My mother and I sit next to each other enjoying the radiance of the sun. It was a rough winter for her, with multiple hospitalisations, tubes and wires monitoring her every breath, followed by a depressing stay in a dismal rehabilitation center. Now, several months later, with the hot breezes of summer and the song of the cicada echoing in her ear, she is much stronger and vital, that much further from the edge of death.
During the trying months of her illnesses, I frantically sought solace in technological interventions that might prolong her already long life. When the bells on her heart monitor and blood oxygen machines beeped, I would instantly spring into panicked action and run for help. The nurses were patient, assuring me that even though the machines beeped it didn’t mean my mother was in distress. They advised me to look at her breathing patterns, to notice the rosy flush of her face. Her health was improving, they told me. But it was difficult to believe them. I was more inclined to trust the interventions than to rely on my own senses and intuition.
As my mother regained her strength I concluded that, whether we are conscious of it or not, we humans are hopelessly hooked on the potential promise that medical technology symbolises in our lives. Time and time again we look to technology and pharmaceuticals to deliver us from painful situations we do not like and cannot control. In this age of technological fetishism and all-pervasive marketing, most of us have been trained since birth to expect modern medicine to conquer disease, ward off death, and sometimes, even create new life in a laboratory when none would stir inside us.
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It was a hot July day in 1978 when two British men dressed in blue surgical scrubs – Patrick Steptoe, a gynaecologist, and Robert Edwards, a physiologist – held a healthy infant in their arms. A photo was snapped and within minutes news spread that the world’s first ‘test-tube baby’ had been born via in vitro fertilisation (IVF) – a controversial procedure whereby sperm and egg are fertilised outside the human body. For the millions of people reading the headlines that day, IVF was yet another example of how modern science had conquered Mother Nature.
But missing from that first photo was the baby’s mother, Lesley Brown, whose blocked fallopian tubes had made her an ideal candidate for a successful IVF cycle. More ominous was the absence of any mention of the almost 300 or more infertile women at Oldham General Hospital in Lancashire whose experimental IVF procedures had failed prior to Lesley Brown’s success, or of the hundreds more in other countries that were then experimenting with the technique.
It is not clear if the invisibility of these women’s experiences and the omission of the historical context of IVF failure was a calculated move by the British medical team, or by the Daily Mail, the newspaper that had bought the rights to release the story. Nonetheless, the exclusion of these important details immediately conjured a public illusion that IVF was routinely successful and reliable. By not telling the whole story, the doctors and the media ushered in an era of mass misinformation about the risks and limitations of the procedure – a practice the global reproductive technology industry still employs today.
In her book, Pandora’s Box: How the First Test Tube Babies Sparked the Reproductive Revolution, Robin Marantz Henig documents the particulars of the scientific race to become the first to spawn human life outside the body. Numerous researchers in Britain, the US, Australia and China had worked for decades trying to replicate the intricacies of conception. It was the ten-year partnership of Steptoe, a surgical gynaecologist known for his pioneering work with laparoscopy, and Edwards, a physiologist with a background in genetics and fertilisation in mice and rabbits, that finally cracked the code.
Edwards used his own sperm and that of his male graduate assistants to fertilise the precious human eggs, also referred to as oocytes or ovum, that he was able to procure. But it was only after he began collaborating with Steptoe that his supply of eggs and the pace of his IVF experiments accelerated. Based in the working-class area of Greater Manchester, Steptoe had access to a fairly steady stream of the prized ova that Edwards needed for his experiments back in Cambridge. Molly Rose, a gynaecologist at Edgware General Hospital outside of London, and Sanford Markham, Chief of the Section of Obstetrics and Gynaecology at the US Air Force Hospital in South Ruislip, also provided Edwards with oocytes and ovarian tissue samples.
Markham has written that the women in the 1960s and 1970s who were patients at the US Air Force hospital consented to provide their body parts but did so without full knowledge of the nature of the experiments:
‘… Bob mentioned that he was in need of ovarian tissue from reproductive aged women… I offered to obtain tissue if we could work out a scheme to transport the tissue… to Cambridge… In all cases the patients provided their consent for utilization of their tissue for research. They were not told what the research work involved.’
Sandra Crashley was a 24-year-old mother of two in 1970 when she consulted with Steptoe about severe cramping during her menstrual cycles. In her book, My Ordeal in Edward’s Nobel Prize: The Testimony of an IVF Guinea Pig, she describes how Steptoe removed one-and-a-half of her ovaries without her permission. The procedure shocked her body into early menopause and rapid aging – to the point where she became wheelchair bound at an early age.
The ethical considerations associated with informed consent linked to experiments that could potentially create human life in a laboratory was only one of many concerns raised by a suspicious public and medical establishment at that time. Many commentators expressed alarm that women, embryos and potential offspring were being used as guinea pigs at the expense of scientific inquiry. After all, there was no guarantee that a child born from IVF would be healthy. It was a fear Steptoe and Edwards harboured.
