Column: Paying women to donate their eggs for research is still a terrible idea
Proponents of a proposed law allowing women to be paid to donate their eggs for research say it’s all about equity.
Research subjects in other fields can get paid, they observe. And men can get paid for donating sperm. In California, it’s legal for women to be paid for eggs to assist couples undertaking fertility treatments. But it’s illegal for researchers to compensate women for their eggs beyond reimbursements for direct expenses, such as travel.
A research lobbying organization and Assemblywoman Autumn Burke (D-Marina del Rey) want to change that. The existing rules, Burke says, amount to “100% gender-based discrimination. This is my way of making sure that women are able to participate in [fertility] research and participate in an equitable way.”
If I’d known then what I know now, I wouldn’t have done it.
— Katie O’Reilly, former egg donor
This is not the first time this idea has come before the Legislature. Gov. Jerry Brown vetoed a similar bill by former Assemblywoman Susan Bonilla (D-Concord) in 2013, observing that the long-term risks of egg donation are not adequately known and that offering women a cash blandishment to do it was therefore improper. “Putting thousands of dollars on the table only compounds the problem,” he said in his veto message, concluding pointedly: “Not everything in life is for sale, nor should it be.” The proposal resurfaced in 2016 under Burke’s sponsorship but died when Brown signaled that he hadn’t changed his mind.
“Not everything in life is for sale, nor should it be.” That’s what California Gov.
Now, with a new governor in Sacramento, the proponents are trying again. Burke’s bill, Assembly Bill 922, passed the Assembly without a single “no” vote in May and the Senate Health Committee on June 20, by a 6-1 vote, so it’s likely to pass the Senate handily. Gov. Gavin Newsom thus may be the only person standing in the way of its becoming law. Newsom’s spokesman, Nathan Click, says the governor doesn’t weigh bills until they reach his desk. This one would put California women, especially low-income women who may be especially desperate for the compensation, at risk. He should kill it.
Let’s examine why.
Although proponents of the bill defend it with the gender equity argument, in reality it’s about supply and demand: Researchers have trouble obtaining human eggs if they can’t pay for them. The market is growing fast, because eggs are used today not merely for research on infertility but in stem cell and genetic engineering laboratories and firms.
At stake is not the fertility industry, where women are routinely paid for striking private and legal deals. In question is the growing demand for egg donations that are “taking place in the biotechnology market, and it’s largely profit-driven,” says Lisa Ikemoto, a bioethicist at UC Davis. “The types of protections we have for human subjects haven’t taken that into account. People who are not doing things like having drugs tested on them, but are providing cells and tissues, are not the kind of human subjects the laws were designed to protect.” As demand continues to grow, she says, those participants’ “financial need may overcome their sense of self-protection.”
As was the case in 2016, scant research exists on the long-term health risks of egg retrieval. Nothing in the bill would encourage more. There’s no funding, for instance, for a research program, or even to create a database of egg donors so their health can be tracked over time.
What is known, however, is that egg donors have been advised consistently that the medical risks of the procedure are low — they’re told that only 1% experience ovarian hyperstimulation syndrome, or OHSS, a condition that can befall women who take fertility medication to stimulate egg growth, as egg donors must do.
According to Diane Tober, who researches egg donors at UC San Francisco, that figure may severely understate the prevalence of OHSS. She says studies are suggesting that 3% to 6% of donors may experience severe OHSS at some point. “The research still needs to be done,” she says. “We still don’t have a lot of information on the impact on women’s health of egg donation either immediately or in the long term. But I’m seeing a much higher risk of complications than what’s reported in the literature.” In other words, assurances that the procedure is safe are based on a lack of knowledge.
In what may be the harshest enforcement order yet against a clinic pitching unproven and potentially harmful stem cell “treatments,” a federal judge has ordered a Florida-based stem cell firm to cease offering the treatments or face thousands of dollars in fines.
The procedure is not simple. Consider the experience of Katie O’Reilly, an Oakland magazine editor who underwent the procedure in 2009, at the age of 25, because she was broke and needed the $8,000 fee paid by a fertility clinic on behalf of a couple trying to have a child. “If I’d known then what I know now,” she wrote in a 2015 article for BuzzFeed, “I wouldn’t have done it.”
The routine for O’Reilly, which is standard, required her to self-inject hormones twice a day for up to two weeks to stimulate egg production, along with another hormone to stave off ovulation until her eggs could be harvested. Then her eggs were harvested by needle under general anesthesia. “They said there were virtually no risks,” she told me.
After the procedure, O’Reilly experienced multiple medical problems — endometriosis, fibroid breast tumors requiring biopsies, painful menstrual cycles. She’d been healthy before, but her doctors are loath to connect her subsequent conditions to her egg donation. “They just say there’s no way of knowing,” she says. Nor did the fertility agency that recruited her show much concern, though it had been extremely solicitous prior to the harvesting. “It was about making sure they got the goods, and after that point, you’re sort of dispensable.”
