Conceivability_What I Learned Exploring the Frontiers of Fertility
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It does not feel the same, however, with the quest for knowledge about fertility treatments. Although I, like virtually everyone with whom I spoke, started out regarding my fertility problems like any other medical issue, relying on the advice of my doctor, over time I became increasingly dubious. It is virtually impossible to pinpoint precisely when that begins to happen, but one day you wake up and realize that you don’t exactly trust what you are being told. Something just doesn’t feel right. Some, like Jessica and Paula, felt that their doctors, focused on numbers and success rates and profitability, pushed them toward certain protocols. Rose and Anna viewed their own clinics as too standardized, failing to differentiate the protocols to account for their individual situations. Marcy found her first clinic to be so protective of its own success rate that they didn’t want to treat a difficult case.
Underlying their differing resentments was the shared sense that they simply didn’t receive enough accurate information about the available treatment options, the probability of failure, or the costs. And, perhaps because emotions run high when discussing experiences at fertility clinics, no patient I spoke to attributed this lack of disclosure to a benign cause. All seemed to feel there was a willful withholding of information. But is it that simple?
In an almost complicit relationship between doctor and patient, doctors are perceived to be all-knowing. The patient goes to a doctor, particularly a specialist, with the expectation that a problem will be solved. Fertility experts try their best to provide solutions and often rely on what has worked before. Patients tend to follow their advice unquestioningly, even when they are uneasy. I know I did. I deferred to the experts. Yet our understanding of egg and embryo development, the role of hormones, endometrial lining, genetic testing, culture mediums, oxygen levels in incubators and other factors is constantly evolving, contributing to a widening gap between the knowledge gained through scientific research and medical practice. Fertility specialists running extremely busy clinics (and businesses), in a vacuum of federal regulation, are not necessarily keeping up with the advances or incorporating them in their practice. Add to that a further communication gap between the knowledge of doctors and what they impart to their patients. Whether the knowledge gap is intentional or accidental, most patients feel that salient information is not filtering down the chain.
On the more cynical end of the spectrum, experts within the field have noted that it’s not in the interest of fertility doctors to make their treatments more effective, that there is “almost a willingness to remain ignorant” as it is “easier and more lucrative to keep doing the same old thing”; that having people “fail means that they come back again.”8 Slightly less pessimistic, scientists I spoke with at the conferences I attended attributed the small number of fertility doctors present, particularly those from the United States, as stemming either from arrogance or complacency. “They already have the biggest market, the world flocking to them, regardless of their success rates, so they don’t feel the need to change their methods,” one European embryologist wryly commented, noting that clinicians often give patients wrong, or outdated advice. When I asked why, he responded that the current information is “not what’s in their grasp.” Another explanation is that they are simply too busy treating patients to take time off for conferences, a rationale that seems to extend to the doctor-patient relationship as well. Among the many patients I spoke with who felt grossly underinformed by their doctors, the perception was that the doctors were either too busy, or too paternalistic, to have the detailed exchange of information they desired.
Whatever the reasons, there seems to be an unacceptable culture of ignorance permeating the communication chain. Patients need accurate and current information in order to make the right decisions about their fertility options. But if they are not getting the whole story from their doctors, where are they going to get it?
More and more, they are getting it from one other, and for the hearty few, from publications aimed at those in the medical field. For many years, fertility patients have built networks aimed at offering emotional support and the sharing of valued practical information. Communities like those formed around Resolve: The National Infertility Association, Fertility Authority, FertileThoughts, Fertility.org, and Fertility Friends provide not only emotional support from those in the same shoes but also often include detailed descriptions of treatments (what hurts, what doesn’t), protocols (what works, what doesn’t), clinics and doctors (who’s good, who’s not), and even specific travel information for those considering reproductive tourism abroad.
Recently, after tackling the unexpectedly difficult task of finding the best fertility doctor and clinic for themselves—navigating a maze “filled with hearsay, half-truths, and marketing spin” as well as frustrating and potentially harmful medical errors—Jake and Deborah Anderson-Bialis founded FertilityIQ, a website dedicated to compiling crowd-sourced data to help fertility patients educate themselves and make decisions on their care.9 Focused initially on compiling evaluations by patients of doctors and clinics to help others select the right doctor for them, FertilityIQ now also offers extensive data on expenses; insurance coverage; companies with good insurance plans; IVF success rates by occupation, educational level, wealth, and geography; as well as expert commentary on the medical aspects of fertility treatment—essentially a Bloomberg for fertility. Not surprisingly, in examining how IVF patients feel about the quality of information they receive in the treatment process, the FertilityIQ team discovered that nearly half of all patients surveyed regard IVF as the most important moment in their lives, yet nearly three-quarters feel that the information they receive is insufficient and half worry that it is biased.10
For those willing to plunge into more detailed scientific information, Fertility and Sterility, an international journal for various specialists treating and investigating infertility and reproductive disorders, proved to be an invaluable source of information on my specific problems. Though not exactly beach reading, I found most articles to be quite clear and very helpful.