The night Louise Brown was born, Steptoe chose to perform a Caesarean delivery in a location kept secret from the media. Barry Bavister, one of Edwards’ graduate students who helped develop the culture medium the embryos grew in, was quoted in The New York Times as saying: ‘If the baby was abnormal, they sure did not want the press in the delivery room.’
In fact, the Times article said, if the baby had been malformed, that would have likely been the end of IVF. The procedure had succeeded only with rabbits at that point, so it was a huge leap of faith for Steptoe and Edwards to attempt it with humans.
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For close to four decades now, well-funded marketing strategies, poorly researched news stories and general ignorance about fertility has helped position IVF as one of mankind’s greatest medical breakthroughs; which it is – but only to a degree.
During a natural menstrual cycle, a woman’s ovary, about the size of a walnut, usually releases only a single egg. During an IVF procedure, most women are exposed to follicle stimulating hormones known as gonadotropins that hyper-stimulate egg production. This kind of hormone blasting can sometimes cause ovarian hyper-stimulation syndrome (OHSS), a condition where a woman’s abdomen fills with fluid and her ovaries swell to the size of grapefruits as they produce a dozen, 20 or even 40 eggs or more. In extreme cases, stroke and even death are known to occur.
Egg retrieval involves piercing the vaginal wall and the ovary with a long needle that is maneuvered to pierce one follicle after another. Suction is then applied to draw the follicular fluid into a test tube where oocytes are found floating in the liquid. If embryos incubated in a culture medium – referred to by the industry as ‘baby broth’ – result, they are then transferred into the uterus, where they either flourish or die. Every year, an estimated 350,000 happy couples from around the world go home with a baby in their arms – but there are millions more who don’t.
The European Society for Human Reproduction and Embryology (ESHRE) asserts that of the 1.5 million IVF cycles performed annually, roughly 1.2 million fail. This translates into a global IVF failure rate of almost 80%. In the US, recent reports from the Centres for Disease Control (CDC) indicate a national failure rate of roughly 70% per cycle across all ages. Public information provided by the UK Human Fertilisation and Embryology Authority indicates that 73% of cycles fail annually.
Due to poor record keeping in many countries, it is virtually impossible to know for sure how many babies have actually been born via repro tech services. Over the years, however, various industry representatives have estimated anywhere from one to five million. In a 2001 interview, Robert Edwards was quoted as saying that one million IVF babies had been born since 1978. Five years later, in 2006, those approximations rose to two million, and in 2012, to five million.
These estimations suggest that in just six years – from 2006 to 2012 – three million babies were born via repro tech. Yet, according to the ESHRE’s calculations of 350,000 live births annually, only around two million such babies would have been born during that 72 month time period, and seven million couples would have experienced failed cycles. Extrapolating this over the entire four decades, it is likely that more than 20 million patients and consumers worldwide have endured fates similar to those hundreds of forgotten women at Oldham Hospital.
Edwards was sorrowful and frustrated that IVF could not always alleviate the suffering and stigma that so many infertile couples experienced. His concern for them was genuine and heartfelt and, as a scientist, he was driven to understand why the human reproductive system was so toxic to the embryos he created in a petri dish. In A Matter of Life, the book he co-authored with Steptoe in 1980, he described how the fertilised embryo in the laboratory often thrives until it is transferred back into the natural environment of the female uterus.
‘I had few fears… cleaving embryos are very small but resistant to damage… Their powers of regeneration are astonishing… this resistance lasts to the blastocyst stage… before fading after the embryos become implanted in the womb… it is only then that their growth may become distorted to cause… defects in the baby… These disasters occur after the embryo has been implanted in its mother and not before, so they would not arise in our culture fluids…’
In an article he wrote in Nature magazine in 2001, he again expresses his growing frustration with the 80% IVF failure rates and pointed to women’s bodies rather than technological innovation as the culprit:
‘I assumed human embryo implantation rates matched those of laboratory and farm animals, only realizing some time later that only 20% of them can implant successfully… Something must be fundamentally flawed with a reproductive system that allows only 20% of embryos to implant, even in younger couples.’
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Remarkably, these high IVF failure rates have not derailed repro tech’s reputation for providing hope where hope might otherwise not exist. Part of the reason dates back to the industry’s early legacy of omission.
Until the last few years, when a wave of women in various countries began writing about their negative experiences, it was virtually impossible for the average internet user to find anything but success stories about IVF on the web. Putting their best foot forward, infertility clinic websites routinely post photos of smiling babies and pregnancy rates but neglect to mention high miscarriage and low live birth rates. News stories about miracle births, a couple’s triumphant arrival into parenthood after a gruelling ten-year journey, and sensationalised stories about new discoveries have also fuelled public confidence in the services.
