Ethical Questions on Egg Donation June 24th, 2015 Ana Lita, Ph.D. Global Bioethics Initiative Executive Director GLOBAL BIOETHICS INITIATIVE (GBI) GBI is a non-profit organization co-founded in 2011 by Ana Lita, Ph.D, and Charles Debrovner, M.D. 777 UN Plaza, 5th Floor New York, NY 10017 www.globalbioethics.org alita@globalbioethics.org MISSION AND VISION Global Bioethics Initiative (GBI) is dedicated to fostering public awareness and understanding of bioethical issues, and to exploring solutions to bioethical challenges. Focus Issues • Organ Transplantation and Trafficking • Reproductive Rights • Population Aging/End of Life Health Care International Bioethics Summer School For more details, check our program’s website: www.summerschool.globalbioethics.org VIDEO CLIPS Basics of Egg Donation Egg donation is a product of in vitro fertilization (IVF) technology (a) Women's ovaries are stimulated with hormones or hormone-mimicking drugs to produce multiple mature eggs b) Eggs are retrieved from ovarian follicles via a transvaginal needle aspiration under ultrasound guidance Video Clip— Egg Retrieval: https://www.youtube.com/watch?v=i4vLRZPF8GQ Differences Between Egg Donation and Sperm Donation Egg donation, compared to sperm donation, is: • medically more complicated • significantly more invasive • less amenable to storage than sperm are, although a number of human egg banks have recently sprung up in the U.S. and U.K. • compensates on a much larger scale (up to hundreds of thousands of dollars per donation cycle) What are the risks of Egg Donation? Complications are uncommon and usually limited to standard surgical risks of infection, bleeding, and damage to surrounding tissues. The most serious risk is ovarian hyperstimulation syndrome (OHSS). Ovarian Hyperstimulation Syndrome • occurs after using injectable hormone medications to stimulate egg development during the preparation period for egg donation • ovaries become swollen and painful, fluid collects in the abdomen • other symptoms include rapid weight gain, abdominal pain, vomiting and shortness of breath • OHSS will usually resolve itself on its own, but can be aided by draining fluid from the abdomen and administering painkillers Who benefits from egg donation? • • • • Women with a variety of genetic diseases, various illnesses, damaged ovaries, or born with no ovaries at all Gay couples Women older than typical child-bearing age Biomedical Research Advertised Compensation for Egg Donation in the United States 1. The country you are in: • In the United States, egg donors are legally allowed to be compensated for the time spent donating, travel arrangements, and potential damage • Prices can range from a few thousand dollars to more than $250,000 as was advertised in a classified ad found in a Princeton campus newspaper a few years ago (right, a similar ad run at Columbia University) In the USA 2. It Depends on the region you are in • Within the U.S., there is regional variation in prices • New York, Chicago, Los Angeles, Houston, Washington DC, Boston and Seattle pay egg donors more than smaller ones like Birmingham and Louisville. • In Ohio, some egg donor programs pays between $3000 and $7000 per cycle. • In Boston, Massachusetts, donor programs pay $5,000 per cycle. • A Houston IVF clinic pays between $5,000 and $8,000 per cycle. Advertised Compensation for Egg Donation in the United States Advertised Compensation for Egg Donation in the United States • Free medical exam, genetic and infectious disease screening. • Health Insurance provided for procedure. • Repeat eligible donors may donate up to six times with medical clearance. • College or some college education required. If you are between the ages of 21-32, legal to work in the United States, and able to commute to our clinic on a daily basis you may be eligible!! In the USA 3. Does the egg donor agency abide by the ASRM code of ethics? • The ASRM (American Society for Reproductive Medicine) sets guidelines for how much egg donors should be paid. In their ethics code, they state that: “Although there is not consensus on the precise payment that oocyte donors should receive, at this time sums of $5,000 or more require justification and sums above $10,000 go beyond what is appropriate.” • Donating eggs through an ASRM-affiliated egg donor program or IVF clinic essentially means that the egg donor will make between $5,000 and $10,000, regardless of other factors. “The United States is the Wild West of reproductive technologies” – Art Caplan Egg Donation in Other Countries • Norway and Germany – banned donating eggs, but not sperm • Sweden – requests a stable relationship for at least a year to receive IVF • Switzerland – only married couples may receive IVF • Austria and Italy – banned egg and sperm donation • Czech, Slovak, Spain, France, Israel, Belgium, Ghana – allowed • New Zealand and Romania – egg donation is done for free, without any monetary compensation. This is sometimes called “egg sharing.” Egg Donation in Other Countries • Czech Republic – Price: 4.500 EUR – GYNEM - Fertility Clinic – Prague • Israel – Price for 6 mature eggs is 6.000 EUR • Romania – No compensation/”egg sharing” – 30 Israelis Arrested Over Human Egg Trafficking In the UK • The Human Fertilisation and Embryology Authority (HFEA) is the UK's independent regulator overseeing the use of gametes and embryos in fertility treatment and research. • The HFEA licenses fertility clinics and centres carrying out in vitro fertilisation (IVF), and other assisted conception procedures and human embryo research. In the UK • • • • • Since 2006, anyone who donates either sperm or eggs has received travel expenses & compensation for loss of earnings of up to £61.28 a day. Limited compensation: No more than £250 in total for each cycle of donation. In 2012 IVF waiting lists went down as egg donors got 'pay' rise Donor compensation is limited to £750 per cycle for egg donors, “due to recession” Paying sperm donors £35 for each visit to a clinic. Objections To Egg Markets Developments in biotechnology have a profound effect on women, particularly as they relate to the growing market for human eggs. Three potential objections (with rejoinders where possible) (a) the potential for economic coercion (b) the potential for commodification (c) the problem of unquantified risk Objection 1: Economic Coercion • Such large amounts of money could inappropriately compel financially vulnerable women into donating their eggs when they otherwise would not (i.e. collegiate women with exorbitant educational loans) Age Biotechnology EconomicCutting Coercion in Poorer Countries • Limited economic opportunities make financial compensation an appealing incentive • GlobalARTusa, for example, was a private fertility clinic based in Romania that had internationalized the egg