November 22, 2009
Megan Ogilvie
HEALTH REPORTER
The two young men have the same broad, sloping foreheads, straight brows and receding hairlines.
They both like baseball – they're Blue Jays fans despite the winning drought – are outspoken and articulate, and have a similar barking laugh.
Four months after finding each other, Rob Hunter and Kevin Martin also want to know if they share something else: the same biological father.
Hunter, 24, and Martin, 23, were conceived with donated sperm. In the mid-1980s, their mothers sought help from the same small fertility clinic at the Health Sciences Centre in London, Ont. After their husbands were deemed infertile, the two women chose to be impregnated with a stranger's sperm. Neither one wanted – or was encouraged – to meet the donor.
Now, almost a quarter of a century later, Hunter and Martin want to know the identity of the man whose DNA helped form every cell in their bodies.
But in Canada, where egg and sperm donors have the right to remain anonymous, Hunter, Martin and other donor-conceived children face a long, often futile, search to find their genetic origins. And they are fed up with playing detective.
"There's this whole half of me that is completely missing," says Hunter, who has been looking for his biological father for two years. "To be asked why you want to look is like asking why you have to breathe. It's an essential component of human nature to want to know more about yourself and how you got to be here."
The first big wave of donor-conceived children, born during the fertility industry boom of the 1980s, is now coming of age. Vocal, motivated and often furious, these young men and women are banding together to tell the fertility community that anonymous donation is wrong.
They say it is their intrinsic right to know their genetic background, that they are being denied critical information about their medical history, that they are worried they might unknowingly have sex with a half-sibling. And they possess a deep desire to learn their full family heritage.
In recent years, they have received support from ethicists, psychiatrists and social workers who have seen first-hand how donor-conceived children struggle to form an identity. They point to adoption, which has become largely a child-centred practice, and ask why infertile couples and the fertility industry have yet to place children first.
Research, too, is showing the majority of donor-conceived children who meet their donor and half-siblings report that the new relationships have a positive impact on their life.
Other countries, including Sweden, Austria and the United Kingdom, as well as a number of Australian states, have decided a child's right to know their genetic background supercedes the parents' and donor's right to privacy.
Donor-conceived children say it is time Canada did as well.
"I don't think anyone could say, if they found out their dad was not their real dad, that they wouldn't want to know who has the other half of their DNA," says Martin, a fourth-year international relations student at the University of Windsor.
"That I don't know who he is just keeps coming up over and over again. It's
something that eats at you every day."
HUNTER AND MARTIN are meeting for the first time at a Kitchener train station on a drizzly morning in late autumn. Until now, they have only corresponded by email and sent each other the occasional text message.
They had planned to meet at a coffee shop in the same Waterloo plaza where Hunter owns an ice cream franchise. But Martin's train from Windsor was delayed, and Hunter had an afternoon meeting in Toronto, so they end up first shaking hands in the entranceway of the Kitchener VIA station.
After a few minutes of small talk, the two sit next to each other on a long wooden bench in the station's waiting area. Like a blind date, the meeting is full of shy smiles, stilted conversation and sideways glances. Both men admit they had trouble sleeping the night before.
"I tell you," says Hunter, turning to look at Martin. "I used to have long hair, I used to have very long hair and it was exactly like that."
Martin glances at his shoulder-length mane, then softly chuckles.
Hunter was 22 when he found out how he was conceived. His grandmother, after drinking one too many toddies, let it slip during an evening visit with her grandson.
"She looked me right in the eye and said, `You know your dad is not your real dad,'" says Hunter, who confronted his mother the next day. "It was heartbreaking to find out that she had kept that from me for so long."
Five months later, when Hunter became curious about his biological father, he called the London fertility clinic. It took six months of badgering doctors and social workers before Hunter was told his donor's number – 188 – and another year before he learned that his donor had brown hair, brown eyes and was born between 1959 and 1964.
