Breeder reaction: does everybody have the right to have a baby? And who should pay when nature alone doesn't work?
"When she said that," Benitez told me, "I was so upset, but she made it better by saying the other doctors would do it for us." Benitez and Clark tried home inseminations for a few more months, and Brody even did some exploratory surgery. But when the time came to schedule a more effective in utero insemination--a procedure that involves injecting sperm directly into the uterus--an assistant from North Coast Women's Care called to inform Benitez that no one in the practice would do the procedure, nor would they refill her prescriptions. Benitez demanded to speak with the head of the clinic, who responded by telling her that he, too, objected to helping lesbians have children and would not further her care. "They had just lied and lied to me, trying to brush me aside to do inseminations at home as some form of excuse. But once they found themselves against the wall, they had no choice but to tell me they flat-out wouldn't do it." So Benitez sued.
Benitez's is far from the only case brought by a woman turned down for fertility services. Kijuana Chambers, a single blind woman living in Denver, Colorado, was eventually turned away from her fertility clinic. Among the reasons cited at trial by one of the clinic's doctors: She was prone to emotional outbursts; she had dirty underwear. Chambers lost her trial in the U.S. District Court in Denver in November 2003. Last summer, the 10th Circuit Court of Appeals declined to rehear her case.
Screening at fertility clinics is not just a concern for gays, lesbians, and the disabled. Women over 39 and women with severely compromised fertility are commonly turned down for services or told they won't be treated unless they agree to use donor eggs. This is largely a matter of economics. Assisted reproduction is a $4 billion-a-year business. The average cost of a single cycle of in vitro fertilization, including medications, egg retrieval, sperm washing, fertilization, incubation, and embryo transfer, is $12,400. Given all the failures and repeat attempts, the average amount spent per baby born through IVF in the United States is much higher: $100,000. Few insurance companies pick up the tab, so patients themselves decide where to spend their considerable money, and they do this largely based on a clinic's success rate. As a result, many doctors try to game the system, producing high "live birth" success rates by cherry-picking patients. Before being accepted by a clinic, a woman must submit to a battery of tests to determine things like the level of follicle--stimulating hormone on day three of her menstrual cycle. Get a number over 12, and she's out of luck.
According to Dr. Geoffrey Sher, founder and medical director of the Sher Institute of Reproductive Medicine, the largest chain of privately owned fertility clinics in the world, almost any clinic that can afford to turn down patients does. "I'd like to think most doctors try to be honest. The problem is, you're confronted with the reality that if you don't get high success rates, patients don't come to you."
"How much selecting is going on?" I asked.
"How much is a lot?"
the practice of screening at fertility clinics poses a simple yet difficult-to-answer question: Should there be a right to reproductive assistance? The very fact that we're asking this question shows how radically things have changed. Up until the birth of Louise Brown, the first test-tube baby, in 1978, if you couldn't reproduce, you couldn't reproduce. You adopted or went childless or spent a lot of time with other people's kids, and that was the end of that. Now, of course, if you want children and they aren't happening naturally, there are many procedures to try: in vitro fertilization, blastocyst transfer, gestational surrogates, donor eggs, donor sperm, donated embryos--the list goes on and on. In recent years, our legal system has had to grapple with such novel, ART-related issues as the parenting rights of the egg donor who is also the ex-live-in lover of the birth mom, the gestational surrogate who refuses to give up the baby, and the couple who refuses to take the delivery of twins from the surrogate. Embryos have been implanted in and carried by the wrong mothers--who gets to bring up the resulting children? In one very sad case, a bachelor hired a gestational surrogate. After delivery, the baby cried an awful lot. The father killed the child in just six weeks.
Amazingly, in the United States, almost no public policy exists around assisted reproduction: what procedures should be legal, how many babies a woman should be allowed to carry at one time, how old is too old for a woman to conceive. The Vatican, on grounds that creating a baby outside of a woman's body is playing God, opposes all IVF. In Europe, the enterprise of technology-enhanced baby-making is subsidized and also well regulated. (Different countries stipulate different benefits: A woman is entitled to two cycles of IVF, a woman is entitled to four cycles of IVF, a doctor will implant one embryo, a doctor will implant up to four.) But the U.S. government has neglected to impose even the most basic medical regulations, in part because politically ART is impossible to touch. Who would possibly stand in the way of families having babies? Yet many procedures, most notably IVF, require producing excess embryos. And if it's unconscionable to create embryos for stem cell research, how can we countenance the thousands being created daily (most of which are ultimately discarded) for couples trying to have kids?
