Controversy over Sperm-Donor Anonymity

Controversy over Sperm-Donor Anonymity

She always felt different from other kids. "I thought maybe I was adopted and my family was too ashamed to tell me," says Shelley Kreutz, a fine arts student at the University of British Columbia in Vancouver. For one thing, Shelley wondered why she was petite while her mother and grandmother had large frames. Shelley was also aware that she had to have a father, somewhere. But when she asked about him, her mother, Lois Kreutz, who raised her in Kamloops, B.C., would say only that she did have a dad and wasn't adopted. "Even seeing photographs of my mom pregnant didn't convince me," says Shelley, now 21 "There was no other explanation. I wasn't like everyone else."

When Shelley was 10, she found out why. After mother and daughter watched a TV documentary on donor insemination, or DI - a procedure in which sperm, in most cases from an unknown man, is artificially injected into a woman's cervix, uterus, fallopian tube or egg - Lois told Shelley that this was how she'd been conceived. Lois explained that she wanted a child but didn't have a partner, so in 1980 she underwent DI in a Vancouver doctor's office - the donor had delivered his semen in a small container only moments before. Instead of being shocked, Shelley was relieved. "Everything finally made sense," she recalls. "Family is so important to me. I felt like I finally fit in."

Shelley's joy was short-lived. When she asked who her father was, Lois said she didn't know: she'd signed a contract with the doctor granting the donor anonymity. She was given absolutely no medical or descriptive information about him either. It was a crushing blow for Shelley - in her late teenage years, it even contributed to a bout of depression. She was desperate to find out about her father, and when she was 13 she met with the doctor who'd done the insemination. It took several years of pleading, but Shelley did learn her father's eye colour, height, weight and blood type. She also discovered that he'd been a medical intern at Vancouver General Hospital. "The doctor told me it was lovely that I wanted to know my dad, but he wasn't going to help me," says Shelley. "He said he gave me life and that I should be happy with that. I just don't get it. Other kids have the right to know their biological parents. My mom may have signed away her rights, but I didn't."

Except for a few instances, the approximately 14,000 Canadians born by DI in the past two decades are locked into a system that protects donor anonymity. Until recently, physicians even encouraged parents not to tell their children how they were conceived (in fact, Lois went against her doctor's advice when she told Shelley). But for many children and families involved in DI, the system of deceit isn't working - and they're demanding changes. "There are parallels between DI and the sealed records of adoption," says Diane Allen, executive director of the Infertility Network, a national non-profit group that offers support to people who are unable to conceive. "Fifty years ago, it wasn't uncommon for a couple to go away on a holiday and return with an adopted child. The kids were never told, but they suspected. The same thing is happening with DI. It's not the adoption or DI that causes rifts in families, it's the secrecy, lies and things that aren't said."

Politicians have been listening - but only to a point. In December a federal committee convened by then-health minister Allan Rock to examine draft legislation on assisted human reproduction suggested moving toward an open-donor system. The committee recommended that when DI children reach 18, they be able to access personal donor information, including identity. But last week, when Health Minister Anne McLellan introduced The Act Respecting Assisted Human Reproduction in Parliament, there was no proposal for an open system. Those conceived with donated reproductive material would get access to detailed medical information, but donor identity would be handled in the same way provinces deal with birth parent information in adoption - donors would have to consent to being identified first. In keeping with the recommendations of Rock's committee, the bill would ban payment to surrogate mothers, sperm donors and egg donors. However, it would permit them to be compensated for expenses.

As the bill was unveiled last week, its proposal to allow stem-cell research under strict conditions drew the most attention - and stirred up a storm of controversy (page 24). But there was also some quieter flak about the DI provisions. The bill is a dramatic shift away from thinking of reproductive technologies as purely commercial endeavours. There are no statistics for Canada, but in the United States the infertility industry is worth at least $2 billion annually. In Canada, the health system usually shoulders the costs of infertility testing. But harvesting sperm and eggs remains in the private realm, and recipients must pay for DI (about $285 for one attempt) and so-called egg-donation programs (which can go as high as $15,000 per try, not including the cost of required hormones). Donors, meanwhile, are typically paid about $55 for a semen sample and as much as $3,000 for an egg.

