When Eric Schwartzman went in for a medical exam six months before his wedding, he didn’t expect to hear he was infertile. After the examination, the doctor suggested Schwartzman have a sperm-count test. Schwartzman thought nothing of it. Then the results came in. He was diagnosed with azoospermia, a condition in which the man produces virtually no sperm. “Don’t plan on having kids naturally,” his doctor told him. “You can just adopt.”
Schwartzman and his wife were devastated. He offered to call off the wedding, but she refused. Instead, they went to a fertility clinic, where Schwartzman underwent two testicular biopsies to retrieve sperm for in vitro fertilization (IVF). As a backup, his doctor suggested the couple select a sperm donor, and they agreed without really taking the possibility seriously. But when two IVF cycles failed, he and his wife reconsidered.
Schwartzman is now the father of two “half-adopted” children, as he calls them, both conceived through donor insemination. Most of the time, he says, he focuses on day-to-day life — “getting them potty trained” and the like. But he sometimes wonders what effect their unusual beginnings will have on them.
It’s a question that many have begun to ask as the first generation of donor-conceived (DC) offspring has come of age and begun to speak out about its circumstances. Media accounts — some moving, some sensational — have described the novel challenges facing these children. Online, DC offspring have formed a subculture for “lopsided” or “half-adopted” kids, setting up support groups and registries where they can find potential siblings and talk through the “genetic bewilderment” many feel at not knowing where they come from.
DC offspring and their parents are now calling for reforms to an industry they see as indifferent to the concerns of the children it helped create. Ground zero for this battle is the question of donor anonymity. DC activists want to open records, arguing they have a right to know about their origins. The industry responds that removing anonymity will effectively mean the end of donor conception, leaving more infertile couples, like the Schwartzmans, without the hope of ever having their own children.
A compromise of sorts might be reached in the form of what are called open-donor programs. In an open-donor program, a donor agrees to be identified to the offspring, usually when he or she turns eighteen. The offspring and donor can then decide whether they want to make contact and what kind of relationship they would like to have. Proponents of these programs say they make things easier on children, who will not have to grow up torn by the kind of identity issues that plague other DC offspring. As one website for an open-donor program reassures parents: “Your child will not grow up fantasizing that their ‘father’ is the lost King of Bavaria or Charles Manson.”
Critics of donor conception have long contended that children should have the right to know their origins and the identity of their biological parents; these new open-donor programs make that possible. And by responding to consumer demand, sperm banks and egg donation programs have likewise begun to undertake some of the other reforms conservative critics of donor conception have argued for: more regulation and transparency, limits on the number of offspring, better screening of donors, and more research into outcomes for DC offspring. But these same clinics have also been responsible for upsetting traditional ideas about family and parenthood, and for moving us toward accepting an individual right to a child.A Grassroots Revolution
The first open-donor program in the United States had an inauspicious start. In the early 1980s, the Oakland Feminist Women’s Health Center began offering fertility-awareness classes to help women prevent pregnancy. The organizers soon noticed that a significant subsection of the attendees were using the class for the opposite reason: They were tracking their cycles not to prevent pregnancy, but to achieve it.
This subsection — primarily lesbians and single straight women — couldn’t turn to doctors or to fertility clinics for help. As part of what is now called the “socially infertile,” they did not have access to the newly thriving assisted conception industry. No sperm bank would serve an unmarried woman, heterosexual or homosexual. Desperate to have a child, some took a do-it-yourself approach, enlisting a male friend or relative as a donor and using information gleaned from pregnancy prevention classes, like the one at the Oakland Health Center, to inseminate at home.
Seeing these women, the organizers at the health center had an idea, one that would have far-reaching consequences for the way donor conception is practiced today: Why not start a sperm bank at the clinic? After checking with their lawyers, the health center administrators gave the project the go-ahead. In 1982, The Sperm Bank of California (TSBC) opened for business.
“It was definitely very grassroots,” says Alice Ruby, the bank’s executive director, of TSBC’s start. From the beginning, TSBC began challenging the old sperm bank model. Unlike previous banks, TSBC was strictly not-for-profit, and it remains the only nonprofit sperm bank in the United States today. True to its feminist roots, TSBC was not only the first bank to serve unmarried women, it was also the first bank to teach them how to inseminate themselves. The bank’s practices regarding donor offspring would soon influence the broader industry, too. TSBC limited the number of offspring born to a single donor to ten families worldwide, spurring the industry — which had often destroyed records of donor-insemination procedures — to set similar limits. (Currently, the American Society for Reproductive Medicine [ASRM] recommends a limit of 25 live births per donor per population area of 800,000.) In 1997, TSBC created a donor sibling registry, the Family Contact List, to match up families using the same donor. TSBC has also been on the forefront of research into the lives of DC families; before the clinic’s first information release to offspring, it created an Identity-Release Task Force to develop protocols and perform research on families with DC children who could find out their donors’ identities.
