WHEN Lauren Burns listened to the Prime Minister’s national apology to those who suffered forcible adoption, she wanted to ask: what about me? It wasn’t that the 29-year-old Melbourne woman didn’t find the speech moving. She believes the mothers and children so cruelly separated deserved the apology.
But she, and so many like her, felt left out. Lauren is one of thousands of children (exact figures are not known — in the beginning records weren’t kept) born as the result of donor sperm or eggs, who believe they too have been denied an opportunity to know their biological parents.
It was these words which most affected her: ‘‘To each of you who were . . . denied the opportunity to grow up with your family and community of origin, we say sorry. We acknowledge that many of you still experience a constant struggle with identity, uncertainty and loss and feel a persistent tension between loyalty to one family and yearning for another.’’
‘‘I found it incredible that the Government was apologising to adopted people for the very things that are still happening via donor conception and surrogacy,’’ Lauren says. ‘‘It was frustrating that almost nobody except us could see that by simply inserting ‘donor conception’ for ‘adoption’, the PM could have been speaking to us. She promised no generation of Australians would suffer the same pain and trauma they did. But it’s not true.’’
Many donor-conceived children feel they are treated as inferior citizens, especially when secrets continue to be legally protected. There are no uniform regulations in Australia. In Victoria you’re guaranteed access to your donor’s identity only if you were born after 1998. Those born from 1988 to 1998 get access only if the donor consents. The rest have little hope. All they can do is put their names on a voluntary register and hope their donor does too.
Melbourne father Ross, 35, (surname withheld by request) describes an ‘‘enduring yearning’’ to know his genetic father.
‘‘I know how tall he was, his eye and hair colour, complexion and blood type. A pretty lousy list when you consider what a father has the potential to be. But at the moment, it’s all I have,’’ he says.
Some think that’s enough. Dr Doug Keeping of the Queensland Fertility Group says: ‘‘The code of secrecy has worked well for 25 years. Why spoil it for fairly theoretical reasons?’’
Donor offspring don’t think their reasons for wanting to know their biological parents are theoretical.
Lauren says: ‘‘There is a commonly held belief that since we were so wanted by our social parents, our biological kinship links shouldn’t matter. But there is still a loss experienced from not knowing biological family and not being able to trace where your looks, personality or interests come from.’’
Ross describes the battle of the donor conception community against the profitable reproductive technology industry as being like an ‘‘anchovy against a whale’’.
Lauren says she knows of a donor-conceived man who felt so much like a product he had a bar code tattooed on the back of his neck. And how is someone conceived from an egg donated in Eastern Europe, sperm donated in the US and born to an Indian surrogate mother supposed to find all the people involved in creating them?
Lauren found her father three years ago after a five year search. Holders of her records refused to hand them over because of legal advice. With the intervention of the then Victorian Governor, David de Kretser, (her mother’s treating doctor), her donor was found. While Lauren still has time to develop the relationship, a friend had merely four weeks.
Lauren and other donor-conceived offspring are grieving the loss of Melbourne social worker Narelle Grech, who died this week of cancer, aged 30. An advocate for retrospective rights to information about their biological identity, she was denied information about her biological father, Ray Tonna, for whom she searched for 15 years. But because she was dying, former Victorian Premier Ted Baillieu intervened and her father was found. Tonna and son Zac found and lost a daughter and sister in the space of a month.
The co-ordinator of the Donor Conception Support Group, Caroline Lorbach, says she is sad and angry the system made Grech fight for information which should have been hers.
The group is waiting for Victoria’s response to the Parliamentary Law Reform Committee 2012 report’s recommendation that all donor-conceived people know the name of their donor, no matter when they were born.
‘‘I hope the Government decides it needs to open up all the records so that no one else has to go through what Narelle did,’’ Lorbach says. If we acknowledge the pain of those forcibly removed from parents, then the pain of these children must be acknowledged also.
Published in the Sunday Herald Sun March 31, 2013
Call for Victorian Government to ensure equality for donor conceived children: Change petition
Melbourne woman Myf Cummerford has created a Change petition calling on the Victorian Government to protect the interests of donor conceived children.
“The welfare and interests of persons born or to be born as a result of treatment procedures are paramount”.
