Conceivability_What I Learned Exploring the Frontiers of Fertility
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Unfortunately for Catherine, her second surrogate pregnancy was tougher than the first. She had morning sickness for much of the pregnancy, and was just miserable. I felt terrible every time I spoke with her on the phone. The guilt was overwhelming. She was suffering so much to give us a baby, and there was not a darn thing we could do to make her feel better. The distance was tougher on all of us too. Living in Dubai, with Catherine in England, we couldn’t participate the way we had with Alexandra and couldn’t support her as much as we would have liked. Thankfully, she had her wonderful family to help out, accompanying her to appointments with the doctor and staying with her when she was ill. We spoke and e-mailed frequently, of course, and I flew to England to accompany her to all the big milestone examinations, but we missed out on the others. I was incredibly grateful we had established such a strong relationship during her first surrogate pregnancy. It would have been all the more difficult if this were the first.
On the evening of March 9, 2010, about three weeks before our due date, I was in my bedroom in Dubai, having just put Alexandra to bed, when my phone rang. Catherine had preeclampsia and her blood pressure had gotten dangerously high. They were planning to induce labor. How soon could we get there? Within two hours, Richard and I were at the airport with a very heavy-eyed Alexandra and haphazardly packed bags. We took a red-eye to London, rented a car, and started driving to the hospital. When I turned my phone back on after the flight, my voice-mail box was full. Catherine gave birth to a very squishy, yellow, sleepy baby just as our wheels hit the ground at Heathrow. He was induced so strongly he literally shot through the birth canal. We raced to the hospital. Drowsy and confused, Alexandra asked where we were as we walked through the doors of the maternity ward.
“Darling,” I answered, “meet your baby brother, William.”
“And please give a hug to favorite Auntie Catherine,” Catherine chimed in from her bed.
“Yes, Alexandra. Say hello to favorite Auntie Catherine.” I smiled. That’s Alexandra’s nickname for Catherine. I call her Catherine the Great.
Egg and Sperm Donation
As with surrogacy, many aspects of egg, sperm, and embryo donation are legal and policy minefields. While certain medical aspects of donation are regulated nationally by the US Food and Drug Administration (FDA), complex issues such as donor compensation, anonymity, and the right of children to seek out the identity of their biological parent after they are eighteen remain outside the sphere of regulation, varying from state to state and clinic to clinic. Intended parents using donor sperm or egg, unlike those working with surrogates, fortunately do not have to face the terrifying question of whether their baby will be legally recognized as their own. But they face other obstacles, as regulations surrounding donation have simply not caught up with the scientific advances or the ethical questions. Neither the federal nor state governments, for example, regulate how many children may be conceived from one sperm donor; although the American Society for Reproductive Medicine suggests a limit of twenty-five births per population area of eight hundred thousand, there are reported cases of donors fathering sixty, seventy, one hundred, and even one hundred and fifty offspring.1 Nor do they regulate the age range in which an egg or sperm donor must fall; the type of medical information donors must provide, apart from an FDA requirement to test for infectious diseases, such as HIV; or whether the children conceived as a result of donation have any right to know of their origins. In contrast with the United Kingdom, in which the Human Fertilisation and Embryology Authority tracks all donor births, and many other developed countries that have followed the British regulatory model, in the United States, there is no central registry for donor-conceived children.2
These are thorny questions with real-life implications. If a man in a small town donates sperm regularly, what is to stop two children from unknowingly falling in love and committing “accidental incest”—a genuine concern when donors can father upward of one hundred half siblings? If he has a genetic disorder, such as sickle cell anemia or cystic fibrosis, or a predisposition to heart defects or schizophrenia, to how many children will the disorder unknowingly be passed on? There are hundreds of known cases of genetic defects being passed from donor to child, and experts believe there could be thousands. In one sibling group from the same donor, there are at least eight children with a deadly heart defect, and as many as three dozen born of a donor with mental illness.3 Is it fair that children conceived of donor eggs or sperm may have no knowledge of their own medical histories if their parents choose not to tell them how they were conceived?
To date, such questions are addressed on an ad hoc basis by local laws and courts, as is the controversy regarding donor compensation, particularly with respect to egg donation, which is significantly more intrusive and complicated than sperm donation. How much is enough for a woman willing to undergo weeks of hormone injections, blood tests, invasive ultrasound examinations, and egg retrieval, as well as expose herself to potential health risks, in order to help someone else have a baby? How much is too much, creating the feeling (or possibility) that a woman is selling her eggs like a commodity? Are advertisements in newspapers and on subways, college campuses, and Facebook offering compensation for giving the “gift of life” coercive, or troubling in light of the possibility that high levels of hormones taken in a typical conventional IVF cycle may have negative consequences for repeat donors, a topic that requires far more research?
In the United States, the pricing of eggs and sperm, like other issues surrounding fertility, is largely driven by the marketplace. Most states have yet to delve into these issues, and to the extent that states have enacted regulations, such as with surrogacy, they often conflict with one another.