The biggest shake-up to the sperm banking industry came in the form of a catalogue. TSBC was one of the first banks to offer detailed, non-identifying information about donors to its clients. Moreover, the bank let the patient — not the doctor — choose the donor that would father her child. Whereas patients at most banks would be lucky to obtain the donor’s ethnicity or his height, TSBC provided twelve-page questionnaires filled out by each donor, including information about his medical history, occupation, religious affiliation, and even whether he was right- or left-handed.
For all its trailblazing innovations, TSBC was not looking to revolutionize the sperm-banking industry. It was simply trying to meet the needs of its clients. TSBC had an unusual client base — one that sperm banks had never served before — so it is no surprise that TSBC developed as differently as it did. Perhaps the single most important difference between TSBC’s clients and those of other banks was that TSBC’s clients always planned to disclose their children’s origins — because, as Ruby explains, “single women and lesbians have to explain to their children something” about the way they were conceived.
Historically, sperm donation has been a secretive practice. In the first documented case of donor insemination — performed in 1884 by a Philadelphia doctor — neither the woman (who was anesthetized for the procedure) nor her husband were informed of the use of donor sperm. (The doctor later disclosed the experiment to the husband; the wife was never told.) Although donor insemination became more common after World War II, it was still kept quiet both to protect the man from the stigma of infertility and the child from the stigma of illegitimacy. Couples were counseled never to tell their children; some doctors even mixed the donor’s and husband’s sperm so as to leave the question of the child’s parentage open. (Today, such a practice would be considered unethical and — given advances in genetic testing — pointless.) The secrecy surrounding donor insemination made questions about the donor’s identity moot. If parents never disclosed, the reasoning went, why did they need to know anything about the donor, apart from the sketchiest physical details? (That reasoning often worked the other way around as well: Since parents knew so little about their donors, secrecy advocates argued, why should they disclose and burden their children with unanswerable questions about their biological origins?)
While disclosure was a choice (albeit one rarely chosen) for heterosexual couples, it was an imperative for TSBC’s clients. Since these women couldn’t pass off their children as their own in the way heterosexual couples did and still do (the majority do not disclose), they had to decide what and how to tell their children about their conception, including what to tell about the donor. TSBC’s clients therefore wanted to learn everything they could about their donor — hence the exhaustive donor catalogues. Soon, though, clients began asking for something more: They wanted to be able to tell their children who the donor was. In 1983, TSBC launched its “identity-release” program, the nation’s first open-donor program.
TSBC was well aware of the magnitude of the experiment it was undertaking. Other banks warned TSBC founder Barbara Raboy and her staff that identifying donors would be a disaster for the industry; and initially, the sperm donors were not enthusiastic: Whereas 80 percent of parents requested an “open donor,” only 40 percent of donors agreed to be identified. (Today, three quarters of donors at TSBC are open donors.)
The staff worried too that identifying donors might lead to a “legal quagmire” for those involved in the program. Since most of the parents participating were single women and lesbians, significant legal questions concerning custody and parental rights were unaddressed. (California state law would later establish clear rules for sperm donation, waiving all parental rights and responsibilities for donors to licensed sperm banks.) Could the donor’s agreement to be identified be interpreted by courts as an intention to parent? What if an unmarried mother died or was incapacitated — would the donor be required to step in as a parent? What if the donor sought to assert his parental rights? To protect both parents and donors, TSBC decided to release information only once the offspring had reached the age of majority.
Although the creation of the identity-release program had largely been driven by the clients’ desires, it was decided that the crucial moment — the release of the donor’s identity — must be driven by the wishes of the offspring. Only an adult offspring, not the parents or donor, would be able to obtain identifying information: his address, birth date, even driver’s license and Social Security numbers.
The first generation of children born under the identity-release program turned eighteen in 2001. No one knew what to expect. As Raboy told the BBC on the occasion of the bank’s first donor-offspring meeting in 2002: “I think it was very risky in terms of identity release because we didn’t really know how it would work out long term. This experiment — if we call it a social experiment — will forever be an experiment because we have generations of children who are themselves going to be having their own children who are probably going to be sharing with their mates how they were conceived ... it’s going to take decades.”Niche Markets
Rainbow Flag Health Services, located in Alameda, California, proudly advertises itself as “the smallest sperm bank in the United States.” The bank has only two employees: Its president and founder Leland Traiman, a nurse-practitioner, performs the medical procedures; his longtime partner, Dr. Stewart Blandón, serves as medical director.
