Lauren Burns 'donor' conceived perspective

Posted with Lauren's permission


By Lauren Burns

My name is Lauren and I am 26 years old. As a ‘grown up’ donor conceived person I feel it is my responsibility to give some perspective about the long term effects of donor conception. We, the children created from assisted reproductive treatment, are the real experts, but we are not often given a forum to express our views. I hope I will give would-be parents and potential donors some important information that they will take time to think over, and my story will be of interest to other donor conceived people, who may want to meet or network with people from a similar background.

The concept of egg and sperm donation, donors procreating with the intention of not assuming any responsibility or feelings towards the person they have helped create, is a curiously artificial construct conjured by the infertility treatment industry. It is the complete opposite of how parents normally feel towards their biological children. In the early days it was useful in helping clinics recruit donors, and for parents who wished to believe donor conception was truly a ‘cure’ to their own infertility, but what happens when the child refuses to accept that their biological parent is not merely a ‘nice man/woman’ who is inconsequential to their lives?

It is crucial to realise that the decision to use a donor to create a family results in life-long consequences for the child who is subsequently born. Every person I know who is donor conceived (about 15) has been affected by it. It is untrue to claim there are no real issues with donor conception, that as long as you tell the child the truth, and tell early, everything will be fine.

The modern advice is telling children early is the best option, and I agree, however it is important to note that children will not have a static response to being donor conceived, it will change throughout their lives. Young children tend to be very accepting of what their parents tell them, and hence often appear unperturbed by their story. It is not until these children gain the power of critical analysis, perhaps in early adulthood, that they may start question what occurred.

I personally know a 30-year-old donor conceived man who has known his status since early childhood. Initially he accepted it, until the birth of his own child when suddenly, as a father, he realised the importance of the biological link, and what the loss of his paternal kin had meant for him (and his daughter). He does not condemn his parents for their decision, but is now completely opposed to the practise of donor conception, and feels it has negatively affected his life.

The psychology of donor conception is complex because it asks the child to differentiate between the ‘social’ and the ‘biological’ aspects of parenthood. Historically there was never this schism, leaving our language unprepared for it. Thus, even the word ‘parent’ is loaded and ambiguous, so we are left with clunky terms such as ‘biological parent’ and ‘social parent.’

It is vital to think about the importance of the genetic link. Is it relevant or is it completely disposable? How important is it in informing our sense of self (looks, personality, interests) and sense of identity (feeling of belonging, similarities reflected in relatives, being part of a chain)? Parents should not think that if their child expresses longing for knowledge of a biological parent it reflects badly on their parental skills. In my experience my desire to know my genetic identity was actually independent of my relationship with my social parents, because no matter how good a parent they were, it was beyond their control to give me this knowledge.

Donor conceived children are generally smart and sensitive. They want to protect their parents. This often complicates the way they allow themselves to express their feelings about being donor conceived. They are generally especially sensitive about not upsetting the non-biological parent.

There is a lot of literature concerning the feelings of loss and grief felt by adoptees, associated with the denial of a close relationship with their biological parents. This is relevant, because from the perspective of the child, being donor conceived is like being ‘half-adopted.’

Infertility can mean mourning the loss of somebody who has never existed. However, choosing donor conception to overcome infertility can mean transferring the loss so that it is now the child who grieves, in this case for someone they have also never met, the missing biological parent.

When seeking information and/or counselling about becoming a donor or using assisted reproductive treatment, it is important to consider any biases of the source of information. Infertility treatment is an industry and private clinics are ultimately businesses. Although it is in their interest to adhere to medical guidelines, they also have a financial incentive to minimise or even trivialise adverse effects, in order to recruit egg and sperm donors, as well as attract consumers. As far as I am aware, in Victoria, no infertility treatment clinic has shown interest in tracking the long term welfare of the children created from their services, or (with the exception of the Royal Women’s) provided pastoral services to assist offspring dealing with the effects of being donor conceived.

In Victoria anonymous donation is now recognised as harmful to children and has been banned since 1998. However, donor conceived children will still grow up not knowing the identity of their donor during their formative years, and any relationship they pursue after the age of 18 will be retarded by this missing time.

