Do patients have the right to an anonymous donor?

Given that the Progress Educational Trust (PET) has just completed a project on gamete donation I was more than intrigued about this debate, which took place at the European Society for Human Reproduction and Embryology's annual meeting in London. Despite the slightly odd framing of the question I was looking forward to a really good discussion and getting a wider perspective on gamete donation. One speaker was from Denmark, where donor anonymity is still the norm, and the other from Sweden, where identity release donation was introduced in 1985. Associate Professor Lone Schmidt, arguing for the motion that parents do have the right to an anonymous donor, started by quoting a seven-year-old donor-conceived child: 'I don't care how you made me just as long as you made me'. Schmidt, from the University of Copenhagen, said that longitudinal cohort studies have shown that gamete donor families, including those who have used anonymous donation, have functioned well. It is generally accepted that non-disclosure by the parents about donor conception and the child subsequently discovering by accident that they are donor-conceived can be damaging. So, she continued, using the treatment method that suits the parents best will increase the probability that the parents tell the child how it came into the world. Open identity donation was introduced in Sweden in 1985 but research has shown that only 11 percent of children had been informed that they were donor-conceived. Schmidt postulated that mandatory open identity leads to a disclosure paradox where parents are more reluctant to be open with their children about their conception. Finally she argued that there is no reason to believe knowledge of genetic origin is a fundamental prerequisite for psychological well-being, identity and social relations. Dr Claes Gottlieb, a physician from the Sophiahemmet IVF unit in Stockholm, argued against the motion. He started by saying that although his opponent had been rather balanced in her arguments, he was not going to be so measured. He argued that the title of the debate was wrong and that it should be 'Do children conceived through gamete donation not have the right to an identifiable donor?' He argued that it was the child's interests and rights that should come first and that children have the right to know their genetic origins. He pre-empted a counter argument that children who are conceived naturally don't always know their genetic parentage by saying the 'State can't go in to the bedroom', but where outside help is needed to conceive a child the State has a role. In countries where there is still donor anonymity the demand for identity release donors is increasing, he said. As evidence he referred to one clinic in the USA where 80 percent of patients chose an open donor. Why is identifying information important? Because of the desire to know one's roots, curiosity, for medical problems such as needing a bone marrow transplant and the need to understand the donor's motives. In a Swedish study of parents of donor conceived parents of children aged one to four years, 78 percent of parents planned to tell and 16 percent had started to tell. 'If you were a donor conceived child', he asked, 'wouldn't you want identifying information?' Read more... Article: by Sarah Norcross appeared in Bionews 715 29th July 2013

Anonymous donor conceived want the right to know their biological parents

It is undeniable that we humans have an innate desire to know from whom we came. Many people who are adopted or have only one parent will tell you that they feel they are missing a piece of a puzzle. Genealogy websites like Ancestry.com exist because of our fascination with our genetic ancestors. Every time I see an ad for Ancestry.com, a place where you “Find your ancestors’ stories” and “Discover yours,” I feel that tug to find out more about my grandparents and great-grandparents. My daughter’s junior year project for high school was a presentation and paper on the immigration of both sides of her family to America. Now imagine if you were purposely denied one half of your story by a powerful industry that runs on anonymity. And what if when you pointed out the intentional injustice, you were told that you should shut-up and simply be grateful for your life. This is the experience for many a child conceived from anonymous donor gametes. The following is a excerpt from testimony that Alana S. Newman, founder of AnonymousUs.org, gave to the California Assembly Committee on Health regarding AB460, a bill in the California legislature that would require insurers to offer coverage for infertility treatments regardless of the relationship. Alana is bravely standing up for the rights of those intentionally denied what she believes is a fundamental right: the right to a relationship with one’s biological parents. She writes: The facts of my conception are that my father was paid to abandon me. There is no dignity in that. I suffered from debilitating identity issues, mistrust of the opposite sex, hatred and condemnation of the opposite sex, feelings of objectification – like I only exist as a play – toy for others, and feeling like a science experiment. If people can take away something so precious as a mother or father and make us feel like we should be grateful for the loss, what else can people take away from us? How do you expect the next generation to fight for things like freedom, democracy, clean air, clean water, when something as precious and basic as your mother or father is stolen from you? Removed by the state… Removed by a fertility industry that forces you into existence and then doesn’t return your calls when you grow up and start banging on their doors asking for records… Removed by a commissioning parent, often your other biological parent who vowed to protect and provide for you, but only on the contingency that you show gratitude for your life and don’t ask questions about the other missing parent…. One of the United State’s most famous civil rights leaders was Malcolm X. The “X” he used to replace his last name was a direct criticism of slave – owners removing slaves from their spouses, parents and children, and being disconnected from their ancestry and heritage. “Who do you think you are” is a popular TV show where celebrities have their genealogy investigated. Rosie O’Donnell herself expressed a craving to “discover her family as fully fleshed out people and learn about their journeys”. The sheer existence of a term and concept like genealogy demonstrates that it is unfair to minimize and marginalize donor – conceived people’s curiosities about our genetic kin, and dismiss our desire for connection….. Having a bloated industry where medical and legal professionals profit from separating children from their biological parents is problematic. Very few people like to hear that their choices have devastating consequences for others. If there is a place where voices like Alana’s need to be heard, it is the fertility machine. Both infertile couples and the fertility industry must hear what she is saying. The desire for a child does not trump the right of a child to know his or her biological parents. Article: 14th June 2013 www.lifenews.com

Sperm Donor anonymity debate in US - Should the law change?