The bill could undergo a lengthy process of review and debate. And the reproductive medicine industry will likely protest that donors will disappear if there's no monetary compensation. DI offspring, meanwhile, will be disappointed that donors can still remain anonymous. "Doctors have told me that it doesn't matter who the biological father is," says Torontonian Barry Stevens, 49, who made the award-winning film Offspring about being a DI child. "It's ironic because genetics, the science upon which they base their craft, is increasingly and sometimes arrogantly talking about the importance of genes in the making up of a human being."

Stevens and his older sister, Janice Botsford, were born in England. Their physician father was infertile, so their mother underwent DI at the facility of one of Britain's pioneering reproductive practitioners, Dr. Mary Barton. Under British law at the time, Stevens and Botsford would have been considered illegitimate if the truth about their conception had become known. Their birth certificates were falsified to indicate that the father who raised them was the biological father. They learned about their DI origins only in 1970, after immigrating to Canada, the same year their dad died. "I didn't know how to react," says Stevens. "My father was still my father. It didn't change that. But somehow it did change things. It left a big question mark."

Stevens recalls how he and his sister, conceived by the same donor, would joke that their genetic father was Prince Philip or actor Dirk Bogarde. But learning the truth about their conception gave them insight into the father who raised them. "I really wondered about him and how he felt about things," says Stevens. "I wondered why he didn't tell us. I don't think he ever felt totally secure."

Offspring traces Stevens' unsuccessful search for his biological father. He learned that hundreds of offspring were conceived in Barton's London clinic and are now spread among several countries. The sperm donors were some of the leading scientists and doctors of the day. At one dramatic point in Offspring, Stevens and Botsford are genetically tested to see if they are related to another of Barton's DI children, David Gollancz, a lawyer for the British government in London. They are. "It's mysterious to be with David," says Stevens of the close relationship the two have since formed. "Maybe it's because I know he's my half brother, and the knowledge gives me permission to trust him at a certain level. Or maybe there is some bond between us that I instinctively know. Certainly there is something about mirrors and seeing yourself in others."

Stevens is still looking for his biological dad. But one piece of the genetic mystery is solved - Barton assured Gollancz's parents that the sperm donor was Jewish, a surprise to Stevens and Botsford, who were raised Christian. "Scientifically, it's very interesting to see how this great soup of DNA works," says Stevens. "I have these markers on my Y chromosome that are associated with the Jewish population and half the people who share these markers come from around Minsk. "Yes," he concludes, "I'd like to meet my biological dad one day. Look at our culture and all the roots it has in parentage. The resolution of the story doesn't happen until Oliver Twist finds his biological parents. This theme goes right back to Oedipus, Moses and the legend of King Arthur and runs right through to our modern day with Star Wars and Luke Skywalker."

Gerald Rotering became a sperm donor in 1981. At the time, Rotering lived in Nelson, B.C., was married and had become stepdad to his wife's three children from a previous relationship. The couple had decided not to have kids together, and so when Rotering saw a newspaper advertisement that a local doctor was looking for a sperm donor, the then-29-year-old jumped at the chance. "I guess it served some emotional need in me to father children," says Rotering, a former mayor of Nelson. "It's the old instinct that I am contributing to the gene pool."

The doctor gave Rotering a physical and jotted down his personal history. However, no blood tests were performed, as they weren't required back then. Healthy, six feet tall, of average weight and with brown hair and brown eyes, Rotering was exactly what the doctor ordered. Every few weeks for the next year, he would receive a phone call asking him to come to the clinic at a certain time with some of his sperm in a small container. He would arrive at the back door (he wasn't allowed to deliver the semen through the front in case he ran into the woman's husband or partner in the waiting room). Rotering never saw the mothers or knew anything about them. And although on occasion he was given $60 for a vial, he felt uncomfortable taking the money. "That's a little creepy," says the 49-year-old Calgary real estate agent. "Can you imagine a child finding out they were conceived because someone wanted to make a few bucks? It's the same reason some people give blood. I did it because I wanted to help people."

