UK DonorLink "mistake" exposes serious concerns about registry effectiveness

Last week the Daily Mail reported on the story (Despair of the DNA 'sisters' - 22 Feb 2010) of the two donor-conceived women who had been matched as siblings by the UKDonorLink, a government-funded national volunteer donor offspring registry, but now the agency claims they are in fact NOT related.

To sum up what was published:

Keeley Hall of Perth, Western Australia and Elizabeth Howard of Cambridge, England were matched by the UKDL registry in 2007. After meeting, they developed a close friendship despite the distance between them. However, several months ago Elizabeth received a shocking piece of information from UKDL. It turns out that another offspring matched with her, but this girl was apparently un-related to Keeley. While Liz and Keeley only matched with a statistic of 56.6 times greater of being sisters than not related, Liz and the new donor offspring matched with an index over a million times greater! Yet, Keeley did not match the new offspring. Thus, according to the UKDL, it made Liz and Keeley's match less likely of being a positive result.


Now for some science background information:

The UKDL, as I have ranted about in the past, has recently changed their criteria of what they call a sibling match to a whooping 99% probability. To bring this into perspective, here in the USA, if a siblingship test is needed in court to prove relatedness, 90% is considered conclusive and admissible. The 56.6 index that Liz and Keeley were assigned in 2007 is still at a highly significant 98% probability, well over what is considered conclusive by most testing companies and the US court system. However, they were not able to now reach the new excessively high threshold established by the UKDL of 99% probability.

So instead of admitting that they have changed their criteria and that Liz and Keeley, while they were obviously considered sisters on the old criteria, have been pushed below the new criteria, they argue that the testing measures and analysis have changed (in 3 years) and now they doubt that Liz and Keeley are actually siblings!! It is as if they do not want to admit that their unbelievably high threshold rating is the cause of this "mistake" as it calls into question their own practices and ethics. If Liz and Keeley have been now considered as not being siblings, how many others are in the same situation who have also not been contacted and informed in this "ch???

But the biggest concern for me, however, is that a significant portion of registered offspring DO have siblings on the UKDL registry, but they are NOT being contacted about the possibility!! While setting the threshold at 90%, as most labs and courts believe, provides enough proof that the two individuals are in fact related, it gives some room for leeway. Remember, half-siblings only share approximately 25% of their DNA, so out of the 15-20 markers tested in most labs, that means that true half-siblings should on average only match one allele at 7-10 of the markers!! If none of those matched alleles are very rare in the general population a siblingship index in the 50s, or even lower, as Liz and Keeley's results, could easily ensue.


So what needs to be done?

The UKDL needs to fess up to their outrageous criteria, apologize to those who have been wronged in the process, and set their criteria at a discriminatory yet not impossible level (i.e. 90% probability), so that the offspring registered with the UKDL have a fighting chance to find their relatives, rather than be played by a government-funded system designed to be as little work as necessary for their employees at the expense of human beings right to search, find, and know their biological kin.

It is a situation like what has been made public in the circumstances of Liz and Keeley that has prompted Damian Adams and I to look towards creating our own DNA database for donor offspring, that contacts individuals with any positive (over 50% probability) siblingship index, where they can either consult further testing arrangements, or compare physical genetic traits such as eye color, blood type, location of conception, etc, to determine in their own minds if they are siblings or not.

Siblingship tests are not perfect. They are not 100% conclusive, but that does NOT mean that they cannot provide this valuable information to two individuals. If two potential siblings receive an 'inconclusive' result of say 80%, it should be their choice, not some bureaucratic exec in an office, that decides if they want to believe this as a true match, as unrelated, or as something that needs to be further investigated using techniques like X and Y chromosome testing, or an extra panel of STR markers.

Two years later.....rejection

Exactly two years ago today I found my donor number and was given a meager amount of information from Xytex about my biological father found in his application form. It was not much, but it was more than I had. And I was finally for the first time able to really grasp more of my own identity and search more effectively for my own family.

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As I sit here writing, listening to the ferocious snowy wind outside my window and staring into the winter wonderland which has blanketed two feet of snow over Northeast Ohio....my mind drifts.

When I arrived in the DC community in the spring of 2003 I was angry, hurt, and had nothing to go on. Since then I've tamed my temper (you think I get pissed now, you must not have been on the DSR 7 years ago, when I was an alone and frustrated 18 year old trying to cope!!), and gotten some non-identifying information, and even found a half-sibling!!

I look back over these past 7 years and marvel at how the donor conception community, my own life, and my self-worth have changed and improved.