Rainbow Flag opened for business in 1995 with an unusual pitch: It specializes in gay and bisexual donors — barred from donating at most banks due to concerns about AIDS — who agree to be identified to the mother when the child is three months old. Traiman had long fought for the rights of gay men and women to have children. His clinic, he hoped, would provide a way for them to do so: “I wanted there to be family in my community,” he explains. But he soon recognized a business opportunity, too. “When you start a small business, you have to identify your niche market,” Traiman says, “and my niche was lesbians who wanted to know who the donor was.”
What was a small niche market when Traiman opened his bank has now become a sizeable segment of the sperm-banking business. The so-called “gayby boom” of the 1980s helped pave the way, winning greater social acceptance for alternative family styles. But perhaps the biggest factor for this sea change in the sperm-bank industry was cold, hard economics. With the introduction of intracytoplasmic sperm injection in 1992, fewer heterosexual couples — then the industry’s primary client base — had to resort to sperm donors. Men who had once been told they would never have their own children were suddenly — thanks to advances in medical technology — becoming fathers.
With their old client base dwindling, sperm banks began looking for new customers. They soon realized that clinics like TSBC and Rainbow Flag had inadvertently happened upon a new business model, one that would prove very lucrative.
Over the years, the customer base for sperm banks has shifted from 90 percent heterosexual couples to 55 percent single women and lesbians. Two-thirds of TSBC’s clients are lesbians. Fairfax Cryobank, the second-largest cryobank in the United States, has seen its single-female clientele jump 20 percent in the last decade; such women now account for 60 percent of its client base. At California Cryobank, the industry leader, 40 percent of its clients are lesbians or single women. Meanwhile, the number of sperm banks in the U.S. has increased threefold, and the fertility industry has grown into a $3.3 billion business, with sperm-banking accounting for $75 million of that.
Clinics that once turned away single women and lesbian couples now began aggressively courting them. The new customers, they found, had advantages. Since most insurance policies do not cover infertility treatment for the socially infertile, these clients typically have to pay out-of-pocket — meaning banks can charge at higher rates than insurance would normally reimburse. While activists are happy to see more banks accepting single and lesbian women, they realize that the industry’s new willingness to take on socially infertile clients has more to do with shifting business realities than with changing values. As feminist scholar Amy Agigian writes in her 2004 book Baby Steps: How Lesbian Alternative Insemination Is Changing the World, “In the struggle between capitalist imperative and heterosexist prohibitions, the balance seems to be tipping toward the almighty dollar, with lesbian dollars increasingly welcome.” Or as one clinic worker wryly told me: All of a sudden, everyone got a lot more progressive.
As lesbian and single women have become a larger portion of the sperm bank clientele, the number of open-donor programs has exploded. According to TSBC’s research director, Joanna Scheib, there were three times as many open-donor programs in 2006 as there were in 1996. Not all open-donor programs are alike, however. Many clinics, like TSBC, do not release information until the offspring turns eighteen; Rainbow Flag releases the donor’s identity three months after the child’s birth. Some obligate the donor to a meeting; others do not. Banks might also offer “willing-to-be-asked” programs, in which the donor retains the right of refusal to a request for contact.
The proliferation of open-donor programs is an encouraging sign to many. Parents of DC children hope that the new openness will help diminish the stigma surrounding donor conception. For the mental-health community, the programs are a welcome end to the secrecy and feelings of betrayal that riled many DC families. For advocates of children’s rights, they could be the first step toward banning anonymity altogether. For DC offspring, they might just be the beginning of the end: Perhaps as more DC offspring are given the right to know their biological parent, the courts will unseal their records too — just as they did for adoptees.Secrets and Lies
John Weltman, the president of Circle Surrogacy, an egg donation and surrogacy agency in Boston, is part of a growing and increasingly vocal minority within the assisted-conception industry that opposes donor anonymity. He takes great pride in the fact that the majority of his clients — about 90 percent — opt for a known egg donor after undergoing the extensive screening and counseling process. “Most people walk into this process not thinking about the child,” Weltman says. They’re focused on the short term — having a baby, getting insurance to cover treatments, choosing the “right” donor — not on the hard questions that Weltman assures them will come up in the long term when the baby grows up.