This is the first guiding principle of the Victorian Assisted Reproductive Treatment Act 2008 the legislation governing ART practices (including Donor Conception) in Victoria.
Donor conception is conception using donated gametes (sperms and eggs) or embryos.
There are likely several thousands of donor-conceived people who were conceived in Victoria prior to 1988, and more than 5500 have been born since then. Many of these people will be unaware that they are donor-conceived.
• People who were conceived from gametes donated in Victoria after 1998 are entitled under legislation to obtain identifying information about their donors when they reach adulthood.
• People conceived from gametes donated between 1988 and 1997 can only access identifying information about their donors with the donor’s consent.
• However, people conceived from gametes donated prior to 1988 have no legislated right to obtain identifying information.
This means that if you are donor conceived, your ability to access vital information about your genetic parentage and identity entirely depends on the date the gametes used to conceive you were donated. This has created a complex and confusing situation of differing rights and abilities with many serious implications. Read full petition wording here
Interview with Jennifer Lahl, director and producer of Eggsploitation and President of USA-based Center for Bioethics and Culture Network
Reproductive technologies are a massive global enterprise. But these technologies would barely exist without the thousands of egg donors who provide their eggs to help others become pregnant, or for research purposes. We know little about the individual women who go through this process and the possible risks to their health.
A new documentary film, Eggsploitation, produced by The Center for Bioethics and Culture, exposes the human egg trade and the lack of informed consent through the personal stories of real women donors whose lives have been irrevocably harmed. The egg harvesting process and absence of proper consent is described in the film as “reckless endangerment of vulnerable women.” Many will be surprised to learn there is no long-term follow up of donors.
Donald Landry, Chair of the Department of Medicine at Columbia University, says of the film: “Eggsploitation renders the medical risks of paid egg donation with care and truth in every detail and makes a thoroughly devastating case against the commodification of women and their eggs.” You can see the trailer here:
I recently interviewed the film’s director Jennifer Lahl.
Tell me a little about the genesis of Eggsploitation – why did you make this film? How did you find the women who shared their stories?
I’ve been writing and speaking in the area of reproductive technologies for almost a decade. The more I discovered about the exploitive side of reproductive technologies – using poor women, women in need to “help” – the more I became concerned about the global reach and largely under or un-regulated booming business. Most of the women found me through the internet where they discovered my writings. In fact, just this week, another egg donor emailed me, wanting to share her story of her “near death” experience so that other women can be spared what she went through. I think these stories are just the tip of the iceberg and we shall see that all is not well with many of these reproductive technologies which have largely been sold uncritically as a good thing.
What has been the reaction so far? How has the IVF industry received it?
We just took the California Independent Film Festivals Best Documentary Award for 2011. Internationally we are getting a lot of traction and interest in the film, for example here .
We’ve sold the film into nearly 20 countries to date and have had requests from four countries to translate the film into their language. Our largest critics have been those heavily invested in reproductive technologies/infertility clinics and those who mainly make their livelihood in this business. Also, women who have used egg donors to help them have children have been critical. Funny, the caveat is typically added that we need to do a better job monitoring and protecting egg donors, but they’ve been largely critical of the film, which really exposes the short and long-term health risks placed on egg donors.
In the film you show ads recruiting for egg donors with wording like ‘Make a difference today’ and ‘Answer her prayers’. Some of these ads appear on Facebook. Is playing on a woman’s altruism the main way donors are secured? Or in countries where payment is offered is it primarily financial considerations? Some ads seek donors who are aged 21. Can a woman so young and less likely to already have children of her own make an informed choice about donating?
On the question of informed choice, how can anyone be informed when we’ve never bothered to do the long-term studies to understand the risks? And isn’t informed choice very much tainted when coupled with money, especially when there is financial need. Everyone realizes when you are in need of money you are willing to minimize any risks you may be informed of, or just ignore them.
I find it curious that last year in the U.S. there was a federal law passed which prohibits credit card companies from advertising credit cards in school papers or on campuses across the country. There was great concern that students would get access to credit cards and graduate from school with a lot of debt. While the industry says that these are bright young women who can make an informed choice, one has to wonder why then this credit card law passed almost without notice or complaint from the public. So why aren’t we concerned that young women graduate with their health intact?
What are the main risks of egg donation?
Main risks fall into two categories: short-term and long-term.
