!)- up to us to make ourselves heard, even if this is simply calling for more information. Important to have an input into issues which will affect us and that are increasingly being framed as our “duty” (Plows and Boddington 2006) These issues need to be the subject of discussion and debate by women's’ groups and other groups around the country. People need to be able to listen to many different perspectives in a supportive environment. It is also crucial to realise that several groups with a vested interest in promoting an uncomplicated framing of medical “progress” are dominating the media, increasingly dominating the public debate, and have a very glib construction re “if you aren’t in favour, then you are anti- choice/ anti cures”. Again it is an uncomfortable truth that such groups in many cases have the backing of the medical policy establishment. (but they at least are not pro life- who also dominate the media agenda!!) conclusions

12. HFEA consultationhttp://www.dh.gov.uk/Consultations/ResponsesToConsultations/ResponsesToConsultationsDocumentSummary/fs/en?CONTENT_ID=4132358&chk=CnrKSR Human Genetics Commission (2004) Choosing the Future: Genetics and Reproductive decision-makinghttp://www.hgc.gov.uk/Client/news_item.asp?Newsid=40 Guardian eggs letterhttp://www.guardian.co.uk/letters/story/0,,1770438,00.html Womens hour egg ‘donation’ discussion http://www.bbc.co.uk/radio4/womanshour/02/2006_20_tue.shtml PND, PGD feminism and ‘informed choice’ newsletter article:http://www.propeur.bham.ac.uk/NewsletterVol2.pdf Stem cells for breast “enhancement” –eghttp://www.newscientist.com/article.ns?id=dn7028 Feb 18th 2005. Supply chains of womens’ eggs for research: social justice/feminist perspectiveshttp://www.thecornerhouse.org.uk/summary.shtml?x=523542 Cesagen flagship project ‘The Emerging Politics of Human Genetic Technologies’http://www.lancs.ac.uk/fss/cesagen/politics/ Useful web references