It was not enough.
"There's so much curiosity," says Hunter. "I want to see how we're alike, how we're different. Is he in business? Is he not? Does he run marathons? All the stuff that is unique to me, you wonder how much of it comes from my mom or comes from the environment or comes from the donor."
In June, Hunter was featured in The London Free Press in an article about sperm donation. Martin's mother saw it and passed it on to her son, who then contacted Hunter to find out how he had learned the few details about his donor. He also had to find out whether Hunter could be his half-sibling.
"The resemblance was striking," Martin recalls. "I've never met anyone who more closely resembles me in my life. It's quite scary."
Martin has known since he was 12 that his mother used donor sperm to conceive. "I remember sitting on my couch, and she told me that I was born thanks to a group of people who wanted to help mothers have babies."
It was only when he turned 20 that Martin says an overwhelming curiosity compelled him to search for his sperm donor. He also began to wonder how he could spend the rest of his life missing half of his identity.
"It's impossible to comprehend what it's like not to know," he says. "I began
to think of myself as being oppressed as a citizen as opposed to someone who
just doesn't know who their father is."
DONOR-CONCEIVED children have always been the missing voices in the debate over how we handle infertility, says Juliet Guichon, a professor of bioethics at the University of Calgary.
Because infertility is considered a medical problem rather than a family problem, doctors focus on treating infertile couples by any means possible. Often, she says, the solution is to give a woman a dose of sperm or eggs as if it were a dose of medicine.
"They think they are doing a good thing," says Guichon. "And if they are only hearing from the adults, then it is understandable they would carry on with what they are doing because it works. But they do not hear from the offspring."
When people do listen to donor-conceived children, notes Guichon, it is clear many are uneasy about how they were conceived, and the vast majority are desperate to know their genetic heritage.
Guichon, who is editing a book called Who am I: Best interests and rights of children of assisted human reproduction, says psychiatrists report that some donor-conceived children suffer from psychic pain over not knowing the identity of one or both biological parents.
At the very least, she says, donor-conceived children say they have a hard time forming an identity when they do not know their genetic, cultural and historical roots.
"What if you don't know who your kin are, at least on one side of the family," says Guichon. "What if you look in a mirror and see red hair ... and you don't know anybody with red hair. So you see a stranger and you want to meet that stranger. But that's denied to you because the adults organized something (without you).
"Why aren't they thinking of the needs of the child who they are deliberately creating?"
Wendy Kramer of Boulder, Colo., has heard from thousands of donor-conceived children. In 2000, she and her then 10-year-old son, who was conceived with donated sperm, started an online registry to help connect consenting sperm and egg donors with their offspring, and to match half-siblings.
Nine years later, the Donor Sibling Registry has more than 25,000 members worldwide and has matched close to 7,000 people.
"The younger kids are thrilled to be finding their half-brothers and half-sisters," says Kramer. "It's redefining family."
Despite the mounting anecdotal evidence that donor-conceived children want to know the identity of their sperm or egg donors, little has been done to change current practices in the fertility industry or the laws governing donor rights in the U.S. and Canada, says Kramer, who has recently partnered with academics to produce some of the first research on the issue.
One of their recent studies, published in October in the journal Reproductive BioMedicine Online, found a large majority of donor-conceived children reported having a positive experience when forming relationships with newly found half-siblings or donors.
The study, which also looked at what motivated donor-conceived children to search for donors or half-siblings, found kids between the ages of 13 and 18 were curious about potential similarities with donors or half-siblings, while adults stated medical reasons or the need to gain a better sense of identity or family history.
Kramer says donors and would-be parents need to be better educated about both the short- and long-term ethical considerations of third-party assisted reproduction – and that means thinking about the children. In her experience, many parents – especially those who received donor eggs – are reluctant to tell their kids the full story of their conception.
