By Jennifer Lahl, CBC National Director
The history of medicine has long been rooted in the ancient Hippocratic concept primum non nocere — “first, do no harm.” Yet we are living in a time in which the crazy train of advancing techno-medical practice is coming off its Hippocratic rails like never before. Case in point: the fertility industry.
This booming business is relatively new, having really taken off in 1978 with the in vitro fertilization (IVF) and birth of Louise Brown, the world’s first “test-tube” baby. Since then, reproductive medicine has been woefully unregulated and out-of-control. Can you say, “Octomom”?
Medicine Without Morals
Nadya Suleman’s octuplets recently had their first birthday. Early last year, when news broke in the mainstream and celebrity-reality-media, the blame game and finger pointing was endless. The reproductive medical community pointed to Dr. Michael Kamrava, Suleman’s physician, as some rogue doctor-turned-cowboy in the “wild wild west” of California fertility medicine — he didn’t follow professional guidelines. And yet, Dr. James Grifo, a fertility specialist at NYU School of Medicine said, “I don’t think it’s our job to tell them how many babies they’re allowed to have. I am not a policeman for reproduction in the United States.” Dr. Grifo, you are right, you are not a policeman. You are a medical doctor and a member of a profession which has fiduciary duties and obligations to your patients — that means both mothers and children.
Legislation Without Limits
Of course, the fertility industry, and those who profit from this $6.5 billion a year business, would like nothing better than to keep it unregulated and unlegislated. And sadly, legislators shy away from passing laws that would bring some sanity and safety back to fertility medicine; they’re either operating for or being intimidated by reproductive “choice” and “rights” rhetoric. The American Society for Reproductive Medicine (ASRM) — led largely by fertility doctors — is already pushing against the existing regulatory legislation over egg donation in several states. Much has been lost in the modern medical profession, which consistently avoids roping in this industry and their colleagues who practice in and profit from the baby-making business. The resistance is powerful and predictable.
For the last five years, I have been involved in legislative advocacy surrounding the fertility industry. Some bills call for a national egg donor registry to track the long-term health of egg donors, similar to how we track U.S. organ donors. Other bills would prohibit the large payments young girls are offered to “donate” their eggs. Some activities focus on our duty to protect children created by IVF, advocating for their right to know their biological parents. And a Kansas bill I helped write would compel the state to track, monitor, and report activities and services of agencies which handle or use human eggs, sperm and embryos — a common sense bill which would begin the process of gathering important data from a large and growing industry.
Whatever It Takes to Procreate
Chills still run up my back when I recall testifying to the Georgia State Senate in 2009. I walked into the packed, standing-room-only hearing, a whole bay of television cameras and reporters standing by. But what really caught me off guard were the throngs of women who held pictures of their IVF babies, accusing me of trying to steal their reproductive rights. Similar outpourings of hysterical resistance were just witnessed in Arizona, regarding legislation that would ban compensating women (apart from their out-of-pocket expenses) for their eggs. And more disconcerting are the doctors who not only encourage such dramatics, but willingly accept paying women huge sums of money for their eggs. One doctor asked, “How else are infertile couples going to get eggs if they can’t pay for them?” The answer, I suppose, is, “The same way a kidney donor gets a kidney.”
It is clear that the medical profession resists regulation so vehemently because there is so much money at stake, and not because anyone’s life hangs in the balance. Why else would they be willing to risk the health of young women egg donors, who by their own admission are not followed-up or monitored to produce any understanding of the short- and long-term health implications.
The Murky Waters of IVF
The first IVF children are only now entering adulthood — most are still under 20. And sadly, no long-term studies have been conducted. This is just irresponsible in light of the many risks and aspects we don’t yet understand.Researchers have found a five percent to10 percent chromosomal difference between IVF children and naturally conceived children.IVF children are at increased risk of birth defects such as neural tube defects and low birth weight (later predisposing them to obesity, hypertension and Type 2 diabetes). A new study just out in Europe (where IVF is heavily regulated and monitored) looked at 20,000 singleton pregnancies and saw a four-fold increased risk of stillbirths in children created using IVF or Intracytoplasmic Sperm Injection (ICSI) technology when compared to children conceived naturally or through non-IVF fertility treatment.
And what about the high failure rate of IVF? Recent U.S. data reports that of 140,795 cycles, only 56,790 resulted in births — 40 percent success. Given the promises of the baby business, it’s clear that infertile couples are willing to ignore the financial and health risks — to themselves, to their future children, and to third parties (e.g., egg/sperm donors, gestational surrogates). Is 40-percent-happily-ever-after worth the risks, the disregard, and the debt?
In mid-March, I was in Kansas to testify on Senate Bill 509. I was met with the same old resistance: IVF is safe, the horror stories are anecdotal; patients are well informed; regulation is a burden, infringing on people’s reproductive rights. In fact, the ASRM has announced its opposition to this bill and has already engaged their local state members to help defeat it.
What is different, however, is the fresh political will of some state legislators to change the practice of reproductive medicine in their states. These leaders will make the case for those who the fertility industry has left infertile, for the children, and for the unknowing reproductive consumers who need to know the risks.
Given the reality that the fertility industry and fertility specialists seem uninterested in changing their practices, if they are successful in blocking good, sound, sensible legislation, soon enough the facts will catch up with them, and they will have to answer to the public. We have the obligation to speak and legislate to protect those who have no defense and no recourse.