Stem Cells, Women, and Dangerous Things

1. Stem Cells, Women, and Dangerous Things Charis Thompson Associate Professor, Gender and Women’s Studies and Rhetoric Director, Science, Technology, and Society Center Project Director, Stem Cells and Society Director, Designated Emphasis in Women, Gender, and Sexuality Member, Academic Senate Committee on the Status of Women and Ethnic Minorities UC Berkeley

2. Overview: From Babies, Barriers, and Bias to Pioneers, Priorities, and Procurement • Women in Stem Cell Science • The Stem Cell Science of Gender • The Gender(ing) of Stem Cell Science (Those who write about stem cells, unlike those who write about assisted reproductive technologies, are not feminist or even post-feminist)

3. 1. Women in Stem Cell Science • Distribution by gender among stem cell scientists • Academy-industry alliances and IP new gap in which to get left behind • Workplace culture, especially “family balancing” • Values of women researchers and clinicians, e.g. disease research priorities

4. Distribution by gender among stem cell scientists • Charismatic megafauna almost all men in field, private and public, corporate and academy • Mixed: e.g. at UC Berkeley, <20% of senior faculty are women, BUT ~ 40% of junior faculty in the biological sciences are women, from a UCB applicant pool of ~ 30% women; underrepresented minority women pipeline still not functioning; close to parity in US PhD pool among top quartile research institutions • Women clinicians involved in IVF / HESC interface; also fairly well represented in ethics, law, tech transfer, bio-banking, regulation

5. Academy-industry alliances; IP • Recent work suggesting that women life science faculty lag behind men in start-up and IP activity • This compounds the gender earnings gap; reduces the likelihood of discoveries making it to market - and thus to therapies - and makes it less likely that credit (pay, rank, prizes) will accrue to scientists from downstream visible pay-off

6. Family Balancing… • Workplace culture critical, especially balance of family/other obligations with work place excellence • “Family balancing”: expression used to garner support for sex selection: presents gender-planned family as efficient, and even feminist, allowing women to go to work; rationalize labor of production side as well as labor of reproduction (my own suggestion would be to move women up faster, rather than slowing down tenure clock, so that they have to spend less time in the lab…)

7. Priorities for Publicly Funded Research? • 1. Scientific prospects: diseases most amenable to stem cell treatment • 2. Severity: diseases with fastest ticking clock and worst symptoms • 3. Economic: diseases where the expenditure/cure ratio is best • 4. Single path: diseases lacking other treatments, regardless of severity • 5. Incidence: diseases that afflict the most people • 6. Public health: diseases that disproportionately effect sectors of population that are least likely to be able to afford products of private sector R&D and health care costs • 7. Organic: building from existing interest in particular research questions and researcher expertise without regard to above criteria • 8. Activist driven: diseases with the best organized activist community

8. The Stem Cell Science of Gender As has been argued, science reflects, re-imagines, and reinscribes theories and contradictions of gender and sexuality • In vitro fertilization “leftover” and “supernumary” embryos • Moral status of the asexual embryo of somatic cell nuclear transfer • Sexing the embryo

9. Where do Human Embryonic Stem Cells come from, Mommy? “Sect. 4. Article XXXV is added to the California Constitution, to read: . . . There is hereby established a right to conduct stem cell research which includes research involving adult stem cells, cord blood stem cells, pluripotent stem cells, and / or progenitor cells. Pluripotent stem cells are cells that are capable of self-renewal, and have broad potential to differentiate into multiple adult cell types. Pluripotent stem cells may be derived from somatic cell nuclear transfer or from surplus products of in vitro fertilization treatments when such products are donated under appropriate informed consent procedures.” (Prop 71’s Missing Women, my emphasis).