So far in this country no rules have been set. Literally, the only thing you can't do is use embryos created since 2001 for stem cell research in a lab that receives any federal funding (see "Splitting the Baby," on page 45). Other than that, anything goes. Women in their 60s have been assisted in having children. Semen has been extracted, without prior consent, from men who've died. In some states, embryos are treated as material possessions and deemed transferable as part of one's estate; in others, they're treated almost as children and cannot be harmed or destroyed, and, if abandoned, can be implanted by doctors in surrogates' wombs. Regularly the news is filled with stories: first surviving set of septuplets! Woman gives birth to two sets of identical twins! (Miracle, multiple ART births have become so common that just this spring a Missouri couple perpetrated the first sextuplet hoax, soliciting donations of cash, gift cards, a washer and dryer, and a van.) A new technology called PGD-preimplantation genetic diagnosis--allows doctors to test for genetic defects just three days after fertilization, when the conceptus, not yet technically an embryo, is still in a petri dish. And that's going to pose a whole new set of moral quandaries: Is it acceptable to screen against cystic fibrosis? What about mild disabilities, say, dyslexia? And what about sex? "To face this issue frontally and regulate," says Northeastern University legal scholar Wendy Parmet, "we first, as a society, need to come to terms and acknowledge the practice, and say, 'IVF and any of the ART procedures are okay except when.... ' We haven't done that, nor are we aided by the fact that so much of the fertility industry takes place outside the centrifugal force of insurance." So, for now, the particularities around the right to give birth, like the particularities around the right to die, are contested and ill defined. "What we've got," says Parmet, "is a lot of talking and debate going on in professional societies, and not a lot of law."
The level of public debate about ART is so far behind the technology that we haven't even decided who should be deciding what's legal and just: the government, doctors, or patients themselves. Lawyers and bioethicists are fond of explaining that there are positive rights, known as entitlements, and negative rights, known as liberties. With regard to baby-making, a negative right is the right to do as you please, as long as it's consensual. No matter how poor an idea, no one will stop you from a drunken dalliance and parenting the child who may result. But there is no entitlement to have a baby. It goes without saying: The state will not furnish anybody a child. Nobody can demand a spouse for the purpose of creating a child, and, in this country at least, even if you do have a spouse, that spouse is not required by law to reproduce. All we seem to have agreed upon as a society is that reproducing is deeply meaningful and important, and that any attempts to keep people from doing so--i.e., forced sterilization--are abhorrent and illegal. (The 1942 case of Skinner v. Oklahoma struck down compulsory sterilization even for repeat sex offenders on the grounds that reproduction is "one of the basic civil rights of man.") Internationally, Article 16 of the United Nations Universal Declaration of Human Rights includes "the right to found a family." The International Covenant on Economic, Social, and Cultural Rights states that everybody has the right to enjoy the benefits of scientific progress. But legally this does not add up to a positive, enforceable right to access reproductive technologies. In the United States, there is not even a positive right to basic health care.
Which raises an interesting question: Should infertility be viewed as a medical problem? Says University of Wisconsin Law School bioethicist Alta Charo, "For many years infertility was not regarded as something sufficiently serious that it necessitated care. Treatment was discretionary, not necessary." RESOLVE and other infertility rights groups have worked hard to change this, as have ART clinics. Yet defining ART as a medical treatment is a bit forced, because "if you use the classic situation of a fertile woman with an infertile male spouse, she never had a fertility problem to begin with," notes Charo. A more logical line of reasoning might be to view her as having a social, not a medical, dilemma. She does not want to have sex outside her marriage--that's why she can't get pregnant. Should society step in to help her? Should this be covered by insurance?
To get around this dilemma, those in favor of greater access to ART like to position infertility as a disease of a couple--a rather unconventional diagnosis. But even if "an infertile couple" gets under the umbrella of medicine, there's no guarantee of particular services. "You have to start with the fact that in the United States of America, in terms of health care, with certain limited exceptions, you have a right to nothing," says Parmet. "If I want a hip replacement and I don't have the money"--be it through insurance or otherwise-"I don't get a hip replacement." And, except for "certain nono reasons," Parmet notes, all doctors, including fertility clinicians, are free to choose whom they want to treat. "Anybody can deny me care because my name is Wendy, but they can't deny me care because of my religion or my race."