Parents should question how they feel about making the decision, on behalf of their child, that they will be denied a close familiar relationship with one or both biological parents. Adoption was normally deemed the best solution to some crisis that meant the biological parents were unable to care for their child. I feel in this case the deliberateness of the decision to separate kin is significant.

I found out my biological father was a vial of frozen sperm labelled ‘C11’ when I was 21. It came as a complete shock. For me, the overwhelming impression of being donor conceived was powerlessness and lack of choice. I thought it was very unfair that the medical establishment had concocted the concept of ‘anonymous donor’ and this deal had been stitched up without my consent. I felt like the system had exploited my vulnerability by assigning my rights the lowest priority. Whenever I expressed the need that was driving me to search for my donor, I was reminded that I must abide by these decisions, made long ago, that I was never involved in.

I brooded over the news for about three years, not talking much, but thinking about it a lot. I found out that in Victoria, people born after 1988 have the right to apply for information about their donor, but because I was born in 1983 I do not qualify. I thought this terribly unfair because my need to know my genetic identity was just as real as somebody born after this arbitrary date. Despite this, I did find my donor, but I had to move heaven and earth to do it.

I reached a turning point when I met Narelle (a donor conceived woman) and eventually met up with members of an organisation called TangledWebs (www.tangledwebs.org.au). (The name comes from a poem by Sir Walter Scott, “O what a tangled web we weave, when first we practice to deceive.”) It was a huge relief to talk to people with a similar background to myself, who shared my view that donor conceived people have a basic right to information about their genetic identity.

I went public and had two newspaper articles published in The Age. It was stressful to ‘blow my cover’ and tell my story where I knew it would be read by an unknown number of friends, relatives and acquaintances. However the long-term effects have been very positive because I have freed myself from secrecy and received a lot of encouragement. The experience also taught me the power of personal stories in helping shape public opinion.

I met with key politicians regarding the Assisted Reproductive Treatment (2008) Bill. Sue Pennicuik (Greens) tabled an amendment to allow all donor conceived people to apply for information about their genetic identity, regardless of when they were born. This amendment was only defeated by five votes. (Hansard Legislative Council 4 Dec 2008 pg 50). Unfortunately, at the time we only knew a few donor conceived people who were willing to meet with politicians. Most politicians who voted on this amendment had never actually met and listened to the personal story of somebody who is affected by it.

I changed strategy. My mother remembered the name of her former treating doctor so I sent him a letter outlining my story. To my delight I wasn’t ignored. He suggested we meet, and gave me a background of his work in male infertility and donor conception programs spanning 25 years. I was flabbergasted to discover I was the first donor conceived person he had ever met! This highlights the huge disconnection between the medical focus on treating infertility as a ‘disease’ that can be ‘cured’ by prescribing donated eggs/sperm/embryos like medicine, unaware or unconcerned about the lifelong impact this may have on us, the human beings created from these treatments.

I asked if he would be willing to write to my donor on my behalf. He said he would have to think about it and consult with a colleague. A few months passed. I was in a tightly wound state. I felt a familiar feeling of powerlessness as the outcome now rested on the personal ethics of one person. One Thursday in early August 2009 I heard back. He had sent the letter. After this, things moved really quickly. The very next week I received a call from Kate from VARTA with big news. Firstly, I didn’t need to ever refer to my biological father as my donor. His name is Ben.

After exchanging letters and talking on the phone we arranged to meet. The day before, I discovered I would be meeting his children, my half-siblings. I was nervous, especially the night before and day of the meeting. As I approached the gate, Ben’s son called out “Lauren’s here!” in an excited voice and ran to greet me. Immediately I felt more at ease. I said hello to everyone and we sat down to lunch. I had a surreal moment as I looked around and realized I was surrounded by people who looked like me. I realized the clinics were wrong. We are family, at least in some sense of the word.

Finally I understand why people comment that my sister looks Swedish and why I am interested in flying and space. Ben and I share an interest in reading and literature, art, sports, napping, nature and the outdoors. After all my efforts in the media, law, and political lobbying, I was also gratified to discover that my paternal grandfather was a somewhat notorious agitator of the establishment.

I still have three missing half siblings, two boys born in Dec ’81 and July ’84 and a girl born in Aug ’81, all to separate families. I joined the pre-1988 voluntary register, but there were no matches. Have their parents even told them they are donor conceived? If they or their parents are reading this article, I want them to know that they can find me in the voluntary register. I am waiting for them.