Jim, who asked that his real name not be used, feels much the same way. The Ontario university professor began donating sperm in 1976, at the age of 40, after a divorce. He didn't take a cent for his contributions. "When there is money involved there is a tendency to be less than honest about your medical and personal history by making yourself look better," Jim says of the procedure. "I never thought of this as unethical," he adds. "If I had an infertility problem, this is what I would do."

Not only does Jim, like Rotering, contradict the stereotype of the sperm donor who does it for money, but neither is insistent on keeping his identity from his offspring. In fact, a few months ago Jim started scouring the Internet for ways to let potential children know he could be approached. He also informed the local infertility clinic that if potential offspring came forward, he would have himself genetically tested to see if he was their dad. No one has tried to contact him so far, but Jim is optimistic. Happily married to his second wife for more than 15 years, he has told his family he was a donor (he's waiting, however, until his youngest child is an adult before he tells him). "DI is something to be proud of, not something to be hidden," Jim contends. "Parents who choose to have a family this way have a lot of courage. If I was a child, I would be interested in knowing all the sacrifices and love that brought me into this world."

Much has changed about DI since Jim and Rotering were donors. Now, for example, instead of being used immediately, samples are supposed to be taken in a clinic and frozen for several months so that the donor's blood can be tested for disease. But one thing has remained more or less constant: society's propensity to shroud the process in secrecy. The first reported case of DI occurred at Philadelphia's Jefferson Medical College in 1884 and involved a Quaker woman whose older husband had been found to be sterile. A college physician inseminated the woman with a medical student's sperm, but lied and said it was her husband's. The husband was eventually informed of the deception, but at his request, the wife and child never were.

News of the DI didn't become public until 25 years later, when it was written about in a 1909 medical journal - and sparked public outcry. Moralists, lawyers and theologians said it was scandalous for a woman to be impregnated by a man other than her husband. For the next 50 years, DI was rarely discussed in the public realm, though it continued to be of great interest to intellectuals and scientists. One area of focus was eugenics, the science of improving the human race through controlled breeding - especially when Nazi doctors performed experiments involving DI and other reproductive technologies during the Second World War, with a view to building a superior German race.

In 1954, another head-on collision between public morals and medicine erupted when the British Medical Journal published a scientific account of DI. A British parliamentary committee recommended that the practice be made a criminal offence (it never was). Pope Pius XII declared DI to be a sin. And for a number of years after, several states and provinces in North America considered DI offspring to be illegitimate. "Historically, DI has been organized around protecting the infertile male from shame," says Rona Achilles, a Toronto sociologist and expert on reproductive technology issues. "We link male fertility to virility, sexuality and potency in a way we don't with female fertility. This mindset has held the entire social debate back."

Legislative reform is, therefore, long overdue. It is estimated that one in every 100 babies born in the industrialized world is conceived through some kind of assisted-reproduction technique. Yet Canada lags behind most Western countries in implementing related laws, including ones addressing the new frontiers of cloning and stem cell research. More than a decade ago, the federal government set up a Royal Commission to study the field. Reporting in 1993, it found that more than 250,000 couples in the country experienced infertility, and that the reproductive industry was booming. The commission's legislative recommendations languished for three years, until then-health minister David Dingwall introduced a bill to Parliament, but it died when the 1997 election was called.

The few laws in place for DI centre on the testing of sperm for infectious diseases like HIV/AIDS and hepatitis. And there are loopholes in enforcement. In 1999, Health Canada found that several Canadian clinics weren't following regulations for testing donors' blood. Collected semen was ordered quarantined, causing a severe shortage in Canada. To this day most clinics are still importing semen from the U.S.

Despite the shortage, Canadian social health professionals have argued that there should be limits on the number of times donor sperm can be used, as there is a risk that related offspring could meet and produce children of their own. Under the new legislation, limits would be imposed. It's common for donors to give semen on a monthly, or even weekly, basis, and for several years. A DI person could be unaware that he or she has as many as hundreds of half-siblings, perhaps all of them living in the same area. "When you look at simple things like how many babies have been born to one donor, it's impossible to get an accurate picture," says Laura Shanner, an ethics professor specializing in reproduction and genetics at the University of Alberta. "No one has a clue what is actually going on in practice. Reproductive medicine has been all about the patient. We are bringing new children into the world but they are the ones who tend to get lost as grownups do what works best for them."