They are questions with which Weltman has plenty of personal experience. Along with his partner of more than twenty years, Weltman is the father of two sons, ages fourteen and twelve, both conceived with the help of a traditional surrogate. Like other gay and lesbian parents, he knew from the start that his children would have questions about their unusual beginnings. He and his partner agreed to always be “open and honest” with them: “The earlier you tell them, the less of an issue it is. It’s just their story.” In some ways, Weltman says, disclosure is easier for gay parents; they can let the children lead the process — addressing questions as they come along — whereas heterosexual couples have to initiate the discussion.
Those questions began when his oldest son turned three, and began asking who his and his younger brother’s “mommy” was. Weltman told them a little about the surrogate, Susan, and explained that she was in California, an answer that satisfied them for a while. Then they began asking to meet her. Despite their resolve to always be open with their children, Weltman and his partner felt some trepidation about introducing their sons to her. They worried that a meeting — good or bad — might upset their formerly happy family: “If they really liked her, they’d miss her. If they didn’t like her, they’d be disappointed.” But the two put aside their doubts and arranged the meeting.
The meeting itself came as a relief. The children liked Susan and her daughter — their half-sibling — but they didn’t miss her. Instead, Weltman says, “the mystery [was] gone”: The children had met their biological mother, and their curiosity about her was satisfied. As the sons have grown older, the family has kept in touch, sending birthday cards and Christmas cards, but the relation is more that of an extended family — think of a fun but distant aunt — than that of mother and child.
Weltman doesn’t deny that parents using donor conception have valid concerns: Will my children still love me even if I’m not the biological parent? Will they want a relationship with the donor? What if the donor disappoints them? Or worse, what if they like the donor better? But his experience, he believes, shows that most fears are overblown — as were his about his sons’ first meeting with Susan — and that most children, so long as the parent is honest with them, will adapt. Initially, Weltman tells me he and his partner did not want to tell anyone — including their sons — who was the biological father of their children. (Each fathered one of the children.) But, he soon realized, the very secrecy surrounding the question made it a subject of much more consuming interest than had they simply been open from the start. They decided to tell, and as soon as they did, he says, the question went away. “When you don’t tell people, that’s all they talk about,” he tells his clients, “but if you tell them, they don’t talk about it anymore.”
Weltman’s hypothesis that secrecy causes many of the problems associated with donor conception is one that many researchers are trying to test. It’s not an easy job. The fact that the majority of offspring are unaware of their biological origins poses serious obstacles to researchers looking into outcomes for DC offspring. Response rates are often low since many parents don’t want to risk being “found out.” Many studies of the psychological wellbeing of DC offspring have been done with very young children — where outcomes seem largely positive — but researchers rarely get to do follow-ups since parents don’t want to disclose. Thus, longitudinal studies — the gold standard for social science work — are nearly impossible.
Still, there is some evidence that Weltman is on the right track. Offspring who find out later in life tend to feel more resentment and anger toward their parents than those told at a young age. At TSBC, Scheib has recently done a study of adolescents with identity-release donors — the first of its kind. The sample group was small — only twenty-nine offspring responded — but the majority of offspring reported feeling comfortable with their origins. Although most offspring say they are curious about the donor, Scheib reports that very few of the offspring eligible to receive information about their donor have done so: “There are not a ton of people knocking down our doors for identity-release.” Many offspring explained that they were simply busy with other transitions in their lives, like graduating from high school and applying to college. At least one offspring that Scheib knows of has chosen to wait until his younger sibling turns eighteen so that they can go through the process together. Scheib suggests that the small number of requests might indicate that simply having the choice to meet the donor is more important than actually meeting him or her: “Sometimes I wonder if you give people the option, it’s not a big deal. But if you take the option away, then it becomes a big deal.”
Many parents are hoping that Scheib is correct. Schwartzman and his wife purchased as much information about their donor as they could: baby pictures, medical history, essays, even audio recordings. When Fairfax Cryobank began offering adult photos of donors, Schwartzman contacted the clinic in hopes of obtaining pictures for his children. (In Scheib’s study, the thing offspring most wanted from their donor was a picture.) His hope is that his children may be satisfied with the information they have, and not feel the need to search for their donor. “Perhaps they’ll have some issues about their identity and past answered by some of the data we have, and perhaps for them that’s enough,” he says, but quickly adds, “Maybe not. Maybe it sparks their curiosity even more.”The Child’s Perspective
Elizabeth Marquardt, a scholar with the Institute for American Values and a critic of donor conception, is skeptical of studies like Scheib’s. The small sample size, she points out, is just that — small — and she worries that the offspring in the study (although older than most) are still too young to give an honest account of their experiences. Perhaps, she suggests, they are afraid to show more curiosity or interest in the donor for fear of hurting their parent, particularly the non-biological parent.
