Thursday, November 26, 2009

Happy Thanksgiving...oh yeah, and be grateful to have been born

On this day almost every American family gathers together to eat roast turkey, mashed potatoes, stuffing, cranberry jell-0, and of course pumpkin pie. It is also a time that most families spend reflecting on their lives and all that is good.

Well, my extended family does the former, but very rarely do we actually make it to the latter. There were close to 20 of us at dinner this year, always held at my cousins' house about an hour away. There's never a holiday that goes by in my family without some sort of argument or crisis that involves some sort of yelling or taking sides. This year it was comments by a non-family member about our President which raised many eyebrows and sent a few of our more conservative relations out of the dining room in a pissed off flurry. Well, that comment and the fact that she unwillingly called 4 different people fat, and told several others they needed to get married! All the "adults" -- basically my parents, aunt, uncle, and my mothers cousins -- then argued about who held the Christmas get-together (a supposed monthly dinner outing for the so-called 'adults') last year and who should holding it this year. Apparently it's now going to be the day after Christmas at my parents' house........that took all of 45 minutes of intense arguing to decide.

Oh the joys of family.....

So anyways, on to more important discussions here.

As I mentioned, my family kind of misses the entire point of Thanksgiving. We spent more time gossiping about other family members and