Does anyone else feel like times a bit of a healer??

I've been 18 for 7 months now and since I found out I was so impatient to turn 18 so I could 'legally' start searching for biological relatives and join Donorlink UK. However, since actually turning 18, I've found that I'm no where near as impatient to start looking and although I have filled out the registration forms to join Donorlink I am no longer in such a rush to send them off and take my DNA test.

Does anyone else feel that with time, you stop worrying or thinking about it all as much? I will never give up hope for finding my family and will always and have always wanted to. I don't know if I believe time is a healer or just whether now I know I can legally start looking I'm not in such a hurry...

Donor Conceived DNA database

I'm just now getting a chance to post this here.....since I blogged about it on Cryokid several weeks ago....but it's just so important that I felt it was necessary to mention it here as well.

Damian Adams (Donated Generation) and I uncovered the mathematical equations required to determine siblingship -- ie how to take raw DNA profiles and compare two individuals (ideally with their mothers as well) to determine the probability of these two individuals being half-siblings.

While Damian and I are excited about the nerdy aspects of this (actually cracking the code!!), the importance for every other donor conceived adult is what we plan to make of this discovery in the future.

Our goal is to create a web-based database where an offspring can upload their DNA profile (basically your personal results from a paternity and/or siblingship DNA test.....the 15-marker tests) and their results will be scanned against every other person in the database looking for individuals that have a combined siblingship index over 1.0.

The number 1.0 is important, as it is the "threshold" between suggesting non-relatedness and suggesting relatedness. Indexes below 1.0 mean the two individuals are likely non-related, with the smaller the number being more likely that they are not related. Indexes above 1.0 mean the two individuals are likely related with the larger the number being more likely that they are related.

We are proposing a revolutionary project for offspring. One that will contact two individuals if they score over 1.0 on our combined siblingship index. With numbers very close to 1.0 (typically numbers under 10), it is a very grey area and we cannot conclude one way or another if the two individuals are related or not. It may be that both mothers need to be tested, or possibly a company that performs a test on more markers. However, we WILL contact anyone who receives even an inconclusive yet over 1.0 score, and it will be up to those individuals to decide where to go from there.

There are two other projects in the world similar, yet our proposal is seen as a way to fix some of the issues of the other two.

UK DonorLink has been in effect for several years now, where UK offspring and donors can submit their DNA to the database and siblings and/or parent-child relations will be notified. However, recently we've learned they are ONLY contacting matches that are over 99% probability. That means two offspring that receive a very high (and actually conclusive based on legal precedence which states 90% is considered legally acceptable) but not high enough to be 99% probability, are never contacted that such a possibility even exists! We know that siblings have been found with significantly lower probabilities and that denying offspring to knowledge of a possible sibling is continuing the injustice we already suffer from in the first place.

CaBRI is an American non-profit company founded by former donor Kirk Maxey. He has created two projects, Donor Y and Donor X, where offspring and donors can submit their DNA and it will scan their databases for matches. However, the caveat is that because these tests only look at the X and the Y chromosome, siblings can only be found of the same sex. Males inherited their Y chromosome from their biological father. Any male half-sibling would share the exact same Y chromosome, so male-to-male sibling matches can be made. Females inherit one X chromosome from mom and one from the biological father. Thus a female offspring and her mother must be tested and the X chromosome that came from the father would have a sibling match if another female offspring's X chromosome that came from her biological father was the same. However, CaBRI does not have database capabilities to determine siblingship in opposite sex cases, unless the donor has his DNA on record as well. They can do private autosomal DNA tests however those results are not in the database. We want a database that ALL offspring can find ANY sibling possible, regardless of sex.

So that about sums it up. Damian and I are very excited at these prospects and are working diligently to create some sort of automatic database. For the time being however, we would be happy to take any DNA profiles (we strongly suggest also providing mom's DNA as well) and we will manually scan them through our currently very small database. The more offspring to submit their DNA, the more likely we will be finding matches!!

Currently I have been working on a personal project with offspring and donors from Xytex, so please email me if you would like to be included in this as well.

Our methods DO WORK. I found a half-sister through Damian and I's hard work, and I hope to connect many more siblings in the future!!

This really cuts to the heart of the problem with the disconnects that even 'open donors' create.