Short-term risks of ovarian hyperstimulation syndrome (OHSS) which can be mild, moderate or severe cannot be underestimated and pose a real danger to the health of the egg donor. There is a risk of infection and bleeding related to harvesting the eggs. One woman in the film suffered a major brain stroke, another had a torsioned ovary requiring its removal. Another woman had internal bleeding because of a bleeding artery near the ovary, which went undiagnosed for many hours. She ended up in intensive care. Longer-term risks are associated with cancers (reproductive and non-reproductive). Also, depression and anxiety and other psychological factors related to the powerful hormones they take and thoughts about any children produced from their eggs.
The film cites an “alarming absence of data on women who donate” and points out that “decades of data” have been lost because there is no tracking or follow-up. Do you find many people are surprised to know that risks are not studied and that there is no follow-up of donors – or in fact any women who underwent IVF treatment – to check on their health?
Overwhelmingly, when I’ve shown the film, people are first, educated about the process of egg donation – most people have no idea what is involved – and secondly, they are aghast with how little oversight and long-term follow-up or studies have been done on egg donors.
The women’s stories are particularly shocking. Stroke, colon cancer, brain damage breast cancer, ovarian cancer, etc. But defenders of reproductive technologies will say that these are just a few rare and extreme cases? How do you counter this?
I often hear, ‘well this is unfortunate, but these cases are rare’. In response, I say the burden is on the industry to prove that these cases are indeed rare. And how many women need to be harmed before something is done to change this practice? How many dead or harmed women do we need before the industry changes their practices? I know many more women who have reached out to me with their terrible stories. I couldn’t interview them all. We picked the women in Eggsploitation because they all agreed to be filmed for our documentary, they all live in California, where we made the film (we did have budget constraints as filmmaking is a timely and costly enterprise) and we felt their stories were representative of the other women who have shared theirs. Some other women I have interviewed, I would have liked to have included in the film but, because of contracts they have signed, they are required to remain silent. I feel the image artwork for the film is very telling of the ways women have been silenced, ignored, and used and forgotten.
So many women felt dismissed. It wasn’t until they were at critical stage did they get properly examined by a doctor or admitted to hospital. There seemed to be a reckless attitude to their health. (eg it wasn’t until Alexandra was vomiting faeces that she was admitted to hospital). Did the level of dismissal of these women when they presented with problems, take you by surprise?
It saddened me. I worked as a nurse for two decades and to hear how these women were ignored by those in the healthcare professions really upset me. I’ve shown the film on university campuses, and I’ve been shocked to hear some students complain that these women didn’t advocate strong enough for themselves. Of course, if you have seen the film, you will hear how these women did try to advocate for themselves. I think it is hard to keep pushing when a doctor or nurse is telling you, “This is typical” or, “This is normal” or “This is to be expected”. And remember, these women have entered into this agreement largely because of their financial need, and studies have shown, once someone has agreed in their mind to do something, they are often committed to seeing it through to the end.
How are the women doing now? One said she is infertile now as a result of egg donation, which, as well as tragic, seems somewhat ironic.
Of the women in the film who are still alive (we also highlight stories of an egg donor who died of colon cancer and an infertile woman who died of OHSS), they either cannot have children or are struggling with their own fertility now. One of the women also went on to develop cancer in both breasts. I often wonder how their infertility will affect them psychologically, knowing that they may not be able to have children because of something they did to help another have a child. A very sad and bitter irony.
While this is a (U.S) $6.5 billion a year industry, and while there are 17,405 IFV cycles in the US a year using donated eggs, the film says that in the U.S 70 percent of IVF cycles fail. Yet I think most people wouldn’t know that. How is the industry able to cover that up?
Well this is a big global business and advertising the huge failure rates of IVF technologies sure isn’t a winning business strategy. And they are dealing often times with couples who are desperate to have a child, and who will do all sorts of things to hopefully have a child. I have spoken with many infertile women who have readily admitted that they would do anything to have a child. Even spend lots of money on a largely failed enterprise. So the industry exploits this desire and plays down failure rates.
The pressure on women to donate isn’t only because of the need for eggs to make babies is it? What else is driving the demand for eggs? If they are used in stem cell research, for example, are women informed about where their eggs will end up?
