Welcome to the first article in this 3-part blog series: ‘Truth and Lies, and How to Minimise the Risks’
In this three part blog series, you’ll hear from sperm and egg donors, donor recipients and donor-conceived people about their experiences of lies, and the subsequent impacts on donor-conceived children…
* Note: all names have been changed to protect the individuals’ privacy.
Part One: Do Sperm and Egg Donors Lie?
In 2007, an American couple gave birth to a child after using a sperm donor. The donor had an IQ of 160, multiple degrees in neuroscience and a clean bill of health. Seven years later the parents discovered – through an oversight by the sperm bank – that their donor was, in fact, a college dropout, a convicted felon and diagnosed with schizophrenia. He has 36 known donor-conceived children.
Do sperm and egg donors lie sometimes? Yes, they do.
Adrienne*, a donor recipient explains that her sperm donor was adopted, a status which in isolation is, of course, no cause for concern (other than, possibly, for the adopted person). However, when it comes to donor conception, knowledge of one’s medical history is paramount. Adrienne goes on to explain, “He knew he was adopted. He didn’t know who his birth parents were at the time, so he provided the medical history for his adoptive parents.”
How do sperm and egg donors get away with lying?
If sperm and egg banks do all of the screening they claim on their websites, how do donors get away with lying, or in the case of Adrienne’s sperm donor, lying by omission?
One reason is that it’s simply not possible to validate everything in the donor selection criteria process.
For instance, the medical history of a donor’s extended family cannot be legally obtained without the consent of each individual in question. So that leaves it up to the donor to report honestly, and if there’s a financial incentive involved – which U.S. sperm banks in particular make no pretence at concealing – then perhaps he or she feels a little fib won’t hurt anyone.
What about the ‘unknown’?
Another important aspect to consider is that when a donor’s profile is ‘captured’ by the sperm or egg bank, it represents but a moment in time. As such, there is a possibility that the donor’s family has not yet identified an inherited disease or disorder, and this creates an unknown risk.
Furthermore, a donor may not actually know what caused her grandparents (or other family member) to die. Did they die of ‘old age’, a phrase that provides little or no information for ancestors concerned about inherited disease and disorders? Or was the donor herself told a lie about the way in which her grandparents, parent or aunty died?
And let’s face it, many couples that conceive naturally while ‘in love’ (or other) may do so while being lied to, or with ignorance regarding genetic or criminal histories.
Apparently the situation is more complex than it appears…
But let’s get back to the lying.
The risk of inherited disease and disorders
Donor-conceived woman, Freja*, has eleven half-siblings that she knows of, and six of them suffer from chronic migraines (that’s 50% in case your maths is as bad as mine). “Anytime I’ve asked the [donor’s] family if the donor has, or has had migraines, they refuse to answer. Migraines are highly inheritable, and our biological mothers do not have them.”
Freja explains that the donor’s brother was a little circumspect about answering her questions. “He admitted to having migraines himself, but would not tell me whether the donor [his brother] did or not when I asked. It seems logical to assume he lied on the medical screening.” According to Headache Australia, migraine varies in prevalence worldwide, and the incidence is estimated at 10-15% in European and American countries.
Donor recipient, Chen*, chose a donor from a sperm bank and then made an unpleasant discovery. “My partner was able to find someone who we were considering to be our donor on the Internet. After looking through his Instagram photos, we learned that his mother had cancer two years ago.”
As previously mentioned, donors must disclose the medical details of their extended family to ensure genetic ‘themes’ can be identified. While not pleasant for the donor’s mother in question, Chen goes on to explain that this news was upsetting. “This was not disclosed on his sperm bank’s profile, and he had supposedly updated his health records very recently. If he was lying about his mother having cancer, what else could he be lying about?”
Chen chose another sperm bank and a different donor.
What about sperm and egg donors who donate at multiple clinics?
Are there people who donate at one clinic, and then, without disclosing this fact to the clinic up the road or across the border, pop in to the ‘donation suite’ there?
Chelsea*, an American donor recipient, tells us that yes, this does happen. “The donor I used for my kids said that he hadn’t donated elsewhere. Three older half-siblings prove otherwise.”
What about egg donors?
Egg donor, Suparna*, was a member of a donor group where people openly discussed their experiences. “I saw some women discussing falsifying information about relatives’ height, their deaths, and even their own medical information and medication use.” Suparna was dismayed and shocked. “It’s reprehensible”, she said.
What about Australian fertility clinic-recruited donors?
Do sperm and egg donors tell lies in Australia, our land of golden soil where donors cannot be paid (other than for reasonable out-of-pocket expenses) or be anonymous? Do the lack of financial incentive, and the knowledge that their donor-conceived children will learn their name and address in 18 years (or less) create a culture of truth telling? Are all Australian donors upstanding citizens with purely altruistic motives?
According to Jim*, an Australian donor, he doesn’t lie and why would he? “My info was true and accurate”, says Jim. “I donated, not sold my sperm. So there was no need to embellish the information.” (More about whether being paid to donate influences behaviours in another post coming soon…)
Does this mean that all Australian donors never lie?