When couples struggle with fertility, many of them turn to sperm donors to help them get pregnant.
This process has worked well for many families, but one woman, who used a sperm donor to have a child, says she thinks there should be changes made in the industry.

Wendy Kramer says her son always wanted to meet his biological dad, so she co-founded the Donor Sibling Registry, a website that allows donors and donor-conceived children to voluntarily connect. She says there are now 33,000 users and the website has made more than 9,000 connections.

Families input the name of their sperm bank and their donor number, and see if there are any links with donors or half siblings.

Kramer says it’s very rewarding, but she’s noticed a few things on her website that she finds alarming, like the number of children seemingly fathered by one sperm donor. “We do know there are groups of 50, 70, 100 all the way up to 150 children for one sperm donor,” Kramer says.

She believes that increases the risk of passing on genetic disorders, and poses the risk that a random meeting of half siblings could turn into accidental incest.

“We hear about random and chance meetings all the time on the donor sibling registry,” Kramer said. Kramer believes the sperm bank industry needs to make some big changes. “Donor anonymity is an archaic practice, and it’s something that should be banned,” she says.

She’d like for the donors’ medical histories to be updated over time, and she wants to see some sort of data base that would show if men were donating at multiple sperm banks. But sperm bank directors say this is a complicated issue. “We cannot control the patient,” said Betsy Cairo with Cryogam, the state’s only commercial sperm bank.

She says her bank does limit the number of pregnancies to eight in the region and 25 in the country, but try as they might, they have a hard time getting information once the sperm goes out to other clinics. Cairo says every shipment includes a form asking the patient or the doctor to let the sperm bank know if a pregnancy results, but less than half of people even respond.

“If a patient chooses not to disclose, that is her choice, so are you going to regulate the patient?” she asked. It is a complicated issue. Other countries, including the UK, have done away with anonymity, allowing children born using sperm or egg donation to get information about their genetic parents when they reach age 18. The donors have no financial responsibility, but some people argue that banning donor anonymity would mean fewer people would donate.

Article: Fox 31 Denver 8th November 2011

Donor mum: The children I've never met

Documentary about about egg donors and sperm donors making contact with their genetic children. 'Donor Mum' can be seen tomorrow: BBC1 10.35pm Tuesday 30th August.
In 1991, Sylvia was one of Britain's first anonymous egg donors. After donating as a one-off at the London Fertility Centre in Harley Street, all she asked to know was whether her donation had been successful. But she soon found out more than she had bargained for.

Sylvia was struck to discover an article in the Daily Mail six weeks after she donated, telling the story of a woman called Joan who had successfully become pregnant using en egg donor. The clinic, the dates and the fact that they were twins, coincided exactly with Sylvia's story. She felt sure that Joan was her recipient.

Joan had a tragic story - her two boys were killed in a car crash when they were on holiday in Crete, and in her mid- 40's she desperately wanted to start another family. When she successfully used an egg donor, there were countless press reports that covered her moving story of tragedy transformed into happiness, and even a BBC documentary in 1994 that showed the twins as toddlers.

Sylvia felt tormented by seeing children who were genetically hers, but were in fact strangers who she wasn't supposed to know. She was tempted to make contact, but terrified of upsetting a family who had already suffered so much. But once the twins turned 18 she felt it was right to take the bold step of contacting them.

Alongside Sylvia's story is the story of her son Eliott. Sylvia wanted a child when she reached 33 but hadn't found Mr Right, so she decided to go it alone. Eliott was conceived with the help of an anonymous sperm donor, and was born six months before Sylvia donated her eggs. Now 19, Eliott is ready to search for his sperm donor father.

For Eliott, born in 1991 when all donors were anonymous, his only hope is to search through DNA testing with the help of an organisation called UK Donorlink.

For Sylvia, contact with her recipient is at her fingertips. The film follows her turmoil as she decides how and when to make contact with Joan and the twins - and the extraordinary consequence of her decision.

Donors is a warm and moving film about a new kind of family emerging from the interventions of science. This film is also a snapshot of a future following the removal of donor anonymity in 2005, where more and more people will discover who their donors are after they turn 18.