12. The Problem of Asex, or, the Heteronormativity of the Moral Status of the Embryo Debate • SCNT: Embryo Creation or Destruction? NO: • There is no involvement of germ cell nuclei, and NO SPERM! • There is no meiosis • There is no fertilization • There is no procreational intent (the principle that has become critical to US law in disambiguating underdetermined parentage, e.g. Calvert v. Johnson) • SCNT: Embryo Creation or Destruction? YES: • A blastocyst is by definition an embryo • SCNT blastocysts can, in some tiny proportion of cases, lead to the birth of offspring, if implanted (Dolly the Sheep) • Removing the inner cell mass prevents the blastocyst from developing

13. Sexing the embryo… Pre-implantation genetic diagnosis, where in-vitro embryos are examined for genetic disease; crucial for Lanzer idea (non-destruction of embryo in HESC), as well as for “disease in a dish” rationales for human embryonic stem line derivation and bioassay and drug toxicity testing, and matched sibling cord blood hematopoietic stem cell transplants Reinscribes a chromosomal biologization of sex/gender • NIH registry sexes the approved lines…

14. The Gender(ing) of Stem Cell Science The Gendering of Regenerative Medicine: The rise of egg donation as THE women’s issue, and the role of markets, academy and publics in “procurial” life science Women’s issues pushed off-stage: health care priorities and disparities, health carers, health activists

15. Egg Donation: THE Woman’s Issue? • Why did procuring women’s eggs for human embryonic stem cell research suddenly become THE women’s issue? • Concerns about medical and psychological risks associated with donating eggs, e.g. OHSS / impact on future fertility/potential increased risk of reproductive tract cancers • Worries that low-income women would be coerced into donating eggs if paid (but not paying egg donors may increase the risks of donation by reducing pool of donors to patients themselves, who have higher co-morbidity) • Taint of Hwang Woo Suk scandal • NAS and many others ruled out payment already

16. Egg Donation • Not self-evident that egg donor protection would have become, or ought to be, a paramount women’s issue • NOT a “women’s issue” in IVF; indeed, widespread parody of donors and their suitors, despite: much greater financial inducements; potential for eugenics; elevated risks due to poor regulation of field, youth and nulliparity of modal donors, emphasis on high egg yield, incest; potential for charge of baby-selling • How come only donors don’t get paid (unilateral altruism)? Some of us argued FOR payment • Other tissues and organs: some gifted, anonymous or known, and some paid for; no general rule

17. Regenerative Medicine as “Procurial” Life Science • Biosecure: closed capital • Billanthropic: excess capital • Big pharma: market capital • Procurial: promissory capital (“hope-hype”) • Regenerative medicine suffers from various market failures, including: political opposition owing to moral status of embryo; difficulties in scale-up and inapplicability of IND and clinical trials procedures for cell-based therapies, especially if aiming for histocompatibility; lack of proof of principle in key areas; gene therapy specter overhanging trials • VC doesn’t like it; 5-year exit not likely • Need way to get research funded as either pure science (no-go in the US currently) or get public and private monies for start-up costs

18. Hello Dolly, Buy-Bayh-Dole • Regenerative biology and medicine has to get support from and withstand scrutiny of the public, to get public money, and start bench to bedside ideal of the post-Bayh-Dole era: • Pro-cures, tried and true way to get government subsidy for open science, where appropriations need to go through the public; heightened for regenerative medicine because of federal policy. Patient desperation • Procurement, need to get “stakeholder” permission, also old concern, but crucial in post-Belmont age of the protection of human subjects, and has only grown with AIDS activism, genome bioprospecting, and recruitment for global clinical trials; eggs goes one step further in being a research substrate. Donor protections

19. Missing Issues: • Health care disparities, especially by race, class, and disability, e.g. Greenlining • Health care priorities: is this what we want to spend public money on? • Accountability/transparency/conflicts of interest • Integrating and taking account of women’s special kinship and labor roles as health care guardians and care-givers, as well as their roles as patient advocates • Public opposition spokeswomen: CGS, HOOO, Disability Rights activists, Pro-Choice Alliance • Transnational egg trade: off-shored incentives