'Donor baby' warns of pitfalls in push for changes to assisted conception
A woman who was conceived using donor sperm is warning against moves by fertility clinics to use money to try to attract more egg and sperm donors.
Emma*, 32, says that she fears the legislation which controls the practice of assisted conception - 2004's Human Assisted Reproductive Technology (or Hart) Act - is being tested to suit the increasingly commercial focus of New Zealand's fertility industry.
"This commercialisation makes me feel dirty. I don't think that the drive should be about turning a dollar, and as much as the clinics here will say that's not the case, I just don't believe for a second that that's true," Emma said.
"They are funded at least in part by the pharmaceutical industry, and I just find that repulsive.
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"The idea that babies are being treated as a commodity needs to be challenged, and money should stay well out of the equation when we're talking about creating human life."
Emma has spoken out about the issue as fertility experts, and would-be parents who are struggling to conceive, grapple with a shortage of egg and sperm donors. She has also told of her own difficulties in trying to track down the man who made her life possible, and of how that search was ultimately thwarted.
Among those arguing that a more liberal approach to sourcing sperm and egg donations is Dr Andrew Murray, the medical director at Fertility Associates. That business has increased the amount of money it pays to donors but has been careful to keep it relatively modest and treat it as a "reimbursement" rather than compensation, to stay inside the law which bars payments being made in return for donations.
Murray said about 400 women were on waiting lists for sperm donors across Fertility Associates' four clinics, and another 160 were waiting for egg donors. Wait times could be up to two years in some cases.
"If we can source sperm from a country overseas where they don't pay their donors and we can fulfil our obligations around identifiability, that would be great for our patients because it would immediately increase the numbers of donors available," Murray said.
However, an academic who has researched the area extensively, Ken Daniels, has also cautioned against introducing payments for donations.
And Emma was concerned about where such changes could lead based on her personal experiences.
WHERE ARE THE ETHICS?
"The guidelines in the original Hart Act were really established to protect the rights and best interests of the children that would be created through these practices," she said.
"What I'm seeing is the pressure from the industry to make changes to the legislation and guidelines that actually aren't in the best interests of children, but would allow the regulations to be altered in a way that benefits the industry and their continuing ability to make a profit.
"What they're suggesting at the moment, amongst embryo donation and surrogacy, is importing gametes, and loosening the rules around double-donation [so using both donor sperm and donor egg] - which brings up ethical questions around the rights of the possible children, the importance of genetic links, and how far we are actually willing to push the boundaries of what is ethically/morally acceptable.
"We hear a lot about reproductive rights for women especially, but who is actually speaking for these children? Where are their rights in this equation?"
Emma said that her own experience highlighted some of the difficult experiences donor-conceived children could go through.
Her parents chose to tell her of her unconventional origins when she was just seven, against the advice of the time.
"My parents made it sound like I was unique and special, and they emphasised that my dad was still my dad. They didn't really bring it up again, and I think it would have been helpful to have had more conversations as I got older," she says now.
But, "I know some people that found out they were donor-conceived during an argument or a divorce or following an illness or a death. I've heard some even refer to going through the seven stages of grief after finding out, so it can be a hugely traumatic experience.
"Some feel betrayed, lied to, and that all of sudden they're not who they thought they were. Some donor-conceived feel like they've been thrown into an identity crisis, and really struggle with trying to piece themselves back together, especially if they're unable to find out information.
OVERCOMING THE SHAME
"There has been such shame associated with infertility. As a culture we don't talk about these sorts of things. My parents didn't go through any form of counselling before going ahead with using donor sperm. No one addressed their issues of infertility or counselled my dad before they became parents. They were told to go home, make love and pretend that he was the biological father.
"Just like with adoption, it wasn't talked about openly. People kept it hidden. And, similar to adoption, we're realising that these secrets aren't the parents' to keep. Everyone has a right to know who they are, and where they come from.
"Thankfully, things have changed for the better. Both donors and parents have really good access to specialist counselling now, and have much more support available to them.
"Even the fertility specialists have embraced this new culture of openness, and I think that makes for far more healthier families."
TRACKING DOWN A DONOR
However, Emma also experienced first-hand the difficulty and frustration of trying to learn more about the donor who had made her existence possible.
She started as a teenager, contacting the doctor involved in her parents' treatment.
"Between 2004 and 2013 I asked the doctor to search for my donor to see if he was open to having contact, or at the very least, I could write him a letter. Each time, and there were around four separate searches, he said that the donor couldn't be found.
"My parents wrote a joint letter to the doctor in early 2016 asking for him to search again, and that's when we started to make some progress. Several months later I got a call from the doctor saying that they'd found my donor, but he'd died in 2015.
"It turned out that he'd been in Dunedin all this time (the city where he had donated, and where I was conceived), yet for some reason they couldn't find him.
"That's probably the hardest thing for me: How could they not manage to find someone living in the same city, after supposedly searching multiple times for him? It just doesn't make any sense. I feel like the clinic has failed me in that aspect.
"It took a full year after discovering my donor had died for the coroner's findings to be released. Once I got the call, it took less than 24 hours to have a name and a photo.
"It was strange: I'd had a year to come to terms with the fact that he had died but it was actually quite emotional seeing his picture. The physical similarities were really striking. It felt reassuring seeing a strangely familiar face. He looked like a kind person. I would have loved to have met him.
"I think it's a false idea to see donation as giving or gifting your DNA and then never having anything else to do with the offspring. It's a huge oversight by the system at the time, and individually, it's really naïve of donors to believe there isn't any moral obligation to be available at the very least for medical information."
* Not her real name.
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