To Pay or Not to Pay
Imagine two women sitting in a waiting room -- one is a store clerk, and the other is an investment banker -- preparing to donate their eggs for a particular type of stem cell research.* There are some who think that payment could coerce women, especially those who are low-income, to undergo the invasive procedure.** Marcy Darnovsky, the executive director of the Center for Genetics and Society, says that restricting payment can help prevent "the emergence of a market in which predominantly poor women are the ones who wind up selling their eggs."
Others insist that women are perfectly capable of weighing their options, and that egg donors should be financially rewarded for their time and trouble. UC Hastings law professor Radhika Rao contends:
[E]veryone else involved in the production of human embryonic stem cells is entitled to compensation. The researchers who invest intellectual capital and the companies and universities that invest financial capital will surely share in any profits ... so why not those who provide the human capital in the form of their own bodies?
The policy landscape reflects these different perspectives about egg donor compensation. The National Academy of Sciences established guidelines that suggested limiting payment to direct expenses. But in most places, ethics boards and lawmakers are still trying to figure out how to balance women's safety and autonomy with concerns about an "egg shortage" that threatens to stall research.
In California, where voters supported a "right to stem cell research" in 2004, the state assembly is now considering a bill, A.B. 926, that would allow researchers to pay egg donors similar rates to the fertility industry. If passed, the new law would repeal the 2006 reproductive health and research bill S.B. 1260, which restricts payment to direct expenses. S.B. 1260 was sponsored by former State Sen. Deborah Ortiz (D-Sacramento), widely known as a champion of embryonic stem cell research and women's health, and was supported by a broad coalition of women's health advocates.
California Assemblywoman Susan Bonilla (D-Concord) is sponsoring the new bill that would reverse the current restrictions on payment. "This is the only kind of research that goes uncompensated," said Bonilla. "I think women are able to decide for themselves if they want to participate in a clinical trial."
Nevertheless, it's crucial to point out that egg donors are not the same as traditional "research subjects" in a clinical trial, because scientists are not studying donors' reactions to medical treatment or their health outcomes. Instead, women are supplying the biological material for further experimentation. What's more, payment may heighten the need to retrieve as many eggs as possible per cycle, so researchers may unwittingly jeopardize donors' health.
If Bonilla is successful, California will join New York, which made headlines in 2009 by becoming the first state to allow public funds to be used for donor compensation. Payments can be up to $10,000, but this only applies to "fresh" eggs extracted solely for research, not to leftovers from the clinic. In what's likely a reference to California, the Empire State Stem Cell Board says that "experiences in other jurisdictions indicate that lack of reasonable compensation to women ... has created a significant impediment to such donation, limiting the progress of stem cell research."
A Right to Research Without a Right to Health?
But while much attention is placed on creating a supportive and healthy regulatory environment for researchers (including $3 billion in California public bonds), policies that require the collection of safety data following multiple egg extraction are nonexistent. Women of all social strata, store clerks and bankers alike, are given a partial, mostly rosy, picture of egg donation. A National Academy of Sciences report found:
Although more than a million IVF cycles have been performed in the United States over the past 20 years, and although there are registries that keep track of the various reproductive outcomes, such as the number of eggs retrieved and the number of children born, there are no registries that track the health of the people who have taken part.
Diane Beeson, a medical sociologist and the associate director of the Alliance for Humane Biotechnology, is among those who oppose the laissez-faire approach to egg donation for research in New York and possibly California if A.B. 926 passes. Beeson testified before the United States Congress, cautioning:
As a society, we are at a turning point in our relationship to science. We are being asked to make women the servants of biotechnology rather than insisting on a biotechnology that promotes the well-being of all people. ... Until we understand more fully its human costs, I strongly urge your support for a moratorium on [somatic cell nuclear transfer].
Taking a different approach, UC Berkeley professor Charis Thompson compares egg donation to "other kinds of physically demanding service work," arguing for a "salary negotiation between the state agency (or relevant employer) and the donor." This, she contends, is a "sensible and dignified recognition of [the donor's] work, time, and effort." And instead of refusing compensation to women, Thompson suggests that we "direct our efforts to understanding and minimizing" the risks.
Indeed. Now more than ever, we must redouble our efforts, because the market in eggs appears to be expanding from private reproduction to public research, and increasingly overseas, if the surrogacy industry is any indication of how "cheaper" women become a reserve army of bio-labor in less regulated regions. As I explain elsewhere, when we view egg donors through a strictly bioethical lens -- as individual research subjects -- our attention is drawn away from the collective experience of women whose health often takes a backseat in policy decisions. (But not explicitly, of course. With enough spin, the backseat can be construed as an autonomous and empowering space -- where no one checks that the seatbelts work!)
Self-Regulatory Rabbit Holes
In the case of A.B. 926, the American Society for Reproductive Medicine (ASRM) is among those pushing this pro-payment policy for California researchers. Yet the ASRM doesn't require fertility doctors to track the long-term health of egg donors. Instead, it promotes "professional self-regulation" -- which leads us down a rabbit hole where elite women are often getting paid far and above the recommended guidelines for the fertility industry. Not to mention the fact that the company that manufactures Lupron, a drug used to suppress ovulation prior to multiple egg extraction, is on the ASRM's corporate council. Lupron is not approved by the FDA for this purpose, and women across the country have reported serious health complications associated with the drug. A case of too many eggs in one corporate basket?
According to Our Bodies Ourselves executive director Judy Norsigian, "in the absence of long-term safety studies ... a national registry for problems encountered while using these drugs is an absolute must." The volunteer-based Infertility Family Research Registry is a worthy first step, as is the founding of the first self-advocacy group for egg donors. But there is still much we can do to ensure that women have the necessary information and support as they decide whether to undergo egg extraction.
In the end, if we're going to support a "right to stem cell research," then we need to guarantee a right to health in the form of serious investment in egg donor safety. As it stands, we're crafting a pro-science policy arena that's not necessarily pro-health.
*Somatic cell nuclear transfer (or SCNT), otherwise known as therapeutic cloning, is distinct from other types of stem cell research. (Click for more info.) Elsewhere I discuss how induced pluripotent stem (iPS) cells and endogenous pluripotent stem (ePS) cells relate to the issues raised above.
**One Institutional Review Board (IRB) for Advanced Cell Technology in Massachusetts cited "high blood pressure; fluid accumulation in the limbs; formation of blood clots which potentially could be dislodged from the involved vein or artery causing damage to vital organs such as lungs, heart or brain" among many other risks.