Tracking Egg Donors Would Be an Emotionally Charged Decision, Not a Medical One

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Commentary Maternity and Birthing

Tracking Egg Donors Would Be an Emotionally Charged Decision, Not a Medical One

Eve C. Feinberg

I intimately understand the hardship that egg donation imposes. It isn't easy or casual. But, as a physician and an academic, I make decisions based on data, not feelings.

A recent New York Times piece, “Do Egg Donors Face Long-Term Risk?” tells a tragic story of a young woman who donated eggs on three occasions to help pay for her education, and was diagnosed, four years later at the age of 29, with fatal metastatic colon cancer. Her mother, Dr. Jennifer Schneider, who works in internal medicine, addiction medicine, and pain management, has since launched a crusade against egg donation.

No doubt, losing a child to cancer is a horrific tragedy. As a mother myself, I can only imagine the deep grief, anger, and desire to assign blame. Dr. Schneider’s daughter was, after all, seemingly healthy, and she had a bright future ahead of her.

But while I’m not unsympathetic to her tragedy, as a reproductive endocrinologist, infertility specialist, and medical director for Northwestern Fertility and Reproductive Medicine Highland Park, I feel compelled to point out the inaccurate narratives at work in her crusade.

To begin, colon cancer is the third most commonly diagnosed cancer and the second leading cause of cancer death, with a lifetime risk of diagnosis at about one in 20. Most patients with colon cancer have no family history of the disease, and younger patients are often diagnosed at later stages.

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The Times article mentions a paper published earlier this year written by Dr. Schneider and two other contributors, which describes five egg donors who developed breast cancer in their 30s. Though, as the Times notes, the authors do not explicitly link hormone stimulation and cancer risk, they do plead for a call to action to study the long-term risks of ovarian stimulation, the hormonal procedure required in initial stages of egg donation.

Medication for the ovarian stimulation required for egg donation is given in the exact same protocol and doses as for in-vitro fertilization (IVF). What Schneider and her contributors failed to acknowledge in their piece, however, is that a more wide-ranging study was published just last year looking at 21 years of follow-up for women who underwent IVF. It found that their breast cancer risk was the same as that of the general population.

Another study showed that even patients who carried BRCA mutations (what is often called “the breast cancer gene”) and had a high baseline risk for developing breast cancer were not found to be at increased risk by undergoing IVF. Surely we can all agree that studying 25,000 women speaks louder, and more accurately, than five isolated cases.

The Times article claims, however, that women who undergo IVF for themselves are older and “have endocrine or other abnormalities,” and therefore are not a reliable comparison group for young, healthy egg donors. But this conjecture is simply not accurate. In fact, one-third of all fertility cases involve male factors. What this means is that plenty of young, healthy women undergo the exact same ovarian stimulation procedure as an egg donor. Therefore, long term studies on the risks of IVF are, in fact, highly applicable to egg donors, given the near identical paths of both procedures in initial stages.

To be sure, any medical procedure carries risks. Specifically, the risks of egg donation include a risk of developing ovarian hyperstimulation syndrome. Side effects of the medications include bloating, weight gain, headaches, and mood swings. Other short term risks include ovarian torsion, or twisting of the ovary, which may decrease blood flow and, if left untreated, can result in the need to remove the ovary entirely. However, these risks have largely been mitigated in recent years through development of safer protocols and other technological advancements.

Dr. Schneider argues that patients are not informed of risk. As a physician who has cared for hundreds of egg donors in my ten years of practice, I staunchly disagree—my patients are counseled extensively on the short-term risks and side effects of the process.

The New York Times piece also suggests egg donors need to be treated like all organ donors, with the establishment of registries that would ensure long-term monitoring of health. However, the medical procedure of egg donation more closely resembles bone marrow donation—for which there is no long-term monitoring—than solid organ donation. In both procedures, the donor is given hormone injections to stimulate cell production, and a minor surgical procedure under anesthesia is undertaken using a needle to remove cells from their source: bone marrow from the back of the pelvic bone and eggs from the ovary. If there were complications, these would be almost certainly reported to the treating physicians and trends would be noted. To date, no general long-term consequences of cell donation, including eggs, have been found, either from such reporting or from previous longitudinal studies.

Egg donation is anonymous, and, in my experience, donors frequently have a strong desire to remain that way. If we move towards a registry and track long-term outcomes we likely would lose many individuals who simply want to do a good deed and not be forever tracked as a result. Furthermore, who incurs the cost of such a registry? The average cost of an egg for an infertile couple is between $25,000 and $30,000—would such a registry make it even more expensive, or cut into donor compensation?

The idea of tracking egg donors at this point in time, quite frankly, does not make medical sense. It’s an emotionally charged suggestion, not a scientifically sound one.

In addition to treating thousands of women in my specialized work, leading a multidisciplinary fertility and reproductive medicine team, and founding and leading a nonprofit to provide financial assistance to those diagnosed with infertility and struggling with the associated costs, I have also personally struggled with infertility and undergone multiple rounds of fertility treatments to have my three children.

Which is to say: I intimately understand the hardship that treatment imposes. It isn’t easy or casual. But, as a physician and an academic, I make decisions based on data, not emotion. As a fierce advocate for my patients, I strive to provide the safest, the best, and the most effective medicine. As a mother and a patient advocate, I make decisions to keep those I care for safe.

We must recognize the risks, the benefits, and the limitations of those with the generosity to help transform others’ lives, while embracing their goodwill. But we also must be sure we don’t allow emotion to obscure the facts.