The sponsor of AB 922, the American Society for Reproductive Medicine, glosses over that aspect of the matter. The ASRM’s pitch to legislators bristles with irrelevancies and misleading claims. A letter the association sent May 30 to Sen. Richard Pan (D-Sacramento), chairman of the Senate Health Committee, asserts that women are “capable of informed decision making as to the risks of compensated participation in research,” as though the ban on payment is just another form of paternalistic condescension.
The letter says that “fairness” requires that women be compensated just like men providing sperm for research. It says that the ban on compensation embodied in Proposition 71, which created the California stem cell program, was based on “claims that ovarian stimulation is carcinogenic,” and compared those claims to assertions that abortion causes breast cancer or vaccines cause autism.
The University of California regents are wrestling with a question that should have an easy answer: Should they approve an “affiliation” between UC San Francisco, one of the leading teaching hospitals in America, and Dignity Health, a Catholic hospital chain that openly discriminates against women and LGBTQ patients and requires its doctors to comply with religious directives, some of which run counter to medical science and ethical practice?
Those comparisons to definitively debunked claims about cancer and abortion and vaccines and autism are unworthy of any self-respecting research organization. There are many open questions about the short-, medium- and long-term health consequences of egg harvesting, including the effect on a donor’s reproductive system and fertility. Although some studies have been reassuring about the carcinogenic effects of the pre-donation hormonal treatments, the issue is by no means closed, as a 2014 scientific survey reported.
Nor can the egg donation procedure be compared with the process of harvesting sperm. At the risk of seeming indelicate, it should be obvious that unlike egg donors, under normal circumstances, sperm donors don’t have to undergo an invasive surgical procedure or self-administer daily injections of hormones.
The ASRM and Burke both treat egg donations for research and donations to help couples achieve fertility as essentially the same. They’re wrong. California doesn’t regulate payments to donors for fertility treatments, including those of strangers, because they tend to be private contracts. But it does subject research on human subjects to strict standards requiring informed consent from the participants and discouraging blandishments that could lead people to agree to procedures that are not in their best interest.
Trump administration officials apparently are prepared to go to their graves insisting that they did everything possible to protect Americans with preexisting medical conditions, even as they pull out the stops to undermine those protections.
“The process of asking people to provide any kinds of cells and tissues for payments depends on income inequality,” Ikemoto says. “In the egg market, it depends on race inequality as well — most people who are screened for eggs in the fertility market are white, because that’s where the demand is. In the research setting, that may be different. That’s a serious concern.”
ASRM and Burke make much of the fact that California is one of only three states that ban payments to those who donate eggs for research (Massachusetts and South Dakota are the others). But the National Academy of Sciences opposes payments for egg donors beyond direct expenses in stem cell research, so that financial incentives won’t interfere with donors’ voluntary consent. (The NAS opposes payments for sperm donors, too.)
Financial incentives appear to be the key to attracting donors, which should give pause to supporters of the legislation. “It’s clear that money is the primary incentive,” says Emily Galpern, a consultant for the Berkeley-based Center for Genetics and Society, which opposes the bill. “When anyone tries to recruit donors without payment, women won’t do it.”
Burke told me that she has undergone egg harvesting four times for her own fertility treatments without problems. “You’re telling me that I don’t have the decision-making ability as a grown woman to make this decision for myself?” she says. “I don’t buy it.”
Medical regulators have been warning that the downside of unproven stem cell treatments isn’t merely that they won’t work, but that they can be life-threatening.
Yet one of the imperatives of government, including the government of which Burke is a member, is to protect people from being enticed into making decisions without enough information to protect themselves. How can any woman give informed consent to a procedure in which there’s so little information about the consequences?
Burke told me, “there’s very little data to show that this process has any detrimental effects.” But that won’t do. Burke’s personal experience is hardly the last word, and in fact there are enough reports of possible detrimental effects to generate professional calls for more studies. The reason we don’t have more data is that not enough research has been done.
Burke could do egg donors a solid service by rewriting her bill to mandate and fund studies of the effect of the hormones that must be taken by donors. The research community has been widely criticized for gender bias — both for inadequate funding on and inadequate attention to medical issues affecting women; this would be an opportunity to help redress the imbalance, at least in this one field.
Burke also should insert real medical safeguards for donors. Burke’s bill requires that research sponsors provide donors with “coverage for medically appropriate medical care that is required as a direct result of the procedure.” But the bill doesn’t define what care would be “medically appropriate,” how to define “a direct result of the procedure,” or how long the coverage should last. Burke told me she’s content to leave that to the judgment of the institutional review board, or IRB, overseeing the research.
But that’s cold comfort for donors. IRBs at creditable research institutions may act responsibly, but it’s not uncommon for fly-by-night IRBs to offer their services for hire or even for researchers to set up themselves as an IRB. Even at big universities, research funds are scarce, so they may have an incentive to keep their healthcare commitments to egg donors narrow to save money. What’s to keep them from saying: “Your endometriosis? Not our problem.” Specific coverage requirements should be part of this measure.
The truth is that the egg donor market is an unregulated Wild West, and it’s only going to get wilder if limits on payment to donors are eliminated. Asked what advice she would give prospective egg donors, O’Reilly says: “I would tell them to look into all the anecdotal evidence they can find, and not take at face value whatever they’re being told.”
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