But let me take you back for a second, as many of my readers were not active back then, I must set the scene to fully explain how it all has changed. The year was 2003, and while it doesn't seem long ago, in the timeline of the donor conception community this was the dark ages. Prior to the year 2000, donor conception was unheard of and was only something that was whispered about in doctor's offices across the globe. Even children (such as myself) who were brought up always knowing they were donor conceived were quiet. There were a handful of adoptees starting in the mid-to-late 1980s trying to advocate for changes, demonstrating the similarities between adoptees and donor conceived persons, but they were disregarded. Wendy and Ryan Kramer created the Donor Sibling Registry in 2000, a virtually unknown Yahoo group/listserv that hoped to connect siblings conceived from the same donor. In May 2003 the DSR was on the Oprah Show, and the donor conception community began to emerge.

It was in the mere hours after the first airing of the DSR on the Oprah Show that I discovered the donor conception community, and realized, mainly, that I was not the ONLY one conceived this way!!! Slowly the belief that I was a freak of nature and should be ashamed of my conception began to lift. I got to know quite a few other offspring through PCVAI and later adoptees, parents, and former donors through TangledWebs, and in 2005 actually had the opportunity to meet many of them while studying abroad in Melbourne!! It was the first time that I knowingly stood face-to-face with another donor conceived person. It took years to fully come to terms with my conception and my identity, and it really is a never-ending process. I still suffer a great loss, and that will never cease, but I now understand that I can (and will) survive. I have a great network of offspring, parents, and donors, that remind me everyday that I am an advocate for change and that has become my mission and passion in life.

The early days/years of the donor conception community was a harsh place, filled with an over-proportionate number of single mothers by choice (SMCs) and lesbians, who were the majority of parents disclosing the method of conception to their children (out of necessity) -- this is still the prevailing status today, but more and more heterosexual couples/divorcees, donors, and adult offspring are also now vocal. These women were typically between 30 and 35 years old and had 1-2 donor conceived children under the age of 3. Back then the DC community was not about the donor children, but rather a pre-social networking era way for DC-mommies to meet and make friends. With that being said, the majority had never met a donor conceived adult, and believed that the thought process of a three-year-old was developmentally equivalent of a 23-year-old.....basically, that because their 3-year-old was perfectly content with being told their biological father is a frozen vial of sperm, adult offspring should also feel that way!!

They were appalled with what myself and a handful of other adult offspring (such as Joanna Rose, Myfanwy Walker, and Narelle Grech to name a few) were saying. Not only did they verbally abuse us, but threatened our own lives because they disagreed with what we had to say. These Yahoo groups became a dangerous place for a donor conceived offspring to speak. I would get private messages sent to my email telling me I was "satanic" and "evil" among other things. The favorite response was that I was an ungrateful little brat for wanting to know my biological father, and for being angry at being denied such a human right.

Sooo....let's flash forward to today. I still avoid those Yahoo groups, I was too emotionally scarred to ever go back there, so I do not know how good or bad it is or isn't, but from what I get from the few brave DC offspring that do enter those realms is that the opinions towards us have improved slightly, as more and more parents and those TTC are seeing the errors with the era of secrecy and anonymity, but that the prevailing attitude is that we should be grateful, and the favored offspring view is the "unharmed" offspring --- i.e. one that does not care to know his or her biological parent. Parents and former donors that argue openly that donor conception can cause damage to the offspring are silenced (heavily moderated and/or banned).

This is a new move since most of us offspring voicing those views were banned years ago!!

One good thing is simply that the media has finally began to get our voices heard. And with the advent of social networking and the blogosphere these few media outlets are multiplied and published across the web and across the world. More and more donors are coming out of the woodwork, and wanting to learn about the children they created. More offspring are learning of their conception, and the kids brought up always knowing are coming of age and entering the community searching for their lost family. And what I see as one of the most positive moves in the last couple years is the increase in blogs like mine (and the others in the left column) being read, referenced, quoted, and hyperlinked.

As I said before advocating for changes in legislation here in the US for banning anonymous paid donors, as well as enlightening the general population and those involved in the infertility industry and donor conception/ART community about the consequences of assisted reproduction, has become one of my central focuses. It's a two-fer. I am able to provide my opinion and a be a resource for those looking for information. I am also able to use this as my own form of therapy. I did the whole therapy thing, and after learning that my therapist had recently adopted a baby from Guatemala, I fired her, realizing that she was not counseling me but rather trying to twist my thinking to support her own decisions. It was not until after going to Australia did I realize I was not "depressed" but rather "repressed" by my family. They did not (and still not) acknowledge my views and speaking out louder was the only cure. Being a part of the few DC organizations I am involved with and blogging are my therapy and a way to vent and educate all at the same time.