In contrast, a number of developed countries, including much of Western Europe, Canada, and Australia, have confronted these issues head-on. Italy and Switzerland, for example, prohibit egg and sperm donation as well as surrogacy. Australia, Belgium, Canada, the Netherlands, and the United Kingdom permit these practices but prohibit the commercial purchase of donor eggs and sperm. Spain and the United Kingdom have limited the number of children that can be born from a single sperm donor to six and ten, respectively. Japan’s laws puzzlingly conflict with themselves: a donor of eggs or sperm has a right to anonymity, while a child born of a donated egg, upon reaching the age of fifteen, has a right to know his or her origins.4 The United Kingdom, Austria, Finland, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland, and certain parts of Australia allow donation but prohibit donor anonymity, in the belief that children have a right to know their genetic heritage.5
These are choppy waters to navigate. In the United States, where there is no requirement to tell children of their origins, views among parents, practitioners, and family therapists vary widely. Parents in heterosexual couples face the threshold question of whether to tell their children of the existence of a donor. Advocates of the “tell” side rely on the most obvious of arguments: truth, maintaining that not only do the children of donors have a right to know the truth, but also, pragmatically, that truth will in all likelihood come out in the end, especially with the increasing availability of DNA testing. Most family therapists support openness and honesty within the family, as does, officially, the American Society for Reproductive Medicine, although the ASRM, like many doctors, does not aggressively push that position. Perhaps recognizing the reality that more than half of potential patients are leaning toward nondisclosure,6 these clinicians may have a fear of alienating clients.
The reasons parents, especially women, offer for not telling their children cover a broader spectrum, although the response I most often received to the question was along the lines of “I’m not sure why exactly . . . I’m just not comfortable with it.” According to Joan Manheimer, a clinical psychologist at the University of Colorado Advanced Reproductive Medicine specializing in fertility, moving on to egg donation is often, for women who have failed to give birth, the
most difficult aspect of negotiating the rocky infertility road. Discussing the emotional trauma some women with infertility experience, Dr. Manheimer explained that many women are initially “shocked to find out that they have a problem because it doesn’t fit with how they feel.” They often then experience what she calls an “undefined loss.”7 There is no physical loss to grieve; rather they grieve the loss of having the genetic baby they had always assumed they would have.
Some women process that loss and are ready to move on in the open. Others are perhaps ashamed of being infertile, a condition that they fear may be stigmatized in our society. One woman, who did not want to be quoted, said she feared her parents would not accept the baby as their own grandchild; another said she thought that telling “wasn’t important” and would only make her child feel different or hurt. Patricia Mendell, a therapist who specializes in reproductive issues, finds that one of the most poignant reasons women or couples find it hard to come clean is that they get caught up in the fairy-tale version of the “perfect” baby in a “normal” family, convincing themselves that “it’s better for the child not to know the truth.”8 Barry Stevens, maker of the documentary Offspring about his search for his biological father, begs to differ: “What these parents don’t understand is that it may hurt me to know, but that doesn’t matter a whit. To us, it’s a fundamental matter of right.”9
Those who favor telling their children they were conceived with the assistance of a donor, along with single mothers or lesbian couples using donor sperm and single fathers or gay men using donor eggs, may wrestle with the issue of donor anonymity. Should a child know the donor’s identity? Some parents of donor-conceived children are also concerned about their children’s right and ability to locate siblings. Many donors in the United States have donated anonymously, guaranteed by the fertility clinic or sperm bank at the time that their identities would not be divulged. Many parents, similarly, viewing the transaction as akin to donating or receiving blood, intentionally choose anonymous donors. Jenny and Duke, an American couple, opted to go to Spain for IVF with an egg donor, motivated in part by their appreciation of the Spanish approach: all donations are closed (anonymous); compensation to donors is lower, which they felt made it feel less commercialized; and the clinics chose the donor for them, which they viewed as a relief.
Yet advocates of open donation and access to information, such as Wendy Kramer, founding director of the Donor Sibling Registry (DSR), believe that donor-conceived children have a right to know of their genetic origins, not only to know their medical histories but also because “having a complete sense of one’s biological origins fosters a more whole identity.”10 In the absence of a national repository of information, Wendy Kramer and her (donor-conceived) son, Ryan Kramer, founded the DSR to help donor families find one another. Begun as a small, private group, the DSR has grown into an organization with global reach. While the number of parents who choose not to register still outweighs those who do so, as of October 2017, the DSR had 55,783 members and had helped to connect more than 14,744 offspring with their half siblings and/or donors.11
The DSR has also shed light on the large size of some sibling groups, raising additional worries. With groups of half siblings totaling as many as 150 or 200, there is sufficient concern about the likelihood of donor-conceived children accidentally encountering genetic half siblings that some parents in the San Francisco Bay Area are asking their teenagers to memorize their donor numbers to avoid unknowingly dating a half sibling. Donors too have qualms about the numbers of offspring. One donor, who was promised that his donation would result in low numbers of children, was shocked to learn from the DSR that he has sired seventy children. He now tracks them on an Excel spreadsheet.12
Is donor identity a question of privacy or secrecy? Whose rights are paramount? Those of donors who may wish, and in many cases were contractually guaranteed, to be anonymous, or those of the offspring, who may desire to know the identity, or medical history, of their biological parents? Does society have a valid interest in the outcome?