In the U.S, egg donation is unregulated. Eggs don’t leave a women’s body and get a barcode on them, so we can’t know where they end up. When one mother in our film asked her daughter’s egg broker about children created with her daughter’s eggs, she was told by the broker that there was no way to know where her daughter’s eggs went or if children were created using her daughter’s eggs. So, some women may be informed where there eggs end up, but I suspect, that is often not the case.
It is sometimes pointed out that we allow people to work in risky jobs and to be paid for doing so eg film stunts, bridge construction. What do you say to the argument that competent adult women should be able to decide for themselves whether take on the risks and donate their eggs?
I rarely see the risks admitted. Visit any egg donor website or read any egg donor ads, you won’t find risks mentioned. Women are told they are doing is just helping out, and they are being compensated for their time and trouble. The industry doesn’t want to admit the risks to the procedure and very much want to advance the notion that this is a safe, routine and minimally invasive procedure, therefore compensation is never sold as something to offset risks. I quite frankly would welcome them admitting the risks and dangers and stating they are compensating women because they are asking women to roll the dice with their health! But if that is the case, the payment structure would be very different because bridge workers and stunt experts carry millions of dollars in liability insurance to protect them because the nature of their work is inherently risky. I highly doubt the infertility industry will carry such policies for the protection of women egg donors. They want to have their cake and eat it too.
Do you agree that the possible exploitation of women suppliers could be avoided by the usual processes of medical research, such as full risk disclosure, consent forms, ethical guidelines, mandatory record keeping and proper long term monitoring of suppliers?
This is a tough question for me to answer as it requires we stop the practice now and go back and do retrospective studies on large sample sizes of women who have already done egg donation. That is what is required to give any meaningful informed consent. We can’t possibly give proper informed consent now, even if laws were enforced mandating it, because the studies have yet to be done. And we will have to do studies, tracking women over a long period of time to understand cancer risks, and psychological risks. But immediately, we have to take the money out of this issue. Exploitation goes hand-in-hand when women need money and are willing to do risky things with their health. And I cannot emphasize enough that the egg donor is not a patient, she’s not a sick person who assumes medical risks because she has a medical need. And she’s not assuming a risk because another person’s life hangs in the balance (e.g. organ donation). How egg donors are treated in the U.S and many other countries would never pass any internal review board for any sort of clinical trial. It’s really quite tragic.
What efforts are being made to regulate the practice around the world? What are the main obstacles to tighter regulation or to some kind of moratorium or end to the practice?
It seems to me the global battle typically is framed around the compensation issue. For example in France and Canada you can’t sell your eggs, but in the U.S. you can, and often for a hefty sum of money. Of course these types of ad hoc laws encourage trafficking in eggs (women) from one country to another. Here in the U.S the main obstacle is the fertility industry which has no vested interest in regulation, and they are a wealthy, strong, and powerful lobbying block here. Secondarily, those who want to use these technologies have rejected efforts put forth by myself and others as it is seen as a takeaway of reproductive rights and choice.
In Australia in 2002 law was made to allow experimentation on ‘leftover’ embryos. Then in 2005/ 2006 the law was further extended to allow creation of cloned embryos from donated eggs. Now the push is to extend it even further to allow payment for eggs. What do you think of this?
I find it particularly alarming that we would build any scientific enterprise on the reproductive bodies of young healthy women. The risks assumed by these women is the same, whether their eggs end up in an IVF clinic or a research laboratory. I live in California, where the battle for SCNT research is a fierce debate, (ironically sold to us as “cures cures cures” with no sign of cures in sight). Dr. Gerald Schatten, the infamous U.S. partner of South Korea’s disgraced Dr. Hwang, says that he is terrified of financial reimbursements to young women egg donors and that OHSS is a life threatening risk. He cautioned my state, saying, “If California moves superfast in stimulating thousands of women, when the first woman dies (he didn’t say IF, he said WHEN) for the sake of cells in a plastic dish, this is going to be a nightmare, and I am seriously worried.” This is from a cloning researcher.
Cold term cannot disappear central experience of pregnancy and birth
Gestational carrier is an ugly term
THE objectification of women’s bodies and commodification of childbirth came together yesterday in a single antiseptic phrase contained in the announcement of a second child for actress Nicole Kidman and her musician husband Keith Urban.