I wanted to address/respond to this quote by Laura Witjens (An 'egg donor' and Chair of the National Donation Gamete Trust in the UK)in this article:

"Finding Your Biological Family" http://www.guardian.co.uk/lifeandstyle/2009/sep/26/finding-biological-family-donor-register

Laura Witjens: "I would try to help them find any missing links, but I would resist letting them call me mother because I am not. I am absolutely clear to my own children that I have only one daughter and one son, and that although there may be people out there who have a bit of mummy in them genetically, they are not my children."

Although I'm very grateful, on one hand, that Laura Witjens (An 'egg donor' and Chair of the National Donation Gamete Trust in the UK) promotes 'open donors', I think this really demeans the importance and responsibility of biological/genetic parents NO MATTER HOW A CHILD IS CONCEIVED. The intentionality of 'they are not my children' is not respectful or deserving of respect.

This really sums up why I am very much against the practice of 'donor' conception as a whole. She IS their mother. Her 'non-choice' children are just as much her children as her 'choice' children. Yes, her 'non-choice' children have other loved ones but that does not absolve her from responsibility – ESPECIALLY emotional responsibility. This really cuts to the heart of the problem with the disconnects that even 'open donors' create.

"Journey into the bubble" - New blog by a donor conceived woman

Very interesting/worthwhile read:

"Journey into the bubble"
http://journeyintothebubble.blogspot.com/

____________________________

"Open Letter to Alison"
I have been reading Alison's blog (http://journeyintothebubble.blogspot.com/) and I am both heart sick and awed by what she has shared. Alison if you are reading this, I hope you consider sharing your story with the media or in a way that draws attention to your/our plight.

We live in a world of competing sorrows but rarely is the plight of the 'child' (who are children for a VERY short time) to know/be known/loved/supported by ALL the people they come from and belong to, reported on in a balanced manner as the plight of the reproductive (and personal relationship) angst of 'adults'.

Alison, thank you so much for sharing your deeply personal story and thoughts. I hope by doing this you will find a donor to heal you and the 'donor' (your biological father/half siblings/extended family/ancestry etc.) to complete you.

Birth Certificates

There is a lot of debate in fertility “circles” about birth certificates and many court cases whereby one or both of commissioning parents seek to have their names put on a birth certificate where otherwise it would have another persons name on it under law.
Rather than address the legal status of each person in relation to the child and their place or lack thereof on a birth certificate I wish to analyse what a birth certificate actually is and what should occur as a result.
A birth certificate is supposed to be a truthful and legal document which describes the progenitors of a child. It is a pedigree that traces our genealogy. It is our heritage. Historically the progenitors of a child were always the raising parents which were traditionally married or in a de-facto relationship. So the people that raised you were also your biological father/mother and appeared on your birth certificate as such. The problem now is that because your biological parents may not be the ones that raise you due to some fertility treatment procedure, the birth certificates can become a fraudulent document when a non-progenitor is placed on it instead.
Just as we use pedigree papers to trace the biological lineage of animals such as dogs, cats, horses etc, we can and do use birth certificates for the same purpose in humans. Historians and genealogists use them to trace a person’s heritage and history. If we replace a progenitor on a birth certificate with a social parent then we create false history and the truth becomes clouded by lies. We are rewriting history with erroneous claims.
It would appear as though the non-biological parent who seeks inclusion on the birth certificate or replacement of the biological parent does so out of fear that the child will then not recognise them as their dad/mum. There is no evidence to suggest that this is the case. There is too much emotion placed on a birth certificate when none should be placed on it at all. It is purely a document describing the genetic history of each person, it has absolutely nothing to do with who raises or loves you. They can be two entirely separate things and should be kept separate when it comes to creating a birth certificate.
Those who are a party to a fertility treatment and subsequent rearing of child but are not the progenitors can still be recognised as the legal parent of the child without having to be on the birth certificate. It is time we recognised the truth and recorded the facts on birth certificates rather than play deceitful games with fraudulent documents. It is up to each country/state to decide if they also wish to include the social/non-biological parent AS WELL on the birth certificate, or to create additional documentation detailing the legal parenthood of each child. What they should not be doing is usurping the truth.
My birth certificate is a lie and not worth the piece of paper it is written on, is yours?