Thousands of children conceived by anonymous sperm donation still have no right at all to know their biological fathers. But they are turning to DNA sites to track them down— and Wendy Kramer has made it her very personal mission to helpby Stefanie Marsh / April 3, 2019 / Leave a comment
“This isn’t what the medical community wants you to hear,” says Kramer, “but it’s happening all the time.” The world’s multi-billion-dollar fertility industry is portrayed as a benign facilitator of dreams. For decades, it has neatly reconciled a number of different rights—the right of parents to have a child, the right of a donor to be anonymous and the right of a clinic to make money selling sperm. But for Kramer, an elegant former accountant in her 50s, somebody else’s rights have been trampled along the way: those of the donor-conceived children. “Not only should they be part of the conversation,” she says, “I feel they should be at the very forefront of the conversation. And that’s an idea whose time has come.”
This simple conviction, together with a certain cheerful indomitability, has made Kramer the sharpest thorn in the side of the male-dominated industry. She fights for the rights of the children conceived by sperm donation—and egg or embryo donors too—to know who their biological parents are, regardless of whether the original donation was made on condition of anonymity.
The organisation she set up to do just that, the Donor Sibling Registry (DSR), has 63,461 members and has so far connected 16,779 individuals around the world with their donor parents or half siblings, including around 200 from Britain. While regulations vary from country to country, the idea of donor-conceived children tracking down and perhaps contacting their “anonymous” biological relatives starkly contradicts what donors and recipients have been told by fertility clinics and banks around most of the world. But, says Kramer, “there’s no such thing as anonymity.” It’s an argument she makes with the confidence of a woman who has the tide of technology on her side.
Two changes are transforming the hunt for biological relatives: the internet, which allows far-flung clues to be collated between disparate people and places; and, more recently, DNA testing. “DNA testing has become ‘a thing’ in the States in the last year, everyone is doing it,” Kramer told me, “and I can promise you it will become a thing in the UK, too.” -Ancestry.com alone has sold over 14m kits to people who want to discover more about their roots. The reach is massive: the company says it can provide access to over 10bn historical records which, if you buy its claims, is a significant proportion of all the human beings who have ever lived. It’s accessible, too. At less than £50, the basic tests have become popular birthday and Christmas presents.
In a world where everyone can access the technology needed to unravel one’s own double helix, we’re moving from a situation where DNA tests are used as a quick yes or no in a paternity dispute, towards one in which people are able to track down lost or unknown siblings, cousins and children—and, of course, unknown parents.
Mum’s the word
The history of anonymous sperm donation in the UK stretches back to 1945, when the gynaecologist Mary Barton founded a clinic on Harley Street offering artificial insemination to women whose husbands were infertile. Around 1,600 babies were conceived at Barton’s clinic over the next 20 years, many, it emerged a few years ago, with sperm from Barton’s husband, Bertold Wiesner. Most of these individuals, likely still alive, will have spent their lives either unaware of their biological origins or unable to find out.
Over the second half of the century, more clinics opened—and more children grew up not knowing who one of their biological parents was. Everything about the process was casual and unregulated. Often it was young men, disproportionately medical students, popping down to a clinic, being sent to the toilets with a specimen jar and perhaps a soft porn magazine, and leaving with a tenner. Often, too, fertility doctors used their own sperm, with or without the knowledge of their patients. Some will have been prolific procreators; in one recently uncovered case, DNA tests have confirmed that Indiana fertility doctor Donald Cline has fathered at least 50 people under false pretences.
Egg donation is a much more involved, three-week process, in which the donor undergoes treatment to synchronise her cycle with the recipient’s, stimulates her ovaries to produce multiple eggs and finally has them retrieved. It didn’t become viable until the 1980s, but recent advances in egg freezing technology has since facilitated a sharp rise—there are now around 4,000 IVF treatments a year with (mostly imported) donor eggs annually in the UK.Until the 21st century the anonymity of donor sperm and eggs remained the norm. In an unregulated legal grey area, doctors advised parents to err on the side of secrecy to avoid any repercussions later—despite the risk of accidental incest among the offspring of the most frequent donors. And with the subject of infertility taboo, most parents didn’t need persuading.