"In the egg donation arena, disclosure is almost unheard of," she says. "Most mothers don't want to tell their children. I've heard things like, `I carried this child, I gave birth to this child, it is my child.' Well, it is and it is not. If the egg donor has a family history of breast cancer, it's not fair the child doesn't know."
Samantha Yee, a social worker at Mount Sinai Hospital's Centre for Fertility and Reproductive Health, agrees that a lack of education is perpetuating the anonymity of egg and sperm donation. Parents largely still believe secrecy is the best way to protect their family.
"I have no doubt in my mind that almost all parents – 99.5 per cent – have the best interest of the child in their mind," Yee says, noting that in her experience about 60 couples out of 100 do not want to tell children the truth about their conception. "They believe there is a strong stigma about infertility and that society doesn't understand about donation. They think it may be easier not to say anything because the child will be stigmatized.
"And they are so fearful of being rejected by the child because they are not the genetic parent."
Fear is the main obstacle preventing more parents from asking for open sperm and egg donations, says Sherry Levitan, a Toronto lawyer specializing in third-party reproductive law.
Many parents, she says, are scared a donor will one day challenge them for custody of the child, while donors worry they could be forced to pay child support. In fact, she adds, neither scenario has happened in Canada. In the U.S., where things are generally far more litigious, sperm donors have fought for custody of their offspring and against paying child support, Levitan says.
To alleviate these fears, she suggests the Ontario government enact legislation that would terminate a donor's parental rights.
Hunter, Martin and other donor-conceived children say searching for a biological parent does not mean they want to replace the parents that raised them.
"I don't necessarily want love or affection," says Hunter. "I don't want money. It's more about curiosity ... I'd love a relationship, but even just to know certain details would be okay."
The deep urge to seek and learn about genetic parents has already been seen with children who were adopted, which is why Ontario and other provinces have opened adoption records. It's also why more than a dozen countries have done the same for those conceived with donor sperm and eggs. Sweden, the first country to acknowledge a shift in attitude about genetic heritage, banned anonymity in 1985.
Critics say abolishing anonymity would reduce the number of donors, which would in turn encourage people to travel to countries with more lenient fertility laws. Indeed, countries that have eliminated anonymous donation initially did see a drop in donors.
In the U.K., for example, the number of egg donors dropped from 1,029 in 2004 to 923 in 2005, when anonymous sperm and egg donations were banned. By 2008, the number of egg donations had risen to 1,084.
But proponents counter those who do donate will be doing it for the right reasons.
In Canada, the voices of donor-conceived children are getting louder. Olivia Pratton, a B.C. native conceived with donor sperm, has launched a lawsuit in B.C. Supreme Court to allow, among other things, people over the age of 19 to learn the identity of their donor and be able to make contact with them.
Guichon, the Calgary ethicist, says Canada must at least ban donor anonymity and create a registry so that donor-conceived children can access their genetic history. She also suggests there needs to be a social revolution when it comes to treating infertility. Put the needs of the child first, she says.
"This is not a commercial deal. This is not a medical deal. It is the formation of a family. People who do this need to understand they are creating a child with three people, and all three should be willing, from the beginning, to be in contact with the child and with each other. And if they can't agree to do that, then they shouldn't do it."
In the meantime, Hunter and Martin continue to play detective. Martin is waiting for the London fertility clinic to tell him his donor number, something he was promised months ago. The two men have also sent their DNA to a company, Family Tree DNA, to see whether their genetic material matches up. So far, the results aren't promising: two of four sets of findings have come back negative.
But Hunter and Martin remain optimistic. They know most sperm donors at the clinic were medical students at the University of Western Ontario, and each has searched the yearbooks of the graduating classes of 1985, '86 and '87.
There is one man with the same broad, sloping forehead and straight brows, who they think could be their sperm donor – their biological father.
"I have the same look to me when I'm smiling," says Martin, pointing to the small black-and-white photo. "My mom saw it and compared it to a picture of me smiling. It gave me goose bumps."