by Marcy Darnovsky, Ph.D. and Susan Berke Fogel, J.D.
My is publishing a series of posts on egg donors and the ethical, legal, and health aspects of egg donation. Also read: one woman weighs the risks of donating her eggs to a friend, and a new group forms to share the perspectives of egg donors.
Last month, California Gov. Jerry Brown vetoed a bill that would have allowed researchers to pay women for having their eggs harvested and retrieved. His move was warmly welcomed by women’s health and public interest groups including Myhags, National Women’s Health Network, Pro-Choice Alliance for Responsible Research, Alliance for Humane Biotechnology and Center for Genetics and Society. (Disclosure: see author affiliations.)
Echoing the longstanding concerns of many progressives about the serious risks of egg retrieval, Brown’s brief but eloquent veto message recognized that “in medical procedures of this kind, genuinely informed consent is difficult because the long term risks are not adequately known.” He also acknowledged that low-income women would face disproportionate temptations to discount the risks. “Putting thousands of dollars on the table only compounds the problem,” Brown wrote.
The vetoed bill, AB 926, was sponsored by the fertility industry’s trade organization, the American Society for Reproductive Medicine. It was supported by several mainstream women’s organizations, and breezed through the Democratic-dominated legislature. Ironically, as Brown noted, the law that this bill would have overturned was approved by near-unanimous votes in both houses.
That 2006 measure established protections for women who provide eggs for research and limited payments to reimbursement for expenses connected to the egg retrieval procedure. “After careful review of the materials which both supporters and opponents submitted, I do not find sufficient reason to change course,” Brown wrote.
The governor’s veto appears to have caught the bill’s supporters by surprise, and their response has been strongly negative, to the say the least. California NOW’s Facebook page asked “WTF Jerry Brown?” and went on to claim that Brown’s move was “consistent with his Jesuit Catholic Monk values” and that “he ignores science and women’s health in favor of the Catholic Conference’s beliefs that women getting compensated equally with male donors is high tech prostitution!”
Along similar lines, another supporter penned a rancorous Huffington Post piece with a headline that accused Brown of treating women like “children and the mentally handicapped.”
Oddly, most of the attacks on the governor — and some media accounts of his veto — have been silent about the existence of progressive and pro-choice opposition to AB 926. Some flatly mischaracterize the opposition as being solely religious and anti-choice. Others briefly acknowledge that pro-choice groups and individuals opposed the bill but describe them as part of a strange-bedfellows “coalition.”
There was indeed a coalition but it did not include any anti-choice groups. Rather it brought together diverse organizations including, besides our groups, Alliance for Humane Biotechnology, Black Women’s Health Imperative, Breast Cancer Action, and Friends of the Earth.
In addition to misrepresenting the nature of the opposition to the bill, its supporters largely failed to actually address the arguments against paying women to provide eggs for research. Although the state’s major newspapers published thoughtful op-eds raising questions about the issue (opinion pieces appeared in the Los Angeles Times, San Francisco Chronicle and Sacramento Bee), proponents of paying women to provide eggs for research tended to repeat their talking points rather than answer the questions that were raised: Do we have sufficient information about the long-term effects of egg retrieval to ensure the health and future fertility of the women providing the eggs? Is there even enough information to permit “informed” consent? Might the payments for eggs be coercive to low-income women? Can researchers get the supply of eggs they need without resorting to financial incentives?
AB 926 supporters argued that paying for eggs for research is a matter of “equity for women,” which seems to mean several different things at once. One is that women should be paid for providing eggs because men are paid for providing sperm. UC Berkeley medical anthropologist Nancy Scheper-Hughes pointed out the fallacy of this analogy: Selling sperm and selling eggs are totally different matters, she wrote: “One is pleasurable and safe, the other is a complicated and invasive procedure.”
AB 926 supporters also argued that providing eggs for research should be compensated because it is analogous to enrolling in clinical trials, for which healthy people are paid. This too is misleading. In clinical trials, scientists study their subjects to determine the effects of a drug or procedure on the people taking the drug. But scientists do not study the effects of egg-harvesting drugs and procedures on the healthy young women whose eggs they want for their experiments. The object of their interest is only the eggs, not the women.
Finally, AB 926 supporters pointed out that people who need young women’s eggs for their own fertility treatments pay for them, and asked why researchers shouldn’t be permitted to do the same. That brings us to the core question: Should we expand the market in human eggs?
Given that many women who have undergone egg retrieval in the fertility context have experienced serious complications, and that the procedure’s risks are still grossly understudied, we believe that adequate safety data must be collected before we can have a sufficient evidence base on which to make that decision. A well-designed, multi-center prospective trial is long overdue.
AB 926 supporters claimed that they occupy the pro-science and pro-research camp, and that anyone who opposes them (including Gov. Brown) is “anti-science.” But they have had nothing to say about the well-documented short-term egg harvesting risk of ovarian hyper stimulation syndrome, which can cause organ damage, ovarian rupture, and in rare instances death. They also ignored evidence that the drugs used in egg retrieval may be associated with higher rates of cancer and infertility, and the lack of follow-up studies to ascertain what the risks really are.
In 2007, a report by the prestigious Institute of Medicine concluded that too little research had been done on egg retrieval. It noted that with “read data it will be possible to quantify the various risks of oocyte (egg) donation much better than can be done today and to put numbers to the risks that a donor may face.”
Not much has changed since then. But those who believe that it’s fine for women to “work” as egg providers seem indifferent to understanding the occupational hazards it entails, and to investigating what might be done to minimize the dangers.
Currently, New York is the only state that explicitly authorizes payments beyond reimbursement for women’s eggs for research. The practice is prohibited in far read countries than allow it.
We at the Center for Genetics and Society and the Pro-Choice Alliance for Responsible Research have been calling for years now for clinical studies that look at the long-term health effects of retrieving eggs, for both fertility and research. The American public assumes that medical procedures and drugs have undergone careful study and that treatments have been proven safe and effective before being widely used.
Let us be clear: To date, we do not have well-designed, prospective studies of the effects of egg retrieval. Let us start collecting that information and until we have it in hand, let’s rein in the market for eggs instead of expanding it. Doing so will benefit not just the young women who might provide researchers with eggs, but also the many women who undergo egg retrieval for their own or other people’s fertility treatments.
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This guest column was originally published at Huffington Post and has been reprinted with permission.
Marcy Darnovsky, Ph.D., is Executive Director at the Center for Genetics and Society, a public affairs organization working to encourage responsible uses and effective societal governance of reproductive and genetic technologies. She speaks and writes widely on human biotechnologies, focusing on their social justice, human rights, health equity, and public-interest implications.
Susan Berke Fogel, J.D. is the co-founder of the Pro-Choice Alliance for Responsible Research (PCARR), working on cutting edge issues at the intersection of human genetic biotechnology and women’s health and rights. She is also the Director, Reproductive Health for the National Health Law Program, where she is a national expert on reproductive health law, low-income health programs and religious restrictions in health care.
Young women are increasingly being recruited to donate eggs for infertility and research purposes, though numerous health questions remain unanswered. Myhags is calling for the creation of a mandatory health registry to facilitate long-term tracking and studies to better understand the risks of egg extraction. Please support the Petition for Human Egg Extraction Health Registry & for Warnings on Ads and Notices Seeking Egg Donors, started by My, the Alliance for Humane Biotechnology, Pro-Choice Alliance for Responsible Research, and the Center for Genetics and Society, and endorsed by other organizations.