A regulator arrived in the form of the Human Fertility and Embryology Authority (HFEA), created in 1991, and with it the first systematic record-keeping, but only on the fact of donor conceptions, not the identities involved. And it initially continued with the old advice about keeping shtum. The British laws were overhauled in 2005, ending the sale of anonymous sperm and its use in fertility clinics. Since then, there has been an onus on the banks and clinics to keep records of the biological parents, and children conceived with donor sperm, eggs or embryos have generally had a right to identifying information about their biological parent when they turn 18—a right that will become effective for the first cohort in 2023-4.
But that still leaves six decades’ worth of Britons conceived with anonymous gametes, born between 1945 and 2005, and there is no way of knowing exactly how many there are. We do know that during the 14 years between HEFA starting to keep tabs and the end of anonymity, 18,000 donor-conceived people were born, most likely from anonymous gametes. The total number of Britons who started life as an anonymous conception is probably in the tens of thousands.
The reformed British laws—which barred donors being paid and imposed a lifetime cap of 10 donations, as well as ending anonymity—so drastically curbed men’s willingness to donate that in 2016 the country’s only national sperm bank was forced to close its doors. In its final two years it had manged to recruit just seven donors. Today, around a third of the sperm used in British fertility clinics comes from overseas. Imported sperm avoids the bar on payments and donations cap. And though clinics cannot import anonymous sperm there is nothing to stop individuals importing it themselves. British clinics are in no -position to monitor foreign banks, where scandals about over-eager or dishonest donors who have lied about their health problems flare up from time to time. And since neither HFEA nor anyone else systematically tracks donor-conceived babies as they grow up, any problematic patterns of inheritance are unlikely to be spotted.
Riddles and roots
At heart, the DSR is a giant cross-referencing detective project. Thousands of people have pooled the few clues each may have: the sperm bank’s name, the donor’s nationality and donor number (if they have one). Once registered, they can also get in touch with each other directly and trade information and tips. They can scroll through thousands of descriptions and make links: can I find other people conceived at the same fertility clinic in the same year who look like me? Might they know who my father is?
One person, conceived in 1998, has logged the brief notes the fertility clinic gave her parents on to the DSR: her donor was “Caucasian British. Height: 6ft 2inchs. Weight: Slim Build. Blood type O+. Light brown hair. Blue eyes. Medium complexion. Three years polytechnic. Driver. Donor said he has a good sense of humour and is likeable.” It’s not much to go on but because the DSR is by far the biggest online community of donor-conceived individuals, there’s a good chance that if she has any donor-conceived half-siblings, they will also register on the site someday. In this way, users can hope to build their family trees backwards.
But it’s the link with results obtained from DNA testing sites that is making it so formidable. Parent-hunters can head to the DSR, and enter all the information on geographical roots and other genetic connections that they’ve obtained. These can then be cross-referenced and shared by the 63,000 other members of the site who have also logged their details. People have found half-sibling matches within minutes and many siblings band together, widening their search on social media—updating their progress on the DSR—in their quest for their biological parents.
Also on the site is an international registry of fertility clinics and individual fertility doctors. And then there’s advice about how to write an effective letter to your biological dad: “Always send a picture. It’s much harder saying ‘no’ once they see the resemblances.”
Click on the DSR’s “Success Stories” and you can read about the fruits of their investigations: “I’m a big brother!” “My daughter and I have found each other.” People have submitted photos of themselves with their new extended families—the physical similarities can be unmistakable, and everyone looks delighted.
There is a feeling of enormous relief when relatives are linked up, says Kramer, “but along with that is confusion and anger: their identity is rattled to the core.”