Peter, 44, and Irene, 42, who asked that their last name not be used, have spent their lives together. Their families' homes were near each other in Edmonton. They went camping together as kids. And when they were in their 20s, they fell in love and were married. But their dreams of building a family didn't unfold as quickly as they hoped. After two years of being unable to conceive, the couple headed to a fertility clinic. Following numerous blood tests, medical examinations and surgery, they were diagnosed with unexplained infertility.

For the next five years, Irene tried to become pregnant by being inseminated with her husband's sperm. The couple also tried in vitro fertilization, a technique in which the egg or ovum is fertilized by sperm outside the body and the resulting embryo is implanted in the uterus for gestation. Nothing was successful. "It was the lowest point in our lives," says Irene. "There was so much at stake. When we didn't conceive, we were devastated." There were only three options left for the couple: sperm or egg donation. And if those failed, adoption. "Our feeling was that if we couldn't have a biological child together," explains Peter, "at least one of us should have a genetic link to a child."

They opted to try DI first, and Irene got pregnant on the first attempt. Today, nearly a decade later, the couple have three children, all conceived using sperm from the same donor. "I view DI as a gift," says Peter. "I don't feel that loss of not being able to genetically pass something on. Quite the opposite. I am overjoyed. It helped us build our family."

But while they are grateful, Irene and Peter also have concerns about Canada's closed-donor system. Simply, they have no access to the donor's medical files. They have been given some of his basic characteristics, such as height and weight, and the doctor assured them that the donor was healthy. But that was at the time of the insemination, and most likely there hasn't been any follow-up. Some age-related illnesses, like certain cancers and Alzheimer's, have been linked to genetics. Yet in most cases when family medical history is taken, the doctor trusts what the donor admits to. "It's very irresponsible," says Irene. "My children might not get tested for something that they are at risk for. By the time they find out, it could be too late."

Irene and Peter's children have all been told about their conception. They've been given books on the subject and are encouraged to ask questions. The children don't seem to act or feel differently than other kids. The eldest refers to the donor simply as a friend. And what does that mean? Someone, says the child, whom he might never meet, like a man who helps a stranger out of a burning building. But he is still a friend. "To all of us," says Peter, "the donor is not their parent, but the person who helped bring them into this world. He has a very important link to this family."

Jim would concur. In fact, the Ontario sperm donor has a letter ready to give his offspring. In it he details his family and medical history, his own life story and his motives for being a sperm donor. "If I ever meet these children, I'd tell them how much raising my own children has made my life rich and complete," he says. "If they were really open," he adds, "I'd even let them in on my favourite book, Dr. Seuss' Happy Birthday to You. "If we didn't have birthdays," Jim recites, "you wouldn't be. If you weren't born, well then what would you do? ... You might be a fish! Or a toad in a tree! ... Or worse than all that, Why you might be a WASN'T ... But you ... You ARE YOU! And now, isn't that pleasant!"

Despite the emotional turmoil linked to her mystery father, Shelley Kreutz had a full and happy childhood. She played basketball, soccer, volleyball and other sports. She acted in school plays and joined the Brownies. Lois and Shelley both have an open, easygoing nature, which made their comfortable Kamloops home a popular hangout for neighbourhood kids. It was the place to be for Halloween, Christmas and weekend slumber parties. And while family and friends in the city of 80,000 eventually learned about Shelley's conception, it didn't change a thing.

Today, Shelley hopes to become a theatre arts professor. Although she doubts she will ever know her father's identity, she says she'll also continue fighting for an open-donor system. "I know a couple of girls who were born by DI who don't want to know their origins," says Shelley. "I've heard other DI kids say that not knowing is like starting a book with the first chapter missing. Either way," she concludes, "all DI children have the right to information, whether they choose to exercise it or not."

See also NEW REPRODUCTIVE TECHNOLOGIES, ROYAL COMMISSION ON; ADOPTION.

Maclean's May 20, 2002