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So after that random tangent, back to my initial post topic. Two years ago today I got my donor number. I learned that my biological father was Xytex Donor #2035. He was born February 12, 1961 (ironically his birthday was 2 days after I learned of him). He had brown hair, green eyes (alas, the answer to my uniquely colored eyes that don't match anyone else in my family!!), was 6 foot tall, and had B+ blood type. He graduated from college in 1983, and donated until 1989!! He had a sister four years younger than him.

With this I was able to really search, and able to quickly ignore certain potential siblings based on donor number. I also was able to provide a donor number and information to my half-sister, whose information was destroyed by her mother's OBGYN's office a year ago.

The latest news is that her mother had contacted Xytex and asked if it was possible, if donor 2035 would be responsive, to sending him a letter requesting updated medical history. She also asked Xytex to see if he would be receptive to possible correspondence between him and us. This was shortly after the DNA test confirmed us as siblings, mid-November. Xytex agreed and sent him a certified letter. No word from him for two months and then out of the blue this month Xytex contacted her saying that he returned the medical history update but nothing more. No note, no comment about the children created from his donations.

On one hand I am grateful to have updated medical history. It's important for me to know that my paternal grandfather was diagnosed with melanoma at age 50 (but has been cancer-free for 20 years), and suffered a heart attack and mild stroke at age 65. He has a son that has suffered from allergies since birth. That means I have a brother...... It also means I probably inherited my severe seasonal/indoor/outdoor allergies from my father.

All these things are great to know, but in the same breath this response provides another more subtle answer. Rejection. He knows that me and my half-sister exist. He knows that we are looking for him. Yet he is not even curious. Is he too caught up with work and his family and life to want to know of the daughters he created 25 years ago? Has he even told his wife about his donations, about us? Is he sitting at home right now wondering how to tell her, should he tell her? Or did he respond to the letter without emotion, without even a quiver of doubt that anonymity is best?

My reaction to Lauren's essay

I omitted my own comments about Lauren's essay from the post last night because I felt that it was so beautifully written that I did not want to spoil it by plastering my own meanderings at the end.

For some background, Lauren had written this essay to be published by VARTA (the Victorian Assisted Reproductive Treatment Authority) and found out earlier this week that they would not publish it on their website. She still is unclear what the reason was behind not publishing it, but it's likely that it may simply have stated too much "fact" for their own ideological agenda....

Lauren's essay details the view that many donor offspring hold, whether or not they choose to voice it. The fact that by nature most of us are very sensitive, especially to the feelings of our parents, is key to why our voices are few and far between. We feel compelled to not say anything because we fear hurting their feelings with our words and our actions. We delay searching until it is often too late because we do not want them to think that we didn't love them enough.

As she points out so well, infertile couples are so compounded by their own sense of loss of not being able to have children the normal way, that donor conception is seen as a miracle cure and that the donor is simply a piece of genetic material, a sperm or a tiny egg that makes no consequential difference is the baby that will be in their arms nine months later. They forget that their loss is simply being transferred to another human being, a person that in most circumstances one would think would be the LAST person they would want to hurt...their own child. The parents, not acting maliciously, yet still causing the pain, have now created a child that will forever feel a similar sense of loss (not for the loss of children, but the loss of a biological parent). Unfortunately, the child's loss cannot be "cured" with a medical procedure.

I also think Lauren's story of meeting Ben is something that shows just how successful reunions can be. Donors who are fearful of how their families will react to the knowledge of them being donors or how they might react to offspring coming into their lives, it is in most cases unwarranted. Especially when dealing with the actual adult offspring and not the mothers and young children. We are not seeking money or a daddy. We are seeking answers and the sense that we belong and that we are complete. Relationships are something that can take years to cultivate, but do not go into possible reunion thinking that you would never want a relationship with one of your offspring, because you might miss out on something really great. In the same token, don't expect one to be initiated by your offspring, as we are all different and have different comfort levels, wants, and needs. Let the reunion process guide you both.

Lauren's story gives many offspring hope that they too may find their biological fathers and begin to find these answers and heal. It also gives us hope that not all donors are egomaniacs that only wanted beer money and couldn't bear to admit to anyone that they fathered donor conceived children when they were in college/grad school/residency/etc for fear that it might reflect poorly on their reputation.

A must-read for all DC parents, prospective parents, and donors

By: Lauren Burns - Melbourne, Australia (Posted with permission)

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 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.