Like Weltman, Marquardt’s ideas about donor conception are informed by her personal experience. As a child of divorce, she recalls, “I was my parents’ biggest defender.” Many of the themes of her first book, Between Two Worlds: The Inner Lives of Children of Divorce (2005), are relevant to the experience of DC offspring: the identity issues, the delicate balancing act children feel they must perform between their and their parents’ desires, the feelings of isolation and guilt, the lack of sympathy from the greater culture. “I identify with these people so much,” Marquardt says. Like children of divorce, DC offspring face “the challenge of trying to tell [their] own story in a society that’s saying, ‘You should be grateful. Don’t make your parents feel bad.... Are you saying you wish you hadn’t been born?’”
Marquardt has made common cause with many DC activists online. Currently, she is at work on a new book, My Daddy’s Name Is Donor (forthcoming 2009), which will include a survey of DC adults: “I’m really interested in the identity issues as they come of age, ponder having their own children someday, and as they think more deeply about what families they come from.”
Marquardt hopes her new book will serve as a corrective to other writings about DC offspring, which she thinks focus more on the concerns of adults — parents and donors alike — than those of the children. When Scheib’s study was released under the headline “Reassuring findings from first study on sperm donor identification,” Marquardt was infuriated. “Reassuring to who?” she asked on her institute’s group blog. “Why, adults of course.” She cites one question from the study: “Would you want to ask him for money?” “Whose experience are we concerned about here?” she asked me, exasperated. “That’s not a survey about the inner experience of the [offspring]. That’s a survey about the fears of the adults involved.”
To Marquardt, donor conception is inherently problematic, no matter how openly or lovingly it’s done, since it intentionally separates children from at least one of their biological parents. Take the often-made comparison to adoption, she says. In both cases, children are separated from their biological parents. Adoption, however, is an extreme situation — one that recognizes the loss to the child. “In adoption, your adoptive parents were not the ones who caused this loss — the people who raised you were not the ones who intentionally divided you from your mother and father,” she explains. “In donor conception, the people raising you are also the ones who decided before you were even conceived that these relationships should not matter to you.” Here Marquardt sees a curious contradiction at the heart of donor conception: Love makes a family, we’re told, but parents choose donor conception because they want a child biologically connected to them. If biology matters to parents, Marquardt asks, why wouldn’t it also matter to children?
Marquardt’s hard-line position on donor conception has not won her many fans in the infertility community, who accuse her and other critics of ignoring the pain of childlessness. Even those who feel queasy about donor conception see using an open donor as a reasonable compromise between the desires of adults and children. Some activists have accused Marquardt of homophobia and insisted that conservative opposition to ART is really just a cover for hostility to alternative families. The charge rankles Marquardt, who publicly supports both civil unions and same-sex adoption. “I am an equal opportunity discriminator,” she says. “I am concerned about this technology when it’s being used by anyone — gay, straight, single, married. I don’t argue that a child needs a mother and a father.... A child needs their mother and father. I try to make that distinction all the time, and it gets lost.”
Still, Marquardt does not want to ban donor conception — at least, not at the moment. “I don’t think the way to make change generally is to make things illegal,” she says. “I think changing hearts and minds, probing the research and putting it out there ... is the approach” that will work best. She hopes her book — along with the testimony of DC offspring — will lead parents to reconsider their decision to use donor gametes: “Anytime a would-be parent who is considering donor conception sees writings like mine or others and decides ... maybe [to] adopt instead, I consider that a victory.” At the very least, she hopes to win greater understanding and compassion for the distress of DC offspring: “Whenever possible, [children] need their mother and father, and when they don’t have their mother and father, a compassionate society should recognize that as a loss because that is what children routinely say it is.”Rights of the Child
A number of trends — social, legal, and technological — are driving the industry away from anonymous donation. Whereas DC offspring once petitioned all-powerful clinics in vain for information, they are now simply going around them, using online searches and cheap DNA test kits to find their biological parents. “The Web makes the world a small place,” Weltman says. In face of this information onslaught, Weltman thinks anonymity is doomed: Donors will eventually get found. “It’s going to happen anyway,” he says. “If you number them ... it doesn’t make any difference if you give out no information. People can find each other. It’s happening right now.”
