September 11, 2008

"Donated Generation"

Test-tube baby
© Photographer: Geomateo | Agency: Dreamstime.com

Donated Generation
Cheryl Miller

http://www.thenewatlantis.com/publications/donated-generation

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.


{Adoption & assisted reproduction is, unfortunately, run as a "business" in
our society. It is governed by a supply/demand philosophy, which completely
disregards the rights of the "products" ~ those who are adopted or conceived.
Human-beings should never be viewed as simply a "commodity" ~ yet that is exactly what our laws in America have allowed. "Sealed records" were created by an industry of "professionals" who make their living from marketing for babies
and performing adoptions or fertility services.
Adoption has, unfortunately, become the way to provide a baby for a family, when that should never be its goal. When adoption fails to protect the rights of the adopted individual, and fails to provide homes for children who truly need one (why are there thousands of foster children 'waiting' for an adoptive family while sporting a billion-dollar
industry catering to couples & singles seeking a newborn?) ~ we have lost our
way as a humane society.}


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.

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.”


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.

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. [Only six U.S. states have passed
legislation to restore the rights of adult adoptees to unconditional access
to their original birth certificates ~ we still have a long way to go for
justice to be brought to these individuals]


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 is a 2007 Phillips Foundation Journalism Fellow and
editor of Doublethink magazine. She blogs on assisted reproductive
technologies at TheNewAtlantis.com/Conceptions.

1 comment:

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