Women As Guinea Pigs in Biotechnical Research

by Jennifer Lahl, CBC President on November 4, 2019

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From remarks delivered at the Heritage Foundation’s recent panel, “Bioethics: What It Is and Why It Matters

In 1985, just seven years after the birth of Louise Brown (1978), the world’s first ‘test tube’ baby, Gena Corea published her very important book titled, The Mother Machine: Reproductive Technologies from Artificial Insemination to Artificial Wombs. In it Corea writes:

“We are in the midst of a dramatic biological revolution:

  • Clinics for in vitro fertilization (IVF) are springing up throughout the industrialized world.
  • Physicians are artificially inseminating women, flushing embryos out of them and transferring those embryos to other women. They hope to make a postmenopausal woman pregnant soon.
  • IVF clinics in Australia, England and the United States are freezing human embryos for later transfer.
  • Plans are underway to fly embryos across the country so that, for example, an embryo could be flushed from a woman in Los Angeles and transferred into a woman in Massachusetts.
  • Commercial firms are offering the sale of surrogate mothers (breeders) to customers, some of whom are infertile couples, others, single men.

Fast forward to today and we find ourselves living in a multi-billion-dollar international biotechnological revolution. The predictions of Corea have become a scary reality. For example:

Data from 2017 tells that in the U.S. alone, we have nearly one million frozen human embryos, with seemingly very few concerned about this. The global in-vitro fertilization market is expected to reach  36.2 billion dollars by 2026

Now, postmenopausal women are getting pregnant – last month it was reported that a 73 year old woman has just given birth to twins in India.

A 2017 report shows that in the U.S., commercial surrogacy is a $2.3 billion dollar a year industry with no signs of stopping, as gay men now join infertile couples to buy eggs, rent wombs in order to buy a baby, and citizens from countries that prohibit surrogacy flock to the U.S.

In 2004 I began writing about egg harvesting procedures, the buying and selling of human eggs and the risks to women’s health.  This was at a time when our country was embroiled in the Great Stem Cell Debate. My writings caught the attention of women in the U. S., who were financially struggling university students who responded to an ad to make money and help someone have a baby. 

These women’s stories of short and long-term serious harms are featured in my documentary films, “Eggsploitation” and “Maggie’s Story”. These women recount suffering massive strokes, emergency surgery to remove a torsioned ovary, hemorrhaging requiring additional emergency surgery, loss of their own fertility, and diagnosis of breast cancer, all with the risk of death. During this time, California, passed its Prop. 71 initiative, called the “California Stem Cell Research and Cures Initiative”, which provided $3 billion dollars for mostly embryonic stem cell and somatic cell nuclear transfer research, known more commonly as human cloning. With the passage of Prop. 71 though, we were successful in banning scientists from being able to pay women for their eggs for research purposes. Currently, in California women can only be paid for their eggs to “help someone have a baby”.

However, the California legislators have now passed AB 922 which will allow women to be paid to sell their eggs for research purposes.  The bill title is: Reproductive Health and Research: Oocyte Procurement. The irony is not lost on me. California wants to legally allow scientists and physicians to risk a healthy young women’s life and perhaps her own fertility, in order to perform women’s reproductive health research. 

Governor Jerry Brown twice vetoed this bill in California, concerned about the exploitation of low-income women because the researcher doesn’t care if the egg donor has high SAT scores or is pretty. Brown opened his Veto letter to the California Assembly saying, “Not everything in life is for sale, nor should it be”.  Governor Newsom has now signed this bill into law.

But at the heart of this Great Stem Cell Debate was the mantra of these then half a million frozen human embryos that were just going to be thrown away anyway.

I was, of course, very concerned about the ethics of embryo research not only because it treats early nascent human life as a commodity, but also because where there is a human embryo, there is also a human egg, which comes at the risk of a woman’s health.  Countless women have been harmed physically and emotionally by advances in assisted reproduction and many more will be harmed with new emerging biotechnologies.