And what about the anonymous donors? How are they feeling about the prospect of being traced by the biological children they’d been promised would never be able to contact them? In many cases, such donor parent-child reunions have been positive experiences for all involved. And yet most anonymous sperm donors seem to want to remain anonymous—if they didn’t, more of them would have registered with their sperm banks to lift their anonymity. For many men it’s a shock, even a trauma, to hear from an adult biological child whom they were promised they could safely forget.On the Reddit website there is a thread dedicated to men who have been approached by their offspring. “What can I do?” wrote one man recently. “They are nice people, but this is not what I agreed to. I thought that it was a good thing to do and (of course), needed money at the time. It has been traumatic for my partner and I, and I want to do something about it. Any ideas?”
The UK’s fertility establishment seems to have no answers. The HFEA told me it was legally impossible for people to trace their anonymous donors, and that it didn’t have jurisdiction to cover what happens in other countries.
Anonymous donors can avoid DNA sites if they don’t want to be found, but what about their brothers and sisters, sons and daughters, cousins, nieces and nephews? If they’re on a DNA site, it will flag up a match with the unknown donor-conceived child. From there it’s just a Google and Facebook search to find other members of the family.
The age of anonymity, then, is drawing to a close. And in parts of the world, the law is already catching up. In Australia, it was changed to retrospectively erase the anonymity of sperm and egg donors last year. This year Germany is doing the same.
Secrets and lies
I was first introduced to the work Kramer is doing at a psychotherapy conference in London focused on donor-conceived children. The conference organiser, psychotherapist Alessandra Cavelli, told me that she had been spurred by the number of donor-conceived children wrestling with unanswerable questions about their identity, as well as parents burdened by family secrets, who were showing up in the consulting room.
Aside from media frenzy about so-called “designer babies,” there had never been any public debate about the implications of the post-war revolution in fertility science. This left therapists woefully under-prepared to deal with the unique psychological circumstances of donor conceived individuals—for instance, some say that they felt more like a product than a person.
The conference was small and packed: psychotherapists, academics, and a few parents of donor-conceived children made speeches and exchanged ideas. A Cambridge professor, Susan Golombok, presented a study on “Experiences of offspring searching for and contacting their donor siblings and donor”— research carried out using members of the DSR.
When I caught up with Kramer last year she’d just returned from a speaking engagement at the Birmingham Fertility Society (“Pregnancy is just the beginning!”) and was on her way to deliver lectures in Paris, San Francisco and Colorado.
The last two years had been a mixed bag, she told me. She’s been pushing for sperm banks, including those in Britain, to get on board with her project—still no luck there. Her petition to the Food and Drug Administration (FDA) in the United States to expand regulation of cryobanks, including mandatory electronic record keeping and banning anonymous gamete donation had been rejected outright. “Artificial insemination with cattle is more regulated than it is with human beings,” she sighed.
But there was a chink of light in the legal discussions slowly taking root regarding how a child’s right to identity as outlined in the UN Convention on the Rights of the Child might apply to donor offspring. Could it require domestic law to grant donor-conceived individuals of all ages a right to access identifying donor information? I asked her how doctors and gamete banks reacted to such points when she raised them: “They respond by saying, ‘You want to remove the right for parents to have babies!’”
“It’s ‘just give me the baby and we’ll figure everything else out later'”
Kramer hopes donor-conceived individuals will eventually force change—much as the grassroots campaigning of adopted people succeeded in banishing anonymous adoption record keeping in 1975 in the UK. Until then, much like donor-conceived individuals now, adoptees had no rights to access their ancestry files. Parents kept quiet. And it was commonly assumed, remarkably by psychologists and therapists too, that adoption had no psychological impact on adoptees themselves.
Today, we look back in disbelief. And when change comes to the fertility industry, Kramer insists, it “is not going to look good” either. “These adult donor-conceived children are saying, ‘You didn’t serve me. You served my mother—you got my mother pregnant—but you didn’t even consider my needs, my rights and my issues and how this would affect me for decades.’”
