Aug 08 2018
Under the Microscope – Sarah Dingle
DNA analysis is a powerful tool for researchers, scientists and law enforcement. But in the everyday lives of people across the globe, affordable access to DNA testing has brought about a seismic shift. For the first time, donor conceived people can find their biological fathers, mothers or siblings. Donor conception has exploded in the last three and a half decades, but around the world it faces little regulation. Fertility clinics public and private have operated without limits on the numbers of children created from individual donors, without health checks, and largely with impunity.
In her presentation at ISHI, Sarah Dingle (an Investigative Reporter with ABC) will draw both from her published work and personal experience, and explain how people conceived under “anonymous” sperm or egg donation regimes can now find their biological family with nothing more than their own DNA – genetic material from the donor is not required. We sat down with Sarah and asked her how common sperm or egg donation is, how anonymous donations can impact a person who has been donor-conceived, and how the rise of commercial DNA testing has opened doors.
Hi Sarah, thank you for presenting at ISHI! The rise of commercial DNA databases have been life-changing for many, and I think your presentation is going to be eye opening, and share a point of view that many have not yet considered.
First, can you tell us how common sperm/egg donation is in Australia and around the world?
It’s impossible to say for sure, either in Australia or globally, because there is no definitive register of sperm or egg donors – in any country. Sperm donation has been around for longer than egg donation. Sperm donations have historically been anonymous, and although countries like Australia and the UK have now ruled that once offspring turn 18 they have the right to identifying information about their donor (whether sperm or egg), there is no compulsory or definitive list of donors in either country. In Australia, a 2010 estimate by the Victorian Assisted Reproductive Treatment Authority put the number of donor conceived people in excess of 60,000. Estimates in the US are between 30,000 to 60,000, although given the much larger population of the States, I expect this is a significant underestimate.
Typically, these donations have been done anonymously. What impact does this have on a donor-conceived child?
We know anecdotally and from research that people conceived under anonymous donation regimes are likely to be troubled by that fact – if they are aware of it. (Research from Australia and overseas indicated that the majority of heterosexual “commissioning” couples do not tell their donor-conceived children the truth about their origins.) A landmark US study in 2010 comparing donor-conceived children, adopted children, and children raised by their biological parents found that of the three groups, donor-conceived children were suffering the most. They were hurting more, feeling more confused, and more likely to have struggled with addiction and delinquency than adopted children. Only one state in the US has mandated that donor conceived children can know their donor. That was just seven years ago – and even then that sperm or egg donor can opt out.
The desire to know your biological parents is common to donor conceived people around the world. An international 2011 study of 741 donor-conceived people showed that more than 80 per cent wanted to be in contact with their donor one day. This was across all family backgrounds – children raised by heterosexual couples, single-sex couples, and in single parent households.
What rights does a donor-conceived child have when it comes to knowing who their biological parents or potential half-siblings are?
It depends on what country you’re born in: what state you’re born in within that country: what clinic “made” you: the year in which they did so: and finally, the good (or ill-)will of the medical staff within that clinic. Suffice to say, a donor-conceived person’s right to any information about their biological parents is extremely tenuous. Even if there is a legal path to finding information, often medical records have not been kept, or they have been destroyed with impunity.
Even in the most progressive legal regime in the world, the state of Victoria in Australia, identifying information will only be disclosed if it officially exists – and a donor can still refuse all contact. There is no guarantee of any right to know biological siblings unless the other sibling consents.
How has the rise of commercial DNA testing opened doors for those who are donor-conceived?
Commercial DNA testing breaks down all the barriers between donor-conceived people and their full human identity. This is a huge game-changer. Donor-conceived people have been lied to about their origins by families, doctors, and the law (in the form of birth certificates). They have been denied their full human rights as human beings – despite being “made” in clinics, those same clinics have never recognized them as patients of that service, with any right to service records. Contact between donor conceived offspring and their donor parent has been deliberately denied by some clinics, even if the donor is willing. In most jurisdictions, unlike adoptees, even if records exist and have not been destroyed the majority of donor-conceived people do not have a legal right to identifying information about their biological parents or siblings. This runs counter to Article 8 of the UN Convention on the Rights of the Child, which upholds the right of the child to his or her identity and family.
DNA testing cuts right through this impossibly tangled web. With DNA testing, donor-conceived people can find their donor – and also their biological siblings. Given that commercial tests are now so widespread, the databases of the likes of Ancestry or 23andMe have reached a critical mass for donor-conceived people searching for family. This means a donor conceived person can find biological family with nothing more than their own DNA. The implications are huge – it has the potential to level decades of lies, coverup, and patchy and inconsistent regimes.