In some states, like California, where Benitez was seeking care, doctors also cannot turn patients away due to sexual orientation, even if the doctor's objection stems from her own religious beliefs. (Perhaps because of this, when North Coast Women's Care challenged the initial ruling favoring Benitez, Dr. Brody claimed she refused to treat Benitez not because Benitez is a lesbian but because she's unmarried, as marital status is not a protected category. North Coast won this round of appeals.) Says Jennifer Pizer, senior counsel at Lambda Legal and Benitez's lawyer, "The courts say that the religious believer must pick a way to make a living that doesn't put them in conflict with society's rules." In other words, a fertility doctor can choose not to treat a patient for many reasons--the patient is not a good candidate for the procedure, the patient is a jerk, the doctor is too busy--but not because of the patient's race, religion, sexual orientation, or country of origin. And while a doctor can abstain from doing a particular procedure--say, in utero inseminations or IVF--across the board, such a doctor would presumably have a hard time practicing infertility medicine.
Some conservative legislators are trying to restrict access to fertility services for certain kinds of patients--most notably, single women and gays--and limit what can be done with embryos that result from IVF. Virginia tried to prohibit doctors and other health care professionals from helping single women get pregnant. (The law didn't pass.) Arizona has attempted to ban the sale of human eggs. (A bill is pending.) Louisiana has succeeded in making embryos "juridical persons," meaning they cannot be intentionally destroyed, and if they are abandoned, the clinician has discretion over what to do with them. Using ART regulation as a backdoor attack on abortion rights is a worrisome trend, says reproductive legal scholar Susan Crockin. "We're starting to hear a lot of talk about embryo adoptions even though very few are actually happening. This way, in the public's mind, you elevate embryos to fetuses, and fetuses to children, and then you can't do things with embryos."
after Benitez severed ties with the North Coast Women's Care Medical Group, she also switched jobs, because her old one required her to be in contact with North Coast and, she told me, she "couldn't handle seeing and hearing about things that they were doing for other couples that they wouldn't do for me." She fell into a depression, in part from worrying whether or not she and Clark should spend their limited earnings on ART. Still, she did not give up on her dream of having a child. Benitez grew up in a family with 9 siblings, and never imagined not having kids. She got referred to another ART practice. Her treatments were no longer covered, but she and Clark decided to pay out of pocket for in utero insemination, twice. When Benitez still failed to get pregnant, they stepped up to pay for IVF. Luckily, Benitez conceived on her first IVF try. The couple's first child, Gabriel Benitez-Clark, is now age four.
For patients like Benitez, the best and worst thing about seeking fertility services in the United States is that ART is regulated, such as it is, by the free market, and while not every doctor will treat a nontraditional client, for the right price somebody probably will. That somebody, in fact, is frequently Geoffrey Sher, a man whose operation is so big and whose reputation is so well established he can afford not to manipulate his success rates. Sher's website, haveababy.com, receives more than 1 million hits a month. His institute, composed of 10 franchises, offers a popular "outcome-based" fee structure, allowing any woman up to the age of 42 to pay a lump sum up front and receive a percentage back it she tails to have a baby--not just get pregnant, have a live baby--after three tries.
Sher is a wildly charismatic man, with a sturdy build, thinning dark hair, and a thick South African accent. The morning I met him, at his headquarters in Las Vegas, he was wearing jeans, sneakers, and a white lab coat and feeling full of his powers as a babymaker. "Ten transfers today!" he announced, as he sat down in a windowless office with walls of white boards for a working lunch with his longtime business partner, Dr. Ghanima Maassarani. Sher believes every person who's medically fit has the right to access his services. In his 24 years of operation, he's turned down only a few patients for nonmedical reasons--one being a woman who wanted to harvest her eggs, fertilize them, freeze the embryos, have a sex change, find a woman to marry, and then have his wife carry his babies. Sher came to his open-door philosophy in the early 1990s after a 51-year-old woman approached him with her 43-year-old husband. The woman wanted to get pregnant with a donated egg, and Sher told her she was too old. Maassarani retold the story: "She turned around and said, 'But who are you to judge? If my husband were 51 and I were 43, you would not have said that.' We learned a lesson: Don't make any judgments. As long as the woman is healthy, as long as she has medical clearance, as long as she can hold and carry on a pregnancy, why not?"