Kramer is perhaps an unlikely advocate for the rights of donor conceived individuals against their parents, given that she’s the mother of one of them. “My then husband was infertile but when the doctor told me, ‘You two will never have children,’ I remember thinking, ‘Come hell or high water, I’m going to have a child.’ I was in a desperate state of mind where I knew I was meant to be a mother and I would have done anything. And that’s where the reproductive medical industry has these people who are so desperate. They can get away without doing their due diligence about so many things. It’s ‘Just give me the baby and we’ll figure everything else out later.’”
Her fertility clinic advised Kramer to keep the origins of her son, Ryan, a secret from him. Kramer began to question this advice when Ryan was six. Her marriage had ended and Ryan became insistent about wanting to meet his biological father. “He wanted to know about this invisible side of himself,” she says, “and my first feeling was panic.” The only identifying information she had about her donor was his ID number—1058—and the name of the sperm bank: California Cryobank.
California Cryobank told her that confidentiality prevented them from giving her anything more than the anonymous self-description handwritten by the donor himself. There were a few clues, among them that her donor was white, six-foot-tall, studying engineering, sporty and in good health, and considered himself an optimist. In answer to the question “If we could pass a message on to the recipient of your semen, what would it be?” he’d written: “Educate the child. Raise him/her without biases of any kind. Teach him/her to trust in others but to rely on self. Instil in him/her a sense of humor and the ability to enjoy life.” Under: “Why do you want to be a donor?” he had written “For the money.” Kramer placed an ad in the classified section of the LA Times hoping that Donor 1058 would see it and get in touch. Nothing came of it.
Two years later she had her first breakthrough—persistent calls to the clinic had yielded new information: Ryan had several half siblings “out there.” Kramer set up a Yahoo group hoping to find other parents in her position, ideally some who had received sperm from Donor 1058. The Yahoo group grew exponentially and, by the time Ryan was 13, Kramer had turned it into the DSR: here were hundreds of parents and donor-children and even donors trying to track down their blood relatives.
Kramer drummed up media interest—including a segment with herself and Ryan on The Oprah Winfrey Show. The day after it aired, a woman emailed Wendy saying her two children had also been conceived by Donor 1058. “We have not told our daughters that they were donor-conceived and we do not plan to do so,” she wrote. Yet she had been given—and was willing to share—more information than Kramer had, including the donor’s date of birth and birthplace. This enabled Kramer to identify a man called Lance C Born on a Los Angeles County list of male births as Ryan’s probable biological father. Google did the rest.
It wasn’t easy for Kramer “to see my son shaking the hand of a complete stranger who was as related to him as I was. You want to believe the child is just yours. And I was so scared because I saw that my son’s heart was wide open.”
Ryan showed me the early emails between him and his father—you can see the shy blossoming of what has become a close relationship between biological father and son. Ryan now lives and works in San Francisco, moments from his father’s office. The two of them meet up every month. A few times a year Ryan, Wendy, Lance, Lance’s parents and as many of Lance’s other donor children that have found each other on the DSR get together. They’ve even holidayed together.
No turning back
Being a donor-conceived individual can mean never knowing who your biological relatives are. It can also mean the opposite, finding out and meeting new ones all the time, as you’re often a member of a rapidly expanding biological family. Since June last year, five more half-siblings Ryan didn’t know existed have materialised (he has 16 that he knows of). “One had a suspicion that she was adopted,” says Kramer. She’d asked her parents many times growing up—she just had this gut feeling. And now some of these families are imploding because the kids were lied to all their lives.”
It’s surprisingly easy to find people who want to speak about their ambivalent or negative feelings about having been donor-conceived. There is 17-year-old Talia Ougie, from London, an intelligent and thoughtful young woman, who told me that she feels angry for having been “denied a father,” that she feels her rights were signed away “when daddy’s sperm was purchased.” She has a twin sister who is fine with the situation, which has made Talia worry her feelings aren’t valid. “I don’t want to sound ungrateful,” she says. “For my mother, it was the right thing. People do say, ‘Be thankful you were born.’” But Talia is still so desperate to know who her biological father is that she intends to hire a private investigator once she turns 18. “If I don’t find him, I’m really scared of that,” she told me.