Navigating genealogy databases can be challenging and multi-faceted. Are there organizations that assist donor-conceived children with locating their families?
There are organisations and individuals, both paid and unpaid, who assist donor-conceived people with locating their families. Some DC people decide to conduct the whole search themselves: it’s their mystery to investigate. Others enlist help from the likes of DNA Detectives. I personally got in touch with some of my distant cousins on the genealogy databases, one of whom helped me unravel my past.
Do you think sperm/egg donation will decrease now that anonymity is no longer guaranteed?
Despite the cataclysmic implications for the fertility industry, I personally believe that medical practitioners and the general public remain unaware that change is here. People don’t realise that you can find your biological family using only your own DNA. Once that realization sinks in, I believe we will see a shift in donation practices. It may not be as simple as a decline in donations – it may also be a shift in the types of people who are willing to donate, for example.
You’ve taken a personal interest in sperm donation stories. What were some of the motivating factors?
Once I realized I was donor-conceived, I of course began to research the history of the practice and what (if anything) were my rights. While I was thoroughly disappointed with the latter, the former turned out to be fascinating and ultimately incredibly rewarding. Donating gametes is, of course, not just history. It is also the present and the future – every time someone makes a donation there is an extra complication added to society for years to come. A best practice scenario – ie disclosing the truth at an early age to your child, and making sure they know their donor and all their biological siblings, and that there are strict limits on those siblings – will ensure that a donor-conceived child has just as good a shot at life as anyone else. Sadly, this remains rare in every country where there is donor conception.
Let’s talk about some of the people you spoke with in your reports: which stories were the most surprising? Heartbreaking? Satisfying?
The most surprising story, I think, was that of Matt Doran, an American who decided at age 25 that he wanted to find his own biological father. Matt’s decision was prompted by the birth of Matt’s first child – which is a common story for DC people. Often those who choose to bury or ignore the truth about their biological origins will willingly go there for the sake of their own children having answers.
Matt’s records had been deliberately destroyed, so Matt did a DNA test and found his biological cousins… and his biological father. When Matt went around to meet his cousin in person for the first time, the cousin popped an old VHS tape in the player. It was an episode of a 1990s current affairs TV show called Hard Copy – which was an investigation into Matt’s biological father for fathering up to 500 children. That’s probably the craziest upfront introduction to your own biological parent that I’ve ever heard of.
The most heartbreaking story was that of my friend Rel – Narelle Grech. She was probably one of the first DC activists of my generation -which is to say, one of the first DC activists in history. Rel knew she was donor conceived from a young age. She started trying to find her donor as a teenager, but hit wall after wall with the clinics and the law.
Her search took on extra urgency in her late 20s when Rel was diagnosed with Stage 4 bowel cancer, which is terminal. It was highly likely that her cancer – being so advanced in a young person – was a result of genetic factors. Rel wanted to find her biological father and siblings to warn them that they needed to be screened for the cancer. If Rel had known her own genetic risk, she could have been screened from her mid-teens onwards – preventing a diagnosis when the disease was fatal.
Rel never got any answers out of the clinics, but the then Premier of Victoria, the state in which Rel lived, personally intervened in her case just before he stepped down. Rel was finally told who her biological father was, and also met a half-brother. Rel and her father, Ray, got on like a house on fire. They had less than two months together before Rel died of bowel cancer in 2013. Ray was, and is, devastated.
If you could speak directly to those who operate fertility clinics, what would you say to them?
I have spoken to them a number of times. I guess my message is always the same: you are not God, and all of your patients are your equals – you should treat them as you would wish to be treated yourselves. Would you like to have five hundred siblings? If the answer is no, then don’t make hundreds of children from the same male donor – and actively take steps to ensure there are protections in place across the board to prevent this happening full stop. Most importantly, “patients” doesn’t mean “customers” or “adults” – “patients” is a term not confined to the commissioning parents paying your bills. The most important patient a fertility clinic can have is the child they quite literally make. The child’s interests and human rights come first and must be upheld in the first instance, as they are throughout society. Everyone else comes second.
What does the future hold for you?
I hope to continue speaking out for DC people, and advocating for the human element of the baby business. Happily, I’ve reached my own personal resolution. Having found my own biological family through a DNA test I consider myself free from the system which did everything it could to trample my human rights, and the rights of others.
Thanks for talking with us Sarah! If you’d like to see Sarah speak in person, you can register for ISHI through the link above.
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