But during the last decade the industry’s factual omissions and the media’s exaggerated reporting have contributed to a disturbing pattern: healthy women have started flooding infertility clinic waiting rooms because they no longer trust the natural conception process. This fear-based demand is slowly transforming IVF from a respectable medical intervention designed to treat specific maladies into an over prescribed elective enhancement therapy.
A number of scholarly articles and studies published in prestigious medical journals over the last several years have exposed the lack of evidence supporting the non-medically indicated use of IVF. A 2013 CDC study revealed that, despite an increase in the number of couples using IVF, infertility diagnosis in the US had actually declined over the last three decades. The consumption of repro tech services was being ‘driven by a change in the market, not biology,’ said Anjani Chandra, lead author of the study.
In a controversial 2014 British Medical Journal article, 15 experts referred to a ‘lack of will’ among the medical establishment and the public to question the perceived success of IVF. They stressed that many infertility clinics were increasingly prescribing the procedure to couples that had subfertility and likely would conceive eventually if they only tried for a longer period of time. Research from Spain in 2015 found that, despite the industry-wide practice of recommending elective embryo freezing, there was no proof that the costly service increased a couple’s chance of birthing a baby. A more recent large study from the CDC found that the use of intracytoplasmic sperm injection (ICSI) – where sperm is injected directly into the egg – has more than doubled in the last two decades. ICSI was initially developed to treat certain male infertility conditions, like sperm defects. The 2015 investigation, however, found that ICSI was regularly being employed whether the male had a problem or not and that the expensive service did not improve live birth rates.
Part of this proclivity to prescribe repro tech services gratuitously may be due to well-intentioned doctors trying every available option to help couples to conceive. But it is also most certainly linked to clinic revenues. Profit motivation combined with rampant distortions about efficacy has earned medical entrepreneurs annual returns estimated at US$10 billion globally. This number is expected to more than double in just six years: by 2020, some market research predicts the industry’s global value will hit US$21 billion.
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Many couples that don’t conceive after a few months turn to the internet to learn why. Once online it is easy to be overwhelmed by hundreds of websites and news stories urging them to sign up for repro tech services before it’s too late. It is not unusual for IVF commercials featuring cuddly babies or instant chat windows to pop up on the screen, inviting distraught couples to click just once to enter the Promised Land.
What most couples don’t know when they begin searching for answers is that there is no globally agreed-upon definition of what actually constitutes an infertility diagnosis. Consequently, even among public health institutions and experts there is a lot of confusion and diverging opinion. In the UK, the National Institute for Health and Care Excellence defines infertility as a ‘failure to conceive after regular unprotected sexual intercourse for one to two years.’ Demographers, on the other hand, often require a five-year period to determine infertility patterns in a population. The World Health Organisation has changed its infertility definition timetable multiple times in the last few years, from one year in 2009 to two years in 2012.
The American Society for Reproductive Medicine (ASRM) is an influential trade and lobby group in the US charged with policing 500 unregulated infertility clinics. Its 2008 definition stated that infertility is a disease defined by failure to achieve a successful pregnancy after 12 months or more of regular unprotected intercourse.
The very intentional use of the word ‘disease’ and its timetable of 12 months was likely aimed at private health insurers that remain steadfastly opposed to providing coverage for services that fail so frequently. But inserting the word ‘disease’ into the definition raises other questions.
There are many reasons why a couple might not conceive within a 12-month window that have absolutely nothing to do with infertility diseases in women or men. An estimated 30% of infertility cases are unexplained, and contrary to popular belief, even spontaneous conception among young, healthy couples can sometimes take longer than a year.
High stress levels or the hectic lifestyle of a dual-income couple that travels frequently for work and can’t copulate at peak ovulation times are also factors that might hinder conception, but they are not diseases. Older women in their 30s and 40s who have trouble conceiving are not necessarily sick. They don’t have a disease, per se, unless the industry is now framing the onset of menopause and natural fertility decline as an illness that inhibits conception and must now be ‘fixed’ via hormone shots and IVF.
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When you marry misinformation and the aggressive marketing tactics of the industry with the psychological profile of a woman who is nervous and fearful about her natural reproductive capacity, you begin to understand how new customers are being reeled into the waiting rooms of an estimated 2,300 repro tech clinics operating in 56 countries today.
This is an extract from a longer essay that appears in Dark Mountain issue 8: Technê.
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Image:
Mario Popham
Partial Eclipse
from Looking Glass, an ongoing series taken within British educational institutions. A generation of young ‘digital natives’ cannot recall a pre-internet dark age when our lives were not heavily mediated by technology with its promises of instant knowledge, distraction and control. What does our relationship to technology mean for consciousness and our conception of ourselves when we occupy the virtual and material world concurrently? What does it mean to be a human being in a world designed, simulated and overseen by our machines? Looking Glass addresses the anxieties that surround our new divided condition.