Other doctors take differing views. In 2005, Fertility and Sterility published a study concerning the screening practices in ART programs. Many clinics have been reluctant to discuss screening because, the authors wrote, "well-intended efforts to prevent the birth of a baby to a parent with a known history of violence against children could perhaps slide into discriminatory or eugenic practices." According to the study, 59 percent of ART program directors agreed that everyone has the right to have a child, yet only 44 percent agreed that fertility doctors don't have the right to decide who is a fit parent. Forty-eight percent of responding directors said they were very or extremely likely to turn away a gay couple seeking a surrogate, 38 percent said they would turn away a couple on welfare who wanted to pay for ART with Social Security checks, 20 percent said they would turn away a single woman, 17 percent would turn away a lesbian couple, 13 percent said they would turn away a couple in which the woman had bipolar disorder, 9 percent said they would turn away a couple who wanted to replace a recently deceased child, 5 percent said they would turn away a biracial couple. Are fertility clinic directors really the best people to decide who will be a good parent?
Given such a paternalistic stance, one might assume that fertility doctors would undertake only those procedures that ensure healthy outcomes, but many do not. In the early days of IVF, most doctors' approach to embryo implantation was, as Sher puts it, "Throw a bunch of spaghetti against the wall and see what sticks." In 1998, for instance, Merryl Fudel, a single, five-times-divorced, part-time airline reservations agent, 55 years old, sought and procured fertility services (IVF with donor eggs) and gave birth to quadruplets. This seems like a miracle, until you learn that the babies were born three months premature, one died eight days after birth, the others will likely have ongoing medical problems, and the hospital bill, largely footed by the state, topped $2 million in the babies' first four months.
In 2004, a review of scientific literature conducted by Johns Hopkins, the American Academy of Pediatrics, and the American Society for Reproductive Medicine found that the biggest risk of IVF is the one we're all aware of anecdotally: multiple births. More than 32 percent of IVF births involve "multiples," or more than one baby, compared to 3 percent in the general population. Nearly anything that can go wrong with a pregnancy goes wrong more often with "higher order births"--and the more babies a woman is carrying, the more frequently things go wrong. Babies born as twins are hospitalized twice as long as singletons, and over the first five years of life, their medical costs are three times as high. Babies born as triplets have a significantly greater number of cognitive delays. The average cost of a triplet birth exceeds $500,000.
Within academic medicine it is widely accepted that in most instances clinics should be practicing "single embryo transfer"--that is, placing only one embryo in a prospective mother's uterus instead of two, three, or more. Single embryo transfer is mandatory for most women in many European countries. The practice is voluntary and unpopular in the United States.
Why? Because by definition when a woman arrives in a fertility clinic, she very much wants to have a baby and has not had an easy time doing so. Since most families are paying for IVF out of pocket, if a woman wants more than one kid, there's a big economic incentive to go for two at once. ("They all want twins," says Rene Danford, patient coordinator for the Sher Institute. "Boy-girl twins. That's what they want. You're done!") And while multiple embryo transfer is no more likely to result in a baby for women under 36--it's just more likely to result in multiples--for older women it raises what can be pretty bleak odds, making the client happy and bolstering the clinic's success rates. The same is true of using donor eggs. In our pay-to-procreate system, the fertility doctor is also a businessman. Sher, arguably the best fertility businessman out there, speaks for many when he says, "My philosophy is it's not our job to tell people what to do. If someone says, 'I want four babies,' the answer is no. If someone says, 'I want three babies,' the answer is no. If someone says, 'I want two babies' and she has half a uterus because she was born that way, the answer is no. But if somebody says, 'I want to have twins' and she's healthy and I see no reason why she'll have a particularly complicated pregnancy, the answer is, 'Okay, I can do that.'"
Were ART covered by insurance, insurers could pressure doctors into lowering the multiple birth rate, and everyone would save money--including insurers, because ART is relatively cheap compared with births of multiples. It would also help mitigate against the biggest injustice in the American ART system: the fact that if you are wealthy and infertile you are much more likely to have a baby (or two, or three) than if you are infertile and poor. But presently only 15 states mandate group insurers or HMOs pay for any form of ART; of those only 7 insist insurers pay for at least some IVF, and of those 2 mandate the IVF benefit only if a spouse's sperm is used to fertilize his wife's egg--no donated egg or sperm, lesbians or singles need not apply.