According to Narelle*, the answer is no. “My daughter was conceived using a local Australian guy from a fertility clinic in South Australia. Donors are asked whether they’ve donated somewhere else and he had said, “no”. Narelle discovered this wasn’t quite accurate however. “After meeting with some other mothers of donor-conceived kids, I discovered that one of them was my daughter’s half-sibling. She’d used a donor from a clinic in Canberra. The same guy.”
Let’s hear some more lies…
More inherited disorders
Genevieve*, a donor recipient, has connected with other parents who used the same donor; there are currently 21 children in the sibling group. “Our group has a high rate of autistic spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), sensory processing disorder (SPD) and generalised anxiety disorder (GAD).
Three quarters [75%] of the known siblings have one or more of these disorders.”
And Genevieve believes the group of 21 donor-conceived children have many more siblings out there. In fact, the sperm bank informed her that they will never know how many babies were born, because they don’t take accountability for following up with recipients.^^
“We don’t have one straight couple in our group”, explains Genevieve, “and none of our non-US families have come forward. There’s likely to be four times as many kids [who have used the same donor].”
According to a 2015 Australian government report, autism presents in 1 out of 150 people (less than 1%). The American Centers for Disease Control and Prevention (CDC) puts the number of children with ADHD at 11%.
What about criminal activity?
Do sperm and egg donors have to undergo police checks? Might you one day discover that the biological parent of your child is a convicted criminal?
It may surprise you to know that donors do not have to undergo police checks, neither here in Australia, or the U.S (even though donor recipients who undergo assisted reproductive treatment in the state of Victoria must do so).
Dinithi*, an Australian woman who used a U.S. sperm donor explains that she was shocked after one of the other mothers in her sibling group uncovered some information about their donor. “Our sperm donor seems like a really nice guy. His profile includes a lovely letter to any kids that are born, and he talks about his own family in a very lovely, caring way. What he obviously forgot to mention (and technically I suppose he didn’t have to) is that he has three criminal convictions.”
Dinithi goes on to explain her concerns about the risk of donors not requiring police checks. “And look, they’re not terribly bad things [the charges], I mean one was about underage drinking which is nothing really, but it frightens me that the [sperm] banks don’t check this stuff. Imagine if he was a rapist; how would we tell our kids about something like that?”
And what about donor recipients? Do they lie?
Of course! It happens (and look out for blog post, coming soon, ‘How can known donors protect themselves against donor recipients?’). For instance, unless you undergo assisted reproductive technology in Victoria, you can lie about your criminal charges. Or the STI you picked up from your last partner in between the screening test and the next donation. Or the story you told your known egg donor about how much you’d love to have 6-monthly catch ups, when your true intention is to spirit your newborn away and block your donor from social media at the first nappy change?
What’s the point of highlighting the lying?
Let’s be clear: this is not a free-for-all, malicious smear campaign designed to paint all donors as dirty, rotten liars.
The fact is, there are literally thousands of wonderful, honest sperm and egg donors out there who give people who wouldn’t otherwise have the opportunity, the ability to have children, myself included. And I, for one, am eternally grateful.
The main purpose of this article is to help potential recipients understand that just because your donor – or sperm or egg bank – says something is true, doesn’t necessarily make it so. And that some of the things that are not true or omitted, can have significant downstream effects, not just for you and your donor-conceived child, but for your children’s children as well.
And in the case of some international sperm donors who donate multiple times a week for several years, the potential for harm escalates significantly when they conceive dozens, or in my daughter’s case, hundreds of children.
Apart from all of the aforementioned risks of lying, sometimes it’s easy to forget that at some point the story stops being about us, the recipients. Because the reality is that one day, your little donor-conceived child will become a thinking, feeling, fully-grown adult who may wish to seek out her half-siblings and biological parent(s). And DNA testing is making this easy.
And what might he or she discover?
Do sperm and egg banks cut corners?
And what about the sperm and egg banks themselves? Do they make it easy for donors to lie? Do they cut corners?
And perhaps, more importantly, what can you do to minimise the risks of deceit and accidental omission?
Stay posted!
Find the answers to these two big questions in the next two articles in this blog series…
Part Two: Do Sperm and Egg Banks Cut Corners?
This article provides further examples of what sperm and egg banks do (or don’t do) regarding their donor selection criteria. Find out some of the ways in which corners may be cut by some banks, and the potential impacts for donor-conceived people and their families.
Part Three: 12 Ways you can Minimise the Risks (When Assessing Donor Profiles)
Make sure you read this article to discover a huge range of tips and hints – from people who have done it – about research techniques that identify when your potential donor or bank may be stretching the truth, and whether your donor’s profile is accurate!
Other blog posts coming soon:
‘How can known donors protect themselves from donor recipients?’
Join in the Conversation on Facebook
I’d love to hear what you think of this article about truth and lies! Have you had an experience you’d like to share? What were the outcomes?
Join the conversation HERE on Donor Conceived and Beyond’s Facebook Page.
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