Advancing Reproductive Justice within the ART Field:

1. Advancing Reproductive Justice within the ART Field: Challenges posed by cross-border surrogacy and egg “donation” practices

2. Gender and Justice in the Gene Age A Feminist Meeting on New Reproductive and Genetic Technologies (www.gjga.org) (funding provided by the Ford Foundation) New York City, May 6-7, 2004

3. Participants articulated strong opposition to: • sex selection and disability deselection without support for a law that would make selective abortion illegal • the ideal of perfection of humans and children • the commercialization of health and commodification of human life, body parts or cells • practices and social conditions that pressure people to select children based on their traits, or to select traits in their children • the development and proliferation of technologies that select, modify and commodify children.

4. Assisted Reproduction TechnologySelected Challenges Today • The increasing demand for women’s eggs for both IVF purposes and for use in research (infertility not the only reason) • Increasing demand for women as commercial gestational mothers and growth of “cross-border” surrogacy

5. Lack of adequate safety data for many infertility drugs, especially the class of drugs that suppress ovulation, while substantial anecdotal evidence of harm grows. • Theproliferation of misleading advertisements and marketing schemes to increase both the demand and supply

6. Deflection of attention and resources AWAY from the primary prevention of infertility (eg, STIs, toxic exposures)

7. Columbia University

8. U of California San Francisco Chinese Donor - Urgent! Young Chinese Egg Donor Needed. Remuneration: $100,000.00 and Negotiable. Loving & Caring Chinese Family is looking for healthy, young (under 32), highly intelligent, Chinese egg donor.

10. U of California Berkeley Newspaper

11. Emory University Newspaper

12. Growing Use of Gestational Mothers NYT, Feb 19: “And Surrogacy Makes Three” “….Ms. Whitehead was artificially inseminated using her own egg and the prospective father’s sperm, a process now disdained as “traditional” surrogacy. Today, the pregnancy would involve a third-party egg, so the surrogate would not be genetically related to the baby.”

13. CAN WE SEE THE BABY BUMP PLEASE? http://www.awid.org/Library/Can-We-See-the-Baby-Bump-Please 43 minute film about commercial surrogacy in India through the lens of gestational mothers (commissioned by Sama Resource Group for Women and Health, New Delhi)

14. As India continues to debate proposed legislation to govern ART in the country, medical malpractice and exploitation remain serious concerns in the current legal vacuum. See: ‘Birthing a Market’ – also by Sama Resource Group for Women and Health; includes highlights from their study on commercial surrogacy.

15. Made in India Feature length, award-winning documentary film by Vaishali Sinha and Rebecca Haimowitz about the human experiences behind the phenomena of "outsourcing" surrogate mothers to India.http://madeinindiamovie.com/

16. The Extraction Procedure • Suppress Ovulation • Hyper-stimulate Ovaries • Mature Eggs • Extract Eggs • (Repeat…)

17. Suppress Ovulation • Hyper-stimulate Ovaries • Mature Eggs • Extract Eggs • (Repeat…)

18. Normal: 1 egg produced • Hyper-stimulated: as many as 10 - 30 eggs produced • Suppress Ovulation • Hyper-stimulate • Ovaries • Mature • Eggs • Ovarian Hyperstimulation Syndrome (OHSS): Ovary sacs fill up with fluid and form cysts that can rupture. Sometimes, fluid leaks into the lungs and abdomen; rarely, blood clots can lead to a stroke, kidney damage and possibly death. • Extract Eggs • (Repeat…)

19. Suppress Ovulation • Hyper-stimulate • Ovaries • Mature • Eggs • Extract Eggs • Extraction procedure = minor surgery • Can be painful during the surgery, and for days afterward. • (Repeat…)

20. Long Term Effects • Risks to offspring? • Vision problems? • Ovarian cancer? ? • Breast cancer? • Uterine cancer? • Memory loss? • Bone and muscle pain? • Seizures?

21. Serious side effects reported by women who have used leuprolide acetate (Lupron™) include tremors, seizures, memory loss, and joint pain. Some women report that side effects do not go away even after they stop taking Lupron. www.lupronvictimshub.com

22. GnRH agonists (Lupron) interfere with the production of FSH and LH (work at the hypothalamus, a small gland located at the base of the brain) • GnRH antagonists (Ganirelix™ and Cetrotide™) completely block the effect of gonadotropin releasing hormone at the pituitary gland and thus create a more complete "down regulation" and reduction in gonadotropin levels.

23. “Fatal colon cancer in a young egg donor: A physician mother’s call for follow-up and research on the long-term risks of ovarian stimulation” by Jennifer Schneider, MD, PhD (Fertility and Sterility, 2008) Dr. Schneider appeared briefly on ABC NEWS, Nov 4 (a segment with Diane Sawyer): http://abcnews.go.com/WNT/video/egg-donors-rise-20783828

24. One voluntary registry based at Dartmouth-Hitchcock Medical Center in New Hampshire invites participation of all those involved in ART procedures, including women undergoing egg retrieval as donors. Infertility Family Research Registry www.ifrr-registry.org

27. OTHER POINTS ABOUT THE US: • Very little policy related to ARTs in general in the U.S. • No federal regulation of eggs • State regulation of eggs: • Indiana: prohibits sale of human eggs (allows reimbursement for expenses, lost wages, and up to $3,000 for recovery time) • Louisiana: explicitly prohibits sale of human eggs • Virginia: explicitly authorizes sale of human eggs

28. National Perinatal Association – new statement about ARTshttp://www.nationalperinatal.org/Resources/NT-MAR14-NPA.pdf 10. “Medical tourism” for the use of surrogacy should be discouraged. a. Citizens of another country seeking surrogacy in the United States should be discouraged. b. US citizens should be discouraged from seeking surrogacy abroad, which may be viewed as exploitation of women from that country. c. Surrogacy using a family member may be an acceptable exception.

29. NPA statement (cont.) 11. State regulatory agencies who license and provide oversight for collection and use of human tissues should provide the same level of oversight for sperm banks, the selling of human eggs and egg “donation.” Note: A bill permitting the selling of oocytes for in vitro fertilization and use in ART or research was recently vetoed by Governor Brown in California. This legislation would have made human eggs just another commodity to be bought and sold.

30. TAKING ACTION • Find new ways to challenge the misleading claims and ads of the IVF “industry” • Work with college students – the target of egg “donation” ads – to promote participation in the IFRR (OBOS just starting). • Raise awareness of the unique ways in which reproductive tourism exploits women and why people in different countries who care about these issues must think of policies and practices outside their own countries.

31. Sample Activities that Counter Hype and Misleading Promotion • Write a booklet for young women (similar to “Egg Donation: the Reasons and the Risks” by Kristi Lew) to counter the misleading hype. Put it online and use social networking to market it effectively to younger women • Engage young women in creating “counter ads” with cautionary statements about egg donation, coupled with promotion of the IFRR for women who are egg providers • Get copies of the primer, “Human Genetic Engineering” by activist Pete Shanks into high schools and into the hands of biology teachers. • Collect more accurate information about the informed consent process for egg donors as well as their actual experiences (www.weareeggdonors.comand others already doing this)

32. Cracked Open: Liberty, Fertility, and the Pursuit of High-Tech Babiesby Miriam Zoll (2013)

33. Concepts to pursue in raising these issues (ones that already have traction in the public’s mind) Examples: • Conduct of ethical research • Informed consent • Conflicts of interest • Need to stop medical practices with inadequate evidence basis