And for all their rhetoric about “protecting donor privacy,” clinics are positively effusive about their donors online. Check the website of any sperm bank or egg donation agency and you will find detailed catalogues of donors, including baby pictures, college majors, handwriting samples, and much more — all online and completely free. That information expands every day as hard-working marketing types think of yet more services to distinguish themselves from the competition. The Georgia-based sperm bank Xytex, for example, was the first to offer baby pictures; it now has a program through which parents-to-be can buy a series of photos of a donor as an adult. Not to be outdone, California Cryobank is currently working on producing short films with donors. The films will include voice-overs and show the donor (neck-down only to protect his identity) participating in favorite activities, like playing soccer.
These “premium services” can be big moneymakers for clinics, but digital sleuths can find plenty of information online for free: donors put all kinds of information on personal Web pages, social-networking sites, job banks, family history sites, and so on. In 2004, a fifteen-year-old boy in the U.K. found his donor using a genealogical research service on the Internet. A clinic representative told me that one client even found her donor by searching for his “favorite quote” (found in his donor profile) on MySpace. Some donors are stepping forward on websites like the Donor Sibling Registry (DSR), an online database through which donors and offspring can connect.
Clinics are furiously trying to stop the gaps. One sperm bank has demanded a donor remove his name from the DSR. Another sperm bank recently brought in private detectives to flag privacy concerns. Still, it’s hard to see how much of a difference such measures will make when the marketing department is adding features faster than the private detectives can take them down.
And if the Internet is a threat to the old anonymity model, courts and legislatures might just deal the final deathblow. Throughout the world, donor anonymity is being curtailed — if not outright eliminated — due to the tireless activism of DC adults and their parents. Offspring have challenged donor conception practices in their home countries claiming they breach the United Nations Convention on the Rights of the Child, which states that a child has the right to “know and be cared for by his or her parents.” Sweden was the first country to ban anonymity in 1985, and over the years, several other nations have followed suit, including the United Kingdom, the Netherlands, Switzerland, Austria, and parts of Australia.
Such legislation — despite the opposition of the industry — might find its way to the U.S. as well. But U.N. decrees on children’s rights may matter less than a legal precedent already well established here in the United States: adoption. Like donor conception, adoption was initially shrouded in secrecy; it was best, experts claimed, that children never know their origins. But as adoptees have come of age and spoken out about their wishes, public opinion has turned in their favor, with courts granting access to medical records and even unsealing adoption records. Just this year, in New Jersey, the state Senate voted to give adoptees access to their birth certificates — and with them, the names of their biological mothers. The majority of adoptions now performed in the U.S. are open adoptions.
“Where the donor conception model is right now is where the adoption model was thirty years ago,” Marquardt explains. Weltman, a practicing lawyer, agrees. The courts, he thinks, will be hard put not to apply the logic of adoptee cases to DC offspring cases. Courts “have opened the door to allowing children to know their [birth mothers],” Weltman says. “They’re very likely in the future to open the doors to let children know their egg-donating parent or sperm-donating parent.” If adoptees have the right to know the identity of their biological parents, many DC activists are asking, why not them, too?
The tricky issue of the right to know one’s own biological origins is not the only question coming before the courts: Many DC offspring faced with puzzling illnesses are suing to obtain their donor’s medical records. In one case, an anonymous sperm donor was forced to testify in a lawsuit against California Cryobank after the family sued, claiming that the bank had failed to disclose that the donor had a family history of kidney disease. Even the detailed medical histories most clinics now offer are still incomplete, merely by virtue of the fact that most donors are young, typically between the ages of 21 and 35. Since many diseases don’t manifest themselves until later in life, the donor might not yet know whether he or she is at heightened risk for breast cancer or heart disease. It’s important for offspring to have “current genetic family history,” Weltman says, “which will change with a 24-year-old woman, because her mother’s 48 and her grandmother’s 72 and they may all be healthy. When she’s 48 and her mother’s 72 and her grandmother’s dead, they’re not all going to be healthy and there’s going to be a whole series of things [that she didn’t] know about when she’s 24.” (The reverse problem may happen, too: if one side of your family has a history of breast cancer, you may feel compelled to disclose to your daughter that she was donor-conceived so as to relieve her worries.)
