The United Kingdom’s House of Commons and House of Lords have passed a bill that will allow the creation of “three-parent embryos,” which contain genetic material from two women and one man. Now that the bill has passed both houses, the Human Fertilisation and Embryology Authority (HFEA) will put forth guidelines so that fertility clinics in the United Kingdom will be able to apply for licenses that will allow them to offer this procedure to women who carry mutations in their mitochondrial genes that may lead to mitochondrial diseases.
In theory, this procedure will create human embryos that are free from mitochondrial defects, which can lead to serious diseases after birth. We are led to believe this is a medical breakthrough that will prevent tragic, inheritable, genetic diseases. We are also assured that this is as simple as cutting out the nuclear DNA from an egg with mutated mitochondria and pasting it into an egg with healthy mitochondria.
Some supporters of this technology say it’s just like swapping a bad car battery for a new one. But of course this technology is much more complex, and with its medical complexity comes ethical complexity. Make no mistake: this is the genetic engineering of children through nuclear transfer technology and germ-line modification.
Medical Risks and Ethical Concerns
Although most press coverage has praised this new medical development, some are pointing out its problematic nature. Stuart Newman, professor of cell biology at New York Medical College, has written on the deceptive labeling of this new technique. In a piece published here at Public Discourse last year, Maureen Condic, who is a professor of neurobiology and anatomy, analyzed both the science and the ethics of three-parent embryos. Condic points to the obvious ethical problems of “eugenic cloning,” destructive embryo research, and human experimentation on embryos, but she and other scientists and ethicists know that there are huge safety concerns regarding genetic manipulation at the level of germline intervention that have not been answered in animal or human models.
Once changes have been made to the germline, these changes will not only affect the developing embryo, but will have lasting effect on any future children born from this modified human embryo. Professor Paul Knoepfle, a stem cell and developmental biology researcher at the University of California, Davis wrote in his open letter to the UK Parliament:
While a recent FDA hearing by an advisory Committee here in the US took what I view as an appropriately cautious approach to 3-parent technology, I am concerned that the UK may soon approve this technology without first seeing evidence that the potential risks and problems have been addressed successfully in concrete ways. I would respectfully ask, “what’s the rush?”
While Condic mentions the need for donor eggs in the three approaches used for this technology (maternal spindle transfer, pro-nuclear transfer, and embryo cell nuclear transfer), no mention comes up of the risks to healthy women whose eggs will be needed.
One headline, right after the House of Commons vote, says it all: “Egg donors needed to help with pioneering Newcastle medical technique.” The story begins, “Doctors on the brink of making medical history are urging North East women to donate eggs in the hope they can save as many lives as possible.”
Fortunately, Philippa Taylor, writing from within the UK, raises concerns regarding the health of the women who will be asked to help. She also highlights the schemes that will be employed to entice women to “donate” their eggs:
In the UK most donor eggs are provided by women undergoing IVF, who can donate half their eggs in return for subsidised private treatment or, in the case of NHS patients, for an additional cycle of treatment. However it is also permitted to reimburse altruistic egg donors for inconvenience and lost earnings up to £750 (roughly $1,100 USD) per cycle.
This means that as an incentive to donate their eggs for research, infertile women who are patients will be offered discounted IVF treatments. Alternatively, women who are not patients will receive monetary compensation.
There are important questions that need to be carefully considered regarding any medical policy that involves offering financial and other incentives. For example, we have a shortage of organs available for transplant. What would it look like if we started offering patients a discount on medical treatment in exchange for donating a kidney to someone on a waiting list? What happens when people make decisions about their health and health care because of financial incentives? We know, from considerable research, that money causes people to operate in ways that go against their own best interests. Indeed, the more a person needs money, the more risks he or she is willing to take.
The Need for Informed Consent
I am often asked, isn’t egg donation like organ donation? In organ donation, the donor assumes risks to his or her own health in order to save another person’s life, someone who is sick and dying. Like organs, eggs are a non-replenishable resource. A woman is born with all the eggs she will have, unlike sperm, which is a replenishable resource. And for all the hundreds of thousands of eggs a woman is born with, only a few hundred will ever go through ovulation. However, the purpose of egg donation is importantly different, and therefore, it is not analogous to organ donation.
In egg donation, the recipient of the egg donor’s gametes is not sick or unhealthy—not a patient, but a consumer, purchasing a woman’s eggs for reproductive or research purposes. Society rightfully condemns selling or paying for organs. This prevents abuses and saves lives. In contrast, the large sums of money offered to egg donors exploit their need for money. Simply put, financial incentives impede freely given, truly informed consent.
The risks from egg donation are real. In the short term, the risks include stroke, organ failure, infection, cancer, loss of fertility, and, in rare instances, death. The most serious and immediate risk is Ovarian Hyperstimulation Syndrome (OHSS). The longer term risks of cancer or damage to fertility are largely unknown, since there is no tracking nor have long-term studies been done on healthy egg donors. Just as we do in the US, the UK suffers from poor tracking of egg donors. As a result, longer-term risks remain a mystery.
This lack of tracking is a serious problem. Philippa Taylor points to current HFEA policy and states that the “government admits that there is no definitive data on women who have been hospitalized for OHSS after egg donation.” The policy in the UK is that
fertility clinics are only required to report instances of ovarian hyperstimulation syndrome (OHSS) to the authority that require a hospital admission with a severe grading, although in practice clinics often report moderate OHSS as well. The HFEA does not, therefore, hold definitive data on the number of women admitted to the hospital with OHSS, including non-patient egg donors and egg sharers.
Such inconsistency in reporting means that the HFEA simply does not have definitive data on the number of women admitted to hospital with OHSS. Without actually knowing what health outcomes for previous donors have been, how can a potential egg donor ever give informed consent?
Hands Off Our Ovaries
In 2006, I launched a campaign called Hands Off Our Ovaries. It was a bipartisan, international, and intentionally diverse coalition of women and men coming together to express our concerns for women’s health in the area of egg “donation” for research purposes.
At the height of the human cloning debate, Professor Katrina George, lecturer at the School of Law at the University of Western Sydney in Australia, wrote:
research cloning involves serious health risks to women ova suppliers including OHSS and attendant risks of renal failure, infertility, and even death. There are a host of other suspected complications, including reproductive cancers in later life. Yet there are no benefits to the woman supplier. Advocates of research cloning have failed to demonstrate that sufficient ova can be sourced without harm to women.
At that time, the debate centered around eggs that would be used for human cloning and embryonic stem cell research. Now, we have moved away from those debates as advances in adult stem cell research and induced pluripotent stem cells have continued to develop. It’s proof of the ways in which ethical debates can and do move society toward ethical advancements in science.
With a new fixation on the three-parent embryo technique, it is time to remind people, once again, that healthy young women will be needed to supply their eggs. But egg donation—or more accurately, egg selling—is risky business. So we must raise the cry again:
Hands Off Our Ovaries!