"For the rest of your lives, get a DNA test with whoever you're coupling with. That person could be your sister or brother."

A Barwin family speaks out

Sperm mix-ups have far-reaching implications. Anonymity makes them worse.

Last week, my documentary, How We Move Forward, aired on CBC radio's The Current. It is about a couple who went to Ottawa fertility doctor Norman Barwin for help with a fertility issue and subsequently had two children. It was only after hearing about Kat Palmer and Rebecca Dixon, two women who discovered they were biological offspring of Barwin himself, that this family decided to pursue genetic testing. They learned that they too were victims, and that like the majority of the others suing Barwin in a class action, they had received the wrong sperm — and no one could tell them whose it was.  

You can listen to the documentary here.

You can read the text story that accompanied it here.

There were many issues that this family could have chosen to highlight. It was notable to me that they focused on the harms of anonymity. Donor anonymity — keeping secret the identity of a donor, both from the families who use their sperm or eggs and from the people who are created from them — has been the norm for most of the history of donor conception.

Donor-conceived people were among the first to challenge the wisdom of anonymity. A low rumble started more than two decades ago. (I recognize that not all DC people are against it, but many are.) Many other people — parents, ethicists, counsellors, lawyers and academics among them — joined them in opposing anonymity. But many jurisdictions, like Ontario, still allow donors to be anonymous, even though the province abolished anonymity in an analogous practice — adoption — years ago.

It feels as though something is shifting now. As a journalist, I have more difficulty finding people who will defend anonymity. At a conference put on by the University of Toronto faculty of law last November, for instance, I was asked to moderate a panel discussion entitled "Donor Rights versus Offspring Rights." Where anonymity was concerned, there was little disagreement among the donors, offspring, lawyers and academics on the panel: they all felt it should end. 

Similarly, while seeking input for my documentary from the community of fertility doctors in this country — in particular, comment that would stand behind the practice — one physician emailed me: "Honestly, I don't know any doctors who support anonymity." The doctor who did speak in the documentary could compassionately explain why anonymity persists, but he was not necessarily recommending it. 

Below, I share with you words — some featured in the documentary, some straight from the interviews — spoken by a lawyer, father, mother, donor and doctor on the topic of anonymity.  

In their words 

Lawyer

"We've had a number of people come to us and [say], 'Well, let's go back to the registry. Let's go back to the registry and see which donor may be my biological father.' We've had to say, 'I'm sorry, there isn't one.' We've had people say, 'Let's go back to the doctor's records.' But doctors are only required to keep records for ten years. We only have records going back ten years, and beyond that, we have none. Really, there's very little information available to people who've come to us."

Father 

"It's incredible that today a child can be produced and he has no right to see who he comes from or what his medical history is or even who his siblings are. That's amazing in this year, this day and age. I didn't realize that we're that vulnerable.

"The other question that I have is: what happened to my sperm? I don't know where it went. And Dr Barwin is not answering any questions. So I kind of wonder, am I going to get a surprise five years from now, when somebody on Ancestry or 23andme gives me a phone call? I have to see it as a possibility.

"It's like I told my children... for the rest of your lives, you're going to have to get a DNA test with whoever you're planning on coupling with. Because that person could be your sister or your brother. You've got siblings across Canada."

Mother

"Nobody seems to care about the children who are being produced this way. Everything I see is about the rights of the donors and the rights of the recipients and no discussion of the rights of the children — who grow up to be adults just like you and me — the children who are affected by this. 

"As far as I'm concerned, a gamete donor, whether an egg donor or a sperm donor, is an adult who makes a decision to donate. They had a choice — they chose to donate. The children aren’t given a choice. What we need to do is open that choice to them — allow them to find out who their donor was, a  name, a photo. Doesn't mean they have a right to a relationship, but they have a right to health records, ancestry records, to data, and to an identity.

"I hear people say well we can't get rid of anonymity because then people won't donate. Well if the only way we can get people to donate is to lie to them — to tell them that we can protect their anonymity or to tell them that the children conceived by their donation won't mind that they're anonymous — if that's the only way we can get them to donate, then maybe we shouldn't have an egg or sperm donor program at all."

Donor

"What I think the offspring have absolutely every right to is a name and information, background, heritage, medical information, the ability to contact that donor if they have questions. I think absolutely they should have that right.

"I know now that in a number of instances parents of children sent correspondence through [the sperm bank] that they'd asked that they deliver to me. And they never did. In one instance, I read a letter that was a copy of a fourteen-year-old letter and it was thanking me... It was heartwarming to read that correspondence but it was also...what must they think of me, that I didn't respond?

"[Anonymity] keeps information away from the donors. Maybe at some point I would have had an idea of numbers if they had been allowing contact to happen.  

"I don't know for sure how many offspring I have. I'm fairly certain that at a minimum it's in the high 20s, maybe even low 30s. And likely more. That's too many, by far too many. For the sake of these children, it's not right. That was not my intention when I decided to become a donor.

"You think of ten or fifteen children spread across the country -- it's not that big a number. But if the number's in excess of thirty and a lot higher than that, that's not safe. There's too much risk out there for these offspring, who don't have complete information. They're going to run into one another."

Doctor

"I'd like to see children from third party reproduction have full access to all their biological heritage and opportunities, if it was important to them, to meet their biological parents.

"At the same time, I see potential donors who are working in a community space that doesn't support what they're doing. With sperm donors, people make jokes about it to essentially express their discomfort... If and when donors find the process too complicated, they simply won't donate.

"[I]ntended parents... are uncomfortable because they, we, none of us, can predict what the future is going to bring. And their biggest fear is that at some level their child will be taken away from them. And if that doesn't sound fully rational... I can tell you it feels very real to the couples involved. They're  working from a position of deep anxiety, deep despair, deep worries about what the future can bring for them. They're absolutely terrified of any variables that could possibly break down their chances of building a family. Anonymity is seen as a way of protecting that opportunity.

"Clinics who are adhering to best practices are doing our level best to remind intended parents that anonymity is not actually a desirable endpoint. That revealing the biological source of eggs and sperm to their child, to their greater community, is a desirable outcome. It's a worthy goal and arguable a necessary goal.

"Third party reproduction is the hardest part of the field that I work in. It's the part that has the most ethical dilemmas and one solution inevitably creates another problem. I can't tell you what I think the best option is here, for even as I recognize the rights of children to fully find out their biological heritage, I know too that I'm compromising future parents' opportunity to be able to have a child."

*

If you have something to share about any topic related to reproductive technology, please get in touch: alison.motluk@gmail.com or 416-465-0497.

Follow @HeyReprotech on Twitter.

Please invite your friends to sign up for the HeyReprotech newsletter.