donation market • Couples from anywhere in the world selected donors for physical and personality characteristics, educational background, health status, etc. • The cost was significantly reduced for international customers (only a few thousand dollars per cycle of eggs), and the monetary compensation was very low for Romanian women who donated their eggs (about $250 per harvest) Rejoinder 1: Paternalism and Reproductive Freedom • There is an underlying belief that egg donors are forced to make decisions that are ultimately against their best interests. This unnecessary paternalism unduly limits the reproductive (and, in this case, financial) freedom of women—especially poor women • If high monetary “compensation” to egg donors constitutes coercion, then many bright young adults are being “immorally” coerced into becoming lawyers, doctors, bankers, and other types of well-paid professionals • Egg donation is a viable option for many women who have few options However… Large amounts of money, in combination with limited decision-making abilities, create a situation in which it is unethical not to offer these women protection and put egg donation and its impact on women’s health under real scrutiny. Objection 2: Commodification Generally, commodification arguments say something to the effect of: 1. If we allow financial compensation to accompany, albeit indirectly, the donation of body parts, then we are essentially treating those parts like commodities 1. Treating body parts like commodities is a gross affront to the intrinsic value of human beings, which leads to treating women as means to an end (not as ends in themselves) 1. The latter is unacceptable, and thus financial compensation is unacceptable when associated with the transfer of body parts 1. Therefore, financial compensation for egg donation is unacceptable ***In addition, proponents of this argument posit slippery slopes if financial compensation ever becomes standard practice for body parts. Rejoinder 2: Commodification • The argument assumes that being human is essentially defined by one's body parts • What makes somebody human is intrinsically aligned with “who they are,” their personalities, social roles, conscience, etc. • Women who have had their ovaries removed feel that they are still women—despite the fact that they can no longer produce eggs • If so, it is unclear why financial compensation for egg donation should pose such threat to the intrinsic value of women as human beings ***Worries of commodification are relevant but do not outweigh the interests of childless, infertile couples. Objection 3:Unquantified Risks vs. Benefits Benefit for infertile couples: • The chance to have children and thus establish a family Risks for donors: • Dangers associated with the surgical removal of eggs • Dangers associated with ovulation induction, i.e. ovarian hyperstimulation syndrome (OHSS) Unquantified Risks and Informed Consent 1. Although the risks associated with ovulation induction have been covered in medical literature, but perhaps there is a lack of such coverage in popular literature. This: (a) imposes limits on the potential egg donors' abilities to understand the procedure (b) allows fertility clinics to skirt their obligations to obtain informed consent 2. Providing donors with information about risks of ovulation induction is essential to obtaining informed consent ***The ethical responsibility of IVF clinics to ensure informed consent is made especially crucial if the recruitment of egg donors occurs among populations already vulnerable for socioeconomic and other reasons. Informed Consent • Informed consent from egg donors would mean they are aware of the associated dangers of ovulation induction and surgical removal of eggs • Obtaining informed consent for any medical procedure has been inadequate for decades • It continues to be a problem that plagues the medical profession Current Situation in the US • • There is no consistent oversight of fertility clinics operating on U.S. soil Professor Art Caplan, chairman of the Department of Medical Ethics at New York University Langone Medical Center, has dubbed the United States the “Wild West of reproductive technology.” Current Situation in the World • There is no agency in the U.S. comparable, for example, to the UK Human Fertilisation and Embryology Authority, which oversees licensure, accreditation and operating practices of British fertility clinics. (http://www.hfea.gov.uk/) • Several Western nations such as Italy, Norway, Canada, and the UK, have enacted strict legislation prohibiting some, or all, forms of gamete donation • There is a lack of international standards regarding practices and policies on egg donation • This situation elicits fears about whether women are being treated with respect and dignity and calls into question the fertility industry as a whole Reproductive Tourism— A Cousin of Transplant Tourism • “Reproductive tourism” the practice of traveling to another country to receive specific fertility treatment because of legal restrictions in home country, or to obtain the sought procedure or gametes at a lower price (Pennings 2004) • “Reproductive exile” refers to women forced to leave their home countries to access safe, effective, affordable, and legal fertility care. Their choice to use assisted reproductive technologies is voluntary, but their travel abroad is not • “Transplant tourism” is the practice of traveling to another country to obtain organ transplantation through commercial transactions because of organ shortages/long waiting-lists in home country Health Risks of Egg Donation The Need for a Donor Registry • There is currently no egg donor registry in the U.S. Consequently, there can be no long-term follow up of: • possible health effects, or long-term risks of egg donation • There is a national registry for kidney donation • donors can participate in research studies and it is therefore possible to determine long-term risks and effects Future Directions for Egg Donation • To adopt international standards to govern egg donation, which could eliminate disparities • To increase the available data on the effects of ovary-stimulating drugs • To decrease unquantified risks associated with egg donation and promote informed consent • To codify what does and does not constitute commodification ***At the very least, the mere exercise of developing such standards will draw much needed attention to this important area of biotechnology and bring the consequent issues to the forefront of public attention In the US: Donors increasing in number during recessionhttp://www.youtube. com/watch?v=DRxTCRD-yM&feature=related Romanian mother at 66http://www.youtube.com/w atch?v=Q9rtWZrBeV4 Woman gives birth to quadruplets at 65 https://www.youtube.com/wat ch?v=Nl2fwy16xiM Thank You for Your Attention