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Consent, safety of human egg donors is unclear
Compensation is another ethical concern
The primary ethical concern with human egg donation is that there are no long-term studies on the safety of this practice, according to Jennifer Lahl, president of The Center for Bioethics and Culture Network in Pleasant Hill, CA.
“If this was a classic IRB [Institutional Review Board] that was going to be started at Stanford or [University of California — Los Angeles], there would be so many safety hurdles just to move it into clinical trials,” she says. “We don’t have one long-term, peer-reviewed major study on what happens to these young women, short-term or long-term, who donate or sell eggs.”
Lahl says it’s not possible to obtain informed consent in this scenario. “How can you give informed consent on something you have never studied?” she asks. “I understand you can’t know everything about something to give informed consent, but the first step should be that we’ve done the studies to know this is safe, or not safe.”
Ethicists are concerned about what protections are in place to make sure egg donors aren’t exploited, coerced, or harmed, and how restitution would be provided if the donor is harmed. “We are all busy talking about informed content, how much money the egg donors should be paid, and if they should be paid. Nobody is saying, ‘We have to first answer the question: is this safe?’” says Lahl.
The major ethical concern is the lack of federal or systematic oversight, argues Lisa Campo-Engelstein, PhD, an assistant professor in the Alden March Bioethics Institute and the Department of Obstetrics and Gynecology at Albany (NY) Medical College. The UK’s Human Fertilisation and Embryology Authority regulates the use of gametes and embryos for fertility treatment and research. “In contrast, the U.S. is the Wild West when it comes to reproductive medicine,” says Campo-Engelstein. “We lack any real regulation in this field. There are soft policy guidelines from various medical and scientific organizations, but these don’t have teeth.”
While informed consent is always necessary to perform any type of medical procedure, there is a concern that without oversight, some clinics may not ensure that informed consent guidelines are being met. One way this could happen is if clinics minimize the medical and psychological risks because they are eager to obtain specific types of egg donors.
“There isn’t clear or conclusive research on all the medical and psychological risks associated with egg donation, in part because this is a neglected research area,” says Campo-Engelstein. “This may allow clinics to downplay or omit some of the very real risks associated with egg donation.”
Some view the high compensation that is associated with egg donation as coercive, especially toward economically disadvantaged groups, such as recent college graduates with high student debt. “If you are going to be in a clinical trial, you might make $50 or $100. These women are making thousands of dollars,” Lahl says. “Poor women in financial need will be the ones lining up to do this. It’s not going to be wealthy women.” A bill in California would make $10,000 the maximum amount that can be paid for one ovulation cycle.
“Women will take a lot of risk if they are going to be compensated a lot of money,” says Lahl. “As bioethicists, we need to be the ones standing in that gap and demanding that the studies be done and that the safety hurdles be met, and that we really need to back off from this compensation model.”
Lahl points out that organ donation wasn’t done until studies showed that people could live a long and healthy life with one kidney. “We don’t allow compensation for organ donation because we know that compensation corrupts,” she says. “Who would be selling their kidneys? It would be poor people and people who don’t have adequate health coverage, should they have complications.”
Lahl says that in contrast, egg donation is operating more like an industry than medicine, as it doesn’t ensure that subjects are protected and that everything possible has been done to ensure they aren’t harmed, or that the amount of money paid isn’t incentivizing people to do things that probably aren’t in their best interest.
“There is nothing in place for that. This is not how medicine operates,” she says, noting that organ transplant teams have a firewall in place, with the donor and recipients each having a separate medical team caring for them.
“The role of the bioethicist is not to be a rubber stamp for industry stakeholders, but to be an impartial spokesperson on the ethics of the matter,” says Lahl. “Unfortunately, some bioethicists are attached to major universities that have a vested interest in getting eggs to advance their science policy, or they may have fertility services. But our obligation is to people, and not our organization affiliations.”
Screening of donors
“Another big problem has to do with screening of donors,” says Campo-Engelstein. “Without any regulations, women can donate at multiple centers without any of the other centers knowing. This could be detrimental to women’s health and could lead to less diversity in the research sample.” A related concern is that without screening, donors may not be truthful about their personal and medical information.
In the case of egg donation for assisted reproductive technologies, inadequate screening also affects the intended parents. “If fertility clinics do not adequately screen their donors, then people who purchase an egg may not get what they signed up for. For example, a donor may lie about information or omit certain information, such as being a carrier for a particular disease,” says Campo-Engelstein.
One significant development is the American Society for Reproductive Medicine’s 2012 recategorization of egg freezing as established technology; it was previously considered an experimental technology. “It is becoming increasingly common, though it’s still quite rare, for young women to freeze their eggs as an insurance policy against age-related infertility,” says Campo-Engelstein. “If this trend continues, then it’s possible that egg donation may not be as common in the future as it is today, at least for age-related infertility.”
• Lisa Campo-Engelstein, PhD, Assistant Professor, Alden March Bioethics Institute, Albany (NY) Medical College. Phone: (518) 262-0239. E-mail: firstname.lastname@example.org.
• Jennifer Lahl, President, The Center for Bioethics and Culture Network, Pleasant Hill, CA. Phone: (925) 407-2660. E-mail: email@example.com.