So long as anonymous donation is available, these concerns will not disappear. As a result, the industry’s screening practices are under more scrutiny than ever before. Most clinics screen for a wide ranges of diseases and genetic disorders — HIV, hepatitis, cystic fibrosis, sickle cell anemia, Tay-Sachs, plus many more — and banks pride themselves on the rigor of their screening processes. California Cryobank reassures would-be parents that it accepts less than 1 percent of the men who apply to become sperm donors. Fairfax Cryobank accepts only 3 percent. Yet cryobanks remind customers this kind of extensive screening has costs. If clinics were required to screen for every testable genetic disorder, many couples would be priced out of donor conception. This defense seems reasonable until one recalls that a bank might sell thousands of vials of sperm to multiple families, meaning a rare genetic disease might imaginably be passed to scores of children. (Egg donors have a more limited ability to create genetic mayhem: The ASRM recommends women donate no more than six times, although some women claim to have donated more than a dozen times.)
In response, parents, offspring, and other public health activists have been pushing banks to create a nationwide registry of donors so they can monitor potential health issues and “retire” donors if a health problem turns up. Many in the industry have resisted on the grounds of donor privacy: What if in the future, they ask, courts demand they make such records public? How then could they make a promise of good faith to protect their donors’ anonymity?
Activists respond that the industry is more interested in protecting its bottom line than its donors — that anonymity is simply more convenient for the industry. For one thing, anonymous donors are cheaper to clinics; there’s no record-keeping necessary, no donors or offspring to track. (According to Scheib, an identity-release donor costs TSBC “at least ten times” more than an anonymous donor.) Banning anonymity too, activists say, would bring to light any number of unethical practices — failing to screen donors properly, exceeding ASRM guidelines for more popular donors, even outright lying about a donor’s medical history — that the industry would rather hide. Kirk Maxey, a former sperm donor, believes he might have fathered over a hundred children during his sixteen-year career. With the Donor Gamete Archive — a nonprofit organization which stores genetic information pertaining to donors — he is trying to force accountability on the industry: “I don’t think [the sperm banks] tell the truth,” he recently told an online magazine. “I don’t think they are careful because they have no real accountability. They hide all their records and no one can catch them unless they blunder over their own mistakes.”
Perhaps the biggest hot-button issue right now is what the ASRM euphemistically calls “inadvertent consanguinity” — that is, unwitting incest. Currently, there is no law in the United States that restricts the number of children born to one donor. ASRM guidelines are strictly voluntary, with clinics left to police themselves. Even when clinics follow all the guidelines, there are significant problems. Since there’s no universal registry of donors, banks have to take a donor’s word as to whether he or she donated previously. A popular donor could easily “max out” at California Cryobank in Los Angeles and then make a trip to the Fertility Center of California in Santa Ana. Sperm banks are also often unaware of how many children are born to a donor since they rely on parents to report back. According to an article in LA Weekly, fewer than half do so, which means clinics likely undercount the number of offspring born to a donor. One mother, upon discovering that her son’s sperm donor had fathered at least twenty-one other children in the area, suggested that her son ask any “serious” girlfriends to take a DNA test.The Business of Making Life
Perhaps the chief reason clinics have long resisted open-donor programs is the fear that the number of men and women willing to donate would decline, threatening the availability of donor conception. If donors cannot be assured their anonymity, they argue, soon there won’t be any donors left. In the United Kingdom, shortly after the 2005 law banning anonymity went into effect, stories of a “sperm shortage” abounded in the popular press.
The numbers offer little guidance on this question. Certainly, TSBC has not had any trouble recruiting open donors: 75 percent of their donors agree to be part of the identity-release program. The majority of Weltman’s egg donors also agree to be identified. These programs may not be anomalies either. In a study of open-donor programs in the U.S., Scheib found that the ratio of open-identity to anonymous sperm donors in a program increases the longer the program has existed.
But in those countries where anonymity has been outright banned, the statistics paint a very different picture. A recent U.K. government report found that the number of donor insemination treatments fell by about 30 percent in 2006 despite a small increase in sperm donors. Most of those new donors, the report found, were “directed donors,” friends or relatives donating exclusively for one couple’s use. Patients without such a donor are now facing wait times of up to two years. The number of sperm donors in the Netherlands has likewise dropped, with women traveling to neighboring Belgium (which still allows anonymous donation) for fertilization. Sweden has seen its donor numbers stabilize, but media reports still tell of women traveling to Denmark to avoid long wait periods for a donor.