The baby’s birth three weeks ago took even dedicated “Our Nic” watchers by surprise, including Woman’s Day which had the couple adopting a Haitian child.
“Our family is truly blessed . . . to have been given the gift of baby Faith Margaret. No words can adequately convey the incredible gratitude that we feel for everyone who was so supportive throughout this process, in particular our gestational carrier.”
In those last two words, the woman whose body nurtured this child for nine months is stripped of humanity. The phrase is reminiscent of other terms popular in the global baby-production industry, such as suitcase, baby capsule, oven and incubator.
The detached language views women as disposable uteruses. This dismantling of motherhood denies the psychological and physiological bonds at the heart of pregnancy.
The euphemisms soothe: don’t worry, there is no mother whose voice the baby hears, no mother whose blood carries nutrients to the developing child, whose heart the child hears. No mother feeling first kicks, whose breasts swell, whose entire body and mind prepare for her arrival.
US ethicist Wesley Smith said he was reminded of “Dune’s ‘axlotl tanks’, which are women who are lobotomised and then their bodies used as gestational carriers for clones.”
But doctors prefer it.
On Australia Talks Back, November 9, 2009, Canberra IVF specialist Martyn Stafford-Bell said “gestational carrier pregnancy” was the preferred term.
Surrogacy was a good solution for women “unable to house a pregnancy” and a woman carrying a child with no genetic connection understood “she is, in fact, an incubator”. Some surrogate mothers use these terms to distance, because surrogacy erodes the inherent maternal-fetal relationship.
“I am strictly a hotel,” one said.
Donna Hill, who experienced a toxemic pregnancy followed by a traumatic induced labour which she hoped to forget, said, “I told myself I was just an incubator. I was just going into an operation and not giving birth.”
Sydney surrogate mother Shona Ryan told a Canberra conference: “I had to forget I was pregnant. There was not the same joy and wonderment. In some ways I felt sorry for this baby that it didn’t receive the same attention [as my others]. I had to deny the pleasures of pregnancy.”
After the birth: “My subconscious, my body, my emotions, knew I’d given birth and were screaming out for that baby. I kept having the urge to tell people, ‘I’ve had a baby!’
“The personal cost to me and my family [was too high]. I came to the conclusion I couldn’t recommend surrogacy to anyone.”
Of course the birth of any baby is worthy of celebration. But that doesn’t mean we should avoid hard questions about the fragmentation of motherhood, about a child who may wonder about their birth mother and why she is not raising them.
We can’t keep our Eyes Wide Shut about the exploitation of women in countries such as India where a booming surrogacy industry, described as womb slavery, attracts rich foreigners. And questions need to be asked more broadly about the global trade in the use of gametes in a range of reproductive procedures.
The Daily Mail recently ran “The brutal fertility factories trading in British mothers’ dreams” to describe vulnerable women trading in the only valuable thing they possessed: their fertility.
In the US commodification of a child knows few limits. Journalist Bill Wyndham, pretending to be a single, HIV-positive gay man, was told by a surrogacy company he’d make a perfect dad.
He was, however, not allowed to adopt a puppy from the dog pound.
We don’t know the background of the surrogate mother. Was she a student trying to pay off college loans? Had she given birth for other couples? Did she have the option of changing her mind? Will there be any future contact between the mother and child? Does she have other children who are asking where the new baby went?
Some women have been unable to relinquish. Mary Beth Whitehead, US surrogate mother in the famous Baby M case, said: “Something took over. I think it was just being a mother.”
Jane Smith from Sydney said of the son she carried: “I couldn’t let him go.”
Another surrogate mother has said: “In the beginning it is easy to see things in an unrealistic way. When there is no real baby, it is easy to be idealistic.”
In 1997 a baby called “Evelyn” became Australia’s first litigated surrogacy case when her surrogate mother couldn’t give her up.
The raft of celebrities hiring out surrogates to have babies for them has became almost a modern day form of wet nursing.
But the lack of objective evidence about the long-term impact of surrogacy on the surrogate mothers, the children and the families of the commissioning parents is concerning.
The process of pregnancy, labour and delivery followed by summoning extraordinary reserves of strength to surrender that baby, cannot be reduced to the science fiction that the woman who does all this is merely a “gestational carrier”.
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