Have there been clinical trials on healthy women taking powerful fertility drugs to undergo ovarian stimulation?  No. Is there a registry to track and follow these women, like we do with organ donors, over time to see how they fare? No. It’s a curious statistic that the majority of organ donors are women with men being the majority of recipients of donated organs. Are women expected to assume more risk to their health for our shared common good?

Make no mistake, assisted reproduction exists today because of countless experiments done on women, by their physicians, often without their knowledge or consent. Unlike new drugs, therapies, medical devices that come through the channels of institutional review boards (IRBs) and animal-to human clinical trials to ensure safety and protections, women were literally guinea pigs, and they still are.  John Buster an Ob/Gyn doctor at UCLA in the 1980s said, “You understand that this is done in the cattle business all the time. There’s nothing new in all this. It’s all very feasible. It’s just a case of setting it up.” His message is, if it is ok to do this on cattle, then why not do this on women.

Since there has been no research proving the safety or identifying the risks to women egg vendors, or women serving as surrogates and by extension, the children born of assisted reproductive technologies, the approach has been literally a “learn as we go” approach.   One doctor in Liza Mundy’s book, “Everything Conceivable” said the early days of fertility medicine was like throwing spaghetti on the wall to see what would stick. We are only learning now that a surrogate pregnancy carries more risk than a natural pregnancy. Keep in mind the surrogate is not an infertile patient and assumes these risks to her health often for money.  Egg donors and surrogate mothers have died. As this is still relatively new technology, we are only now getting some studies on how the children fare who have been created through assisted reproduction, challenging the narrative that the “kids are alright.”

 Just last month, I interviewed a woman, who in 2018 made the decision to harvest and bank her own eggs in order to beat her biological clock. She knew, as a 36-year-old woman, her egg quality and quantity would only diminish, and she was not yet ready to start her family.  This new “technology” is now being offered as an employee benefit in many companies. Unfortunately, this technology lacks the safety studies other medical procedures require. Now in 2019, this same young woman has been diagnosed with breast cancer. She has had a lumpectomy and a month’s worth of radiation.  Doctors have told her that there is no evidence that taking powerful fertility drugs to stimulate her ovaries, to produce the 31 eggs they harvested, caused her cancer. What they should have told her is that there have never been any long-term studies on healthy women, who are not patients, so, in fact, we have no idea what the risks are!  She has also been told that when she wants to have children, she will most likely need to use in vitro fertilization!

Women and children have been harmed with physical and mental injury and they have been wronged by being treated unfairly, unjustly and used as guinea pigs. And now CRISPR research is advancing, gene-editing of human embryos is here and for now, women will be required to provide the eggs, to make the embryos, in order to do the research.  The late great Princeton ethicist, Paul Ramsey, suggests this helpful distinction between experimentation vs. actual treatment or therapy, by suggesting women ask this question, “Doctor, are you doing this for me or am I doing it for you and your research?” Ramsey also cautions against unethical research on human embryos who are not able to give consent.

Dr. William Hurlbut at Stanford University said in a recent interview discussing genetically modified babies,

 “It’s very troubling that the world is not more concerned. Maybe this is what you get when the news is reduced to trivia. And that is rather sickening, because these are monumental issues. This really is like no other news; it really is about the future of our species. Most things come and go, but this is going to be with us.

That said, I don’t think germ-line genetic engineering, unless it sails off into illegal fertility clinics, will be a major phenomenon, at least not for decades. The real issue to me remains the creation and destruction of human embryos for research. That is the core problem; the use of human embryos as tools—their instrumental use—continues to be overlooked. The trouble is, this is very important science, but it’s not like studying something in a test tube. These embryos are living organisms. The use of human embryos to study developmental biology remains a huge story.”

The use of embryos, women, their bodies, as tools, should move us to re-examine where are the ethics in bioethics.

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