Parents of donor-conceived children are forced to confront these kinds of difficult moral quandaries from day one.
Selecting Sperm
When Claire and her partner, Daphne, decided to have a baby, they knew that their first step would be selecting a sperm bank. Comfortable with the idea of a donor, they were decidedly less at ease with what they quickly came to view as the problematic market for sperm.
They began with their fertility clinic, which was essentially chosen for them as it was the only clinic that Claire’s insurance would cover. Meeting first with the director of the well-known clinic’s in-house sperm bank, Claire and Daphne were shocked to learn that all donations were anonymous, and that the information available about the donors was limited to only one line of statistics. When Claire asked if it was possible for them to get more information in order to have a more complete profile of the potential father of their child, the director replied that that was neither possible, nor necessary: “I met them, and if I didn’t like them, I wouldn’t use their sperm.” Dejected and certain that this sperm supplier was not a good fit, Claire and Daphne discovered that they could obtain sperm elsewhere and still use it at their insurance-mandated clinic.
The market for sperm has evolved to the point that it is nearly unrecognizable from its origin, more than a century ago. In 1790, the first successful pregnancy by artificial insemination was performed under the care of renegade Scottish surgeon Dr. John Hunter, who advised an infertile couple to have the husband collect his sperm into a warm syringe and then inject it into his wife. More than ninety years later, Dr. William Pancoast, a little-known doctor in Philadelphia, helped a similarly childless married couple conceive by performing the first known successful insemination by sperm donor—unbeknownst to the wife, who had been chloroformed while Dr. Pancoast solicited the donation of sperm from his most handsome student.13
From its somewhat dubious inception in 1884 up to the 1970s, sperm donation was performed locally, using fresh sperm, for heterosexual married couples. By the 1970s, the ability to freeze sperm led to commercialization and the birth of the modern sperm bank, which was available only to married couples. The AIDS crisis in the 1980s, which pushed the banks to freeze all sperm in order to test donors for HIV, fueled the growth and scalability of the banks. By 1995, sperm had become a big business, with sperm banks in all fifty states as well as dozens of other countries capable of shipping sperm in liquid nitrogen tanks to any destination. Sperm, in fact, grew to be one of Denmark’s top exports.14 Business exploded over the next twenty-odd years as societal trends turned in its favor, with couples marrying later, or not at all; gay marriage becoming the law of the land; and lesbian couples increasingly pursuing childbirth. In 2017, the typical sperm bank transaction is a far cry from its roots—global as opposed to local, frozen as opposed to fresh, purchased primarily by single women and lesbian couples, rather than their married, heterosexual peers.15
Throwing themselves into a nationwide search of this sprawling market, Claire and Daphne discovered that there were two types of donation—anonymous and open—and two types of sperm bank—private and nonprofit. Believing that “the more information the kids have, the better,” they knew they were headed for an open donation. As they researched, they learned more about some of the pitfalls of a virtually unregulated market rife with scandals.
In addition to some of the more predictable problems that arise from the lack of limits on numbers of children conceived from a given donor paired with the absence of a system to track these children, there are a host of unexpected challenges arising from what many view as deception and negligence throughout the industry.16 Clinics have been accused of careless record keeping, mishandling of sperm, and using misleading donor descriptions, and legal cases have been filed against sperm banks claiming fraud, negligence, and breach of contract.17 One woman attempted to use her husband’s sperm to conceive a child after his untimely death. To he
r shock, all six vials of his sperm—which had a 50 percent chance of carrying Marfan syndrome, which killed him—had been given to other clients. A white woman with a white partner, who purchased vials of sperm from a white donor, mistakenly received African-American sperm.18 A schizophrenic man with a history of psychiatric hospitalizations and an arrest record who passed himself off as a neuroscientist, unverified by the clinic, sired thirty-six offspring.19 A child conceived with untested donor sperm that had, unbeknownst to the parents, been in storage for twenty years, was born with cystic fibrosis, and there have been hundreds of donor-conceived kids similarly born with genetic defects.20
Claire and Daphne turned toward the nonprofit world, which presented only one option in the United States. The Sperm Bank of California, which considers itself an ethical leader in the field, offered them their three most important criteria: a limit of ten families that would receive sperm from the same donor, an identity release program that would enable their child(ren) to access information about their donor if they desired, and a family contact list to facilitate communication with other families with children from the same donor. They also liked that the bank was small, that it tracked all births from a given donor, and that the staff seemed to truly care about their clients. Although the number of active, available donors was fairly limited compared to the larger private sperm banks, Claire and Daphne identified five contenders, for whom they paid for full profiles. After reviewing the medical histories, personal questionnaires, and baby and childhood pictures of the prospects, their choice was clear: a down-to-earth, calm, college-educated, hobbyist athlete with seemingly good social development and a clean medical history.