European governments have stepped in and regulated, to mixed results. In 2003, Italy enacted Europe's most restrictive policy, stipulating that only long-term heterosexual couples have a right to access IVF, no more than three eggs can be fertilized at any one time, and all fertilized eggs must be transferred to the uterus simultaneously. Italy has since seen pregnancy rates for women utilizing IVF drop from 38 to 30 percent. In 2004, England began limiting all doctors in all cases to implanting only two embryos. Zero women over 44 gave birth in England last year.
To skirt such rules, a Danish company plans to build a fertility ship, sailing in international waters, where people could sidestep their own country's regulations and pay for the services they want--be it transfer of multiple embryos or insemination with anonymous sperm. Fertility tourism already exists-middle-class Americans go to Israel, where services are cheaper; wealthy Europeans come here, where more treatment options are available.
None of this, however, answers the question: Is there, or should there be, a right to reproduce? Though perhaps thinking in terms of rights is not the best way to frame the problem. As Mary Warnock, former chair of the Committee of Enquiry Into Human Fertilization and Embryology in the United Kingdom, points out in her book Making Babies: Is There a Right to Have Children?, deep wishes easily slip into the language of rights, and patients who feel themselves to have rights over their doctors fundamentally change the doctor-patient relationship. Our system is already plenty skewed by the idea that if you throw enough money at your infertility problem, you will conceive and the problem will go away. "The patient becomes a client, the doctor obliged to provide what the patient wants. The doctor becomes more like, say, a hairdresser," Warnock writes. "People may well listen to the advice of their hairdressers, and will certainly rely on their hairdresser's skill, which they do not themselves possess. But in the last resort the hairdresser is the servant of the client."
Benitez's case is again on appeal and could reach the California State Supreme Court this fall. Lead counsel Pizer sees the case as seeking to establish a seemingly simple point: that the same framework used to protect people from discrimination in all public settings should also be used to protect people from discrimination in a fertility clinic. Yet at the heart of the case is a more emotional question: "Who is deemed acceptable to be a parent?" asks Pizer.
Benitez views her own case in less theoretical terms. "I want to make sure that these doctors can't do this to anybody else. It was horrible." She is not looking forward to taking the stand, nor to seeing Dr. Brody's face. But for now, at least, she has little time to worry. Ten months ago she gave birth to Shane and Sophia Benitez-Clark, a pair of twin girls conceived through IVF.
Amount that Americans spend each year on assisted reproductive technology: $4 billion
Chances that ART will be successful: 1 in 3.
Average cost of a single cycle of in vitro fertilization: $ 12,400
Average amount spent per baby born through IVF in the United States: $ 100,000.
In a survey of fertility clinic directors:
59% agreed that everyone has the right to have a child.
44% believe that fertility doctors don't have the right to decide who is a fit parent.
48% said they were very or extremely likely to turn away a gay couple seeking a surrogate.
38% would turn away a couple on welfare who wanted to pay for ART with Social Security checks.
20% would turn away a single woman.
17% would turn away a lesbian couple.
13% would turn away a couple in which the woman had bipolar disorder.
9% would turn away a couple who wanted to replace a recently deceased child.
5% would turn away a biracial couple.
Approximately 1 in 3 births that result from IVF involve "multiples," or more than one baby.
In the general population, only 3% of births involve multiples.
Babies born as twins are hospitalized twice as long as singletons, and over the first five years of life, their medical costs are three times as high.
Babies born as triplets have a significantly greater number of cognitive delays. The average cost of a triplet birth exceeds $500,000.
For women under 36, a single embryo transfer is just as likely to result in a live birth as is transferring multiple embryos.
Only 15 states mandate insurers or HMOs pay for any form of infertility treatment.
Only 7 states insist insurers pay for at least one cycle of IVF.
Of those, 2 states mandate the IVF benefit only if a spouse's sperm is used to fertilize his wife's egg.
To goose success rates, clinics encourage multiple embryo transfers and donor eggs, especially for older women. Among patients using their own eggs, the chances per IVF cycle of having a live birth are about:
37% for women age 34 and younger.
30% for women 35 to 37.
20% for women 38 to 40.
11% for women 41 to 42.
4% for women 43 and older.
But among women using donor eggs and fresh (nonfrozen) embryos, the live birth rate is 49% whether the patient is 45 or only 32.
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|Title Annotation:||THE RIGHTS OF REPRODUCTION|
|Date:||Jul 1, 2006|
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