Scheib thinks that clinics may simply need time to learn how to specifically recruit open donors. This might be as simple as extending a clinic’s hours. In the U.K., one clinic noticed that the donor pool had changed after the 2005 law took effect: There were now more middle-aged men than college students donating. So the clinic responded by extending its evening hours to better accommodate men coming in after the business day. Educating donors, too, is key. Ruby attributes TSBC’s longstanding success in attracting open donors to the clinic’s strenuous screening and counseling process. “If you look at a lot of sperm banks that offer open donors,” she says, “many of them have very few donors that participate in their open program. I think that has to do with how things are explained to people and how much education and information they are providing to their donors.”
Weltman thinks that clinics are doing a disservice to their donors when they encourage them to remain anonymous. “They don’t make any effort to try to tell the donors of the reality of their own futures: that they’re creating a family, that they’re creating children, that even if they don’t want it, the children could conceivably find them.” Indeed, Weltman claims many choose Circle Surrogacy because it’s “a known agency,” and their first donation with an “anonymous agency” was disappointing: “They didn’t know if the couple got pregnant or not, they never saw a picture of the couple, they didn’t get to be part of that selection process and see whether it was the kind of family to which they’d like to be giving their eggs.”
But openness may not be right for every donor. It’s one thing to agree when you’re in your twenties to be identified to an offspring, but it’s another thing entirely to find that person at your door eighteen years later. How will you explain to your future spouse and family about these potential children? Will you even want them to meet? What if you have not just one or two children, but ten, twenty, thirty children, or more? As one open donor at TSBC explained to the BBC, “The biggest surprise to me was the fact that I have a family, I have a wife, I have a whole bunch of other people who are now in my life, and a decision I made way back then is a decision they’re involved in now.”
Scheib admits there is some truth to the “stereotype” of the college student sperm donor, who is just looking to score some extra beer money. Most would-be donors, she says, initially come to the clinic with the attitude that “I’m going to come here one time, leave my samples, get paid, and leave.” As a result, TSBC requires donors to remain with the clinic for a year before their gametes are used — both to make sure there are no health issues and that they understand exactly what they’re getting into. Donors don’t sign an identity-release contract until their sixth visit to the bank. With the education and screening processes TSBC has implemented, Scheib is confident most open donors will live up to their commitment to be revealed: “If you ask a person and they make that decision,” she says, “then they have that in the back of their mind, after they leave the program and as they form relationships.”
But not all clinics are as scrupulous as TSBC, nor do they offer the same education or support. TSBC is unusual in that it does not pay its identity-release donors extra. (Open donors at some banks can make as much as 20 percent more than anonymous donors.) “We want to make sure the men who participate in the identity-release program are doing it because they believe in the program,” Ruby explains. “We want to make sure that we have the best outcomes for everyone in the long run.” Northwest Andrology and Cryobank takes a different approach: On its website is a picture of a $100 bill. Donors, the bank claims, can make as much as $1,000 a month, and it further advises, “If you do wish to provide your identification to clients, you may be eligible for even higher donor fees.”
With such open donors out there, it might be better never to meet. Weltman often tells clients that choosing an anonymous donor might mean a traumatic experience later if the child ever finds the donor and has the door “slammed in their face.” But this risk remains with an open donor. Perhaps some will make room in their lives for their biological offspring, but many will surely be uninterested in a relationship — to the great disappointment of the children who so longed to meet them. Which hurts more: never finding your donor, or finding him or her and being rejected? Katrina Clark, the daughter of a single mother and an anonymous sperm donor, was ecstatic when she found her biological father, even more so when he agreed to contact. But as they began sharing parts of their lives, he began to feel differently about their relationship. He told her he was getting tired of “this whole sperm-donor thing.” “He’s not comfortable with the situation,” Clark explained. “I don’t know how to make him more comfortable.... I’m trying to understand his perspective, but it’s very difficult to do that. I’m not a donor.” That’s something that Eric Schwartzman, thinking about the future of his own two DC children, worries about — a rejection might feel like being “lost a second time.”
Our longing for children who share at least some of our genes — flesh of our flesh — has led us to employ novel technologies that obliterate traditional understandings of family and relatedness. We have taken the mystery out of the creation of human life, but in so doing, we have created new mysteries — painful secrets that can unravel lives. The needs of the children born of these new techniques have long gone unconsidered — by the parents-to-be, whose gifts of love cannot supplant their children’s desire to know their biological origins and their place in the world; by the clinics, whose business model depended on turning procreation into a faceless transaction; and by the donors, who just walked away. That is now changing, as the open-donor approach catches on. In a way that donor-conceived children never had before, today’s donated generation will have answers — and the solace and new puzzles those answers will bring.
Cheryl Miller, "Donated Generation," The New Atlantis, Number 21, Summer 2008, pp. 27-44.