There’s 25-year-old Ross Evans, who found out he was donor-conceived by chance five years ago, having grown up believing that his mother’s ex-partner was his father. The truth came out for Ross, who now lives in Welwyn Garden City, when a daughter of his mother’s ex-partner got in touch out of the blue. His mother didn’t want them meeting up.
But they did, and the whole story tumbled out: his mother had conceived him via donor sperm in the last years of her relationship with her ex. Because it was an anonymous donation, “I only know he is five-foot-nine, has light skin and works in security and that I have 27 other half siblings in the world. There is nothing else I can do to find more information. You do see people on the street and think: ‘Is that my dad?’ I was very angry when I found out. It’s a hard feeling when you find out you’re not who you think you are.”
Many parents, says Kramer, including herself, decide on donor insemination ignorant of the issues at stake. And some of them are now unexpectedly faced with the prospect that their children could find out.
That’s exactly what happened in the one family. Becky is in her 30s, works in tech and plays trumpet in a band in her spare time. Until very recently, there had been no indication to Becky that she had grown up in anything other than a stereotypical nuclear family. “I was raised by my parents with two younger brothers,” she says. “There has always been friction between my father and me, but nothing that would raise any red flags.”
A passionate hobby genealogist, she’d traced both her parents’ lineage back hundreds of years, via interviews and cemetery visits. Both her parents had also undergone DNA tests on the website Ancestry.com. “I knew exactly where my family had come from and knew that we were 100 per cent Ashkenazi Jewish with very little room for error.”
Then two years ago, Becky decided to take her own DNA test. But “the results appeared wrong to me.” They revealed she was only 50 per cent Ashkenazi Jewish and that the other half was Irish/British. “I told my family and they all laughed and said that technology is fallible and that was the end of it. I assumed they were right.” Then, in August of last year, Ancestry.com flagged up the existence of a new relative: it was a half-sister, Mary, who Becky didn’t know existed. She still didn’t question her own parentage: “I immediately assumed my father had an affair.”
Becky messaged Mary on Facebook. When she got no response, “I worried that I had created a huge family crisis by coming out of the blue like that so I found her father on her Facebook and sent him a letter apologising for any distress I might have called.” Later that day, confronted with this information, Becky’s parents admitted to her that she had been donor conceived. “My father considers this the most shameful thing he could imagine, so he did his best to make sure the truth could never be revealed. He forced my mum to remain silent on the subject, which she has felt agonised about for my entire life.”
A few hours later, Mary’s father messaged her: “I’m your dad, Becky.” She eventually arranged the man she calls her “bio-dad,” bringing along a friend for moral support. She now sees her biological father about once a month and describes him as “an older version of myself.” Her parents won’t talk about what’s happened—they don’t know that Becky meets up with him: “They haven’t asked because they don’t want to know.” One of her brothers has since discovered he was also donor-conceived, the other has discovered that he was not.
“There is no turning back when you uncover something like this,” she says. “My half-sister and my biodad, they are more like me than anyone I have ever met in passing.”
Most, if not all, of these stories suggest exposing the truth is—in the end—in the best interest of people conceived by donor. That is just as well, with the end of anonymity looming. And, in the face of a foot-dragging industry, Kramer and the individuals she has connected will keep forcing the pace.
“Before the DSR came along we all believed everything we were told,” says Kramer. “‘This is the medical community so of course they’re honest and ethical.’ When people started finding their half siblings and parents and all these stories started to come out, we realised we had been told lie after lie after lie.”
She’s just published a children’s book to help young donor-conceived individuals on their journey. “All we do is present the facts. And the fact is that these aren’t just medical procedures, or problems that are solved when the baby is born. Donor-conceived individuals are growing up wanting to know who they are and why their rights have been taken away before they were even conceived. And if we can’t adequately give them an answer to those questions, more and more of them will start finding answers of their own.”