An aspiring parent is well served to talk to people, peruse websites, question doctors, read scientific journals, look at international sources. It doesn’t matter how one gets one’s information, but it is essential to get the information needed to make an informed decision. Information is power, and key to success.
The Policy Gap
What makes a parent a parent? Who is entitled to be called a parent? The person who provides the genetic material (even in the case of a donor who has agreed to donate and give up parental rights)? The woman who carries the baby (even in the case of gestational surrogacy where she has no genetic connection to the baby)? The individuals who commissioned the birth (even if one or both intended parents is not a genetic parent)?
Who is entitled to determine the fate of an embryo once created? One of the parents? Both the parents? What if they disagree? In the case of donation, is the “parent” the donor or the intended parent?
Is it morally acceptable to select an embryo for certain traits, like gender? To create a baby who is a perfect genetic match to save the life of another? Once possible, to manipulate an embryo for certain traits through gene editing?
Scientific advancement has given rise to a host of extremely difficult ethical questions that our society has yet to deal with in any way that closely approximates a consistent and holistic manner. The government, for the most part, is of little help in addressing these challenges, and the regulations that do exist are haphazard at best.
I don’t believe that the federal legislators who failed to regulate IVF in the 1970s; or the current state legislators in states like New York and Michigan that prohibit or criminalize surrogacy, or in states like Georgia, Maine, or Hawaii that fail to regulate it at all; or the legislators in Illinois who permit embryo donation subject to contract while judges in Massachusetts have found such contracts to be unenforceable, intended to create a Rubik’s Cube in which those who can solve the puzzle (and
afford it) can purchase the desired fertility services in a favorable jurisdiction, while those who cannot (and lack the financial resources) remain childless. Yet unfortunately, that is where we find ourselves today.
Would-be parents formerly incapable of having children can now achieve their dreams through a myriad of ways previously reserved for the province of science fiction: single women or lesbian couples can use a sperm donor; single men or gay couples can turn to an egg donor and surrogate; straight couples facing infertility can try IUI, IVF, IVF with PGS or PGD, ICSI, and, if necessary, donation or surrogacy. But to legally claim parenthood of these miracle babies, the intended parents must reside, or conceive, or give birth, as the case may be, in the right place. If Catherine, our practically perfect surrogate, had given birth to Alexandra and William in New York rather than England, she would have been deemed their mother and I would have had to adopt my own children, presuming I was lucky enough for her not to challenge my motherhood.
Even more complicated are the rules surrounding the use of embryos, particularly with respect to the field of embryo donation, also, somewhat controversially, known as embryo adoption. Regulations relating to frozen embryo usage and embryo donation are so inconsistent that they make the patchwork quilt of rules regarding egg and sperm donation and surrogacy look downright organized. Since there is no central repository of information about frozen embryos, it is difficult to know with certainty, but experts estimate that there are likely about a million embryos in storage today.11
Usually frozen by couples or singles intending to save them for future cycles, whether as backup for a failed cycle or for a theoretical sibling, most people are not focused on the ultimate disposition of their unused embryos at the time of their creation. Options such as disposing of them, donating them for research, or giving them to another family hoping to have a child, raise questions for many about the moral and legal status of the embryo. Philosophical and personal views can become oddly intertwined, and conflicting. Harkening uncomfortably close to the abortion debate, for example, some question when life begins, and whether destroying an embryo is destroying a life. While most couples avoid addressing such issues at the outset, even those who initially come to a decision often change their minds after the embryos have been created, as they may begin to think of them as their own frozen children. Couples who initially planned to donate to another family may feel differently when confronted with the reality of giving their hard-earned embryo away, finding the idea of another genetic child out in the world, a biological sibling to their own son or daughter, a bit too uncomfortable. With substantial numbers of people unable to decide or agree, the national stock of embryos builds. Even those who think they are clear are often reluctant to act. Richard and I have always agreed that we would donate our embryos to research, and we still plan to do so. But we haven’t gotten around to doing it yet. Most of the patients I interviewed had a clear plan, but no one I spoke with has actually disposed or transferred their embryos.
While there is rarely conflict when the embryos are used in a future cycle as envisioned, there is plenty of room for disagreement when it comes to what to do with the embryos that are not used as planned in a subsequent cycle for the same intended parent(s). Couples who separate after the embryos are frozen, for example, face questions about their embryos’ fate. In 2015, Nick Loeb, formerly engaged to Sofia Vergara, publicly called out the “important questions about life, religion, and parenthood” raised by embryonic custody disputes in an op-ed arguing that a man “who is willing to take on all parental responsibilities [should] be . . . entitled to bring his embryos to term even if the woman objects.”12 Acknowledging that the couple signed a form stating that any embryos could be brought to life only with both parties’ consent, Loeb contends that the form did not comply with California law, which requires that the couple specify what would happen in the event of separation, and should therefore be voided. Vergara, now married to another man and not interested in having a child with her ex-fiancé, wants the embryos to remain frozen. Their case, like others, is now in the hands of the state court system, where judges have been generally reluctant to compel a person to become a parent against her or his will; the few exceptions to date have arisen in cases in which the potential mothers had undergone chemotherapy rendering their frozen embryos the only means by which each could become a biological parent, tipping the balancing of interests in favor of the woman’s desire to have a child over the man’s desire not to procreate.13
Perhaps the only issue dicier than deciding custody of existing frozen embryos is the question of regulating the creation of embryos expressly for donation, whether for research or for “adoption.” Scientific research on embryos has long been a hotbed of controversy, with the United States, not surprisingly, as an outlier on the more restrictive end of the spectrum. While only a handful of European countries, including Belgium, Sweden, and the United Kingdom, permit the creation of embryos for research, most European nations allow research on donated embryos left over from IVF cycles. Since 1995, federal regulation in the United States has banned funding of any research that involves destruction of an embryo, whether existing or created for research purposes. But private funding and certain state laws have sought to fill in the gap, with eight states enacting policies that encourage embryonic research, in contrast with an almost equal number that prohibit or severely restrict it.14
Ironically, at the same time that most states and the federal government impose severe restrictions on embryonic research that could potentially help cure innumerable diseases, in other states, such as California, embryos can be created from “donor” eggs and “donor” sperm—purchased by the clinic from donors with desirable traits (tall, thin, well educated)—for the explicit purpose of being sold to patients. “These are not donated embryos,” explains Andrew Vorzimer, a California-based fertility lawyer, on his blog, in reference to the created embryos that are owned by the fertility clinic. “Rather, they are embryos created from donors hand-selected by California Conceptions. It is one step removed from a mail order catalog. The only difference is that the product being sold is nascent human life.” Noting the large numbers of “unwanted human embryos in the United States,” Vorzimer concludes that “donated embryos do not make for a very profitable business model.”15 But clients, having suffered years of infertility, praise the program, which offers three tries and a money-back guarantee, as well as success rates (self-reported) pushing 75 percent while eliminating potential uncertainty that could result from adoption. When asked by Dr. Ernest Zeringue, founder of California Conceptions, whether the practice was ethically acceptable, the ASRM said the ethics committee thought it would be premature to issue an opinion.16
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The science and technology of fertility treatments will likely continue to outpace our society’s ability to confront the legal and ethical challenges spawned by these advances. Techniques such as mitochondrial replacement therapy and gene editing raise a new generation of ethical and policy questions that undoubtedly will be handled in different ways around the globe, and throughout the United States.
On April 6, 2016, a healthy baby boy was born to Jordanian parents who had been trying to start a family for nearly twenty years in what has been described as a normal, trouble-free birth. The young Jordanian’s conception, however, was far from run-of-the-mill. Born to a mother with Leigh syndrome, a severe neurological disorder that is passed on through the mother, the boy is the first to be born as a result of an innovative and controversial technology known as mitochondrial replacement therapy (MRT), or mitochondrial donation.
Mitochondria, known as the powerhouses or batteries of the human cell, sit outside a cell’s nucleus and contain tiny quantities of DNA, provided solely by the mother. Their function is to provide the cell’s energy, rather than conferring genetic traits; genes in the cell’s nucleus, containing DNA from both mother and father, determine inherited characteristics such as appearance and intelligence.
The couple eventually found their way to Dr. Zhang, of New Hope Fertility Center, and learned about MRT. The type of mitochondrial transfer he proposed, known as spindle nuclear transfer, enables doctors to create an embryo with the genetic material of three “biological parents” by taking the nucleus out of the mother’s egg, which has unhealthy mitochondria, and injecting it into a donor egg (which has had its nucleus removed) that has healthy mitochondria. The mitochondrial DNA from the donor egg will comprise only 0.05 to 0.2 percent of the DNA of the resulting embryo.
Banned by Congress in the United States, Dr. Zhang and his team traveled with his Jordanian patients to Mexico, where there are no laws that prohibit the procedure, generating both praise and criticism. Supporters hailed the birth as a triumph for progressive medicine with the potential to both eliminate certain incurable genetic diseases and provide hope and relief to the families confronting the pain of mitochondrial disease. Critics called it irresponsible, arguing that not enough research had been done to know whether it was safe. Opponents also questioned the long-term implications of creating children with DNA from three parents; any daughters born would pass on this new “combined” DNA (known as germ modification) to their future offspring, the consequences of which are unknown. In the case of the Jordanian family, because the child is a boy, he is incapable of transferring the combined DNA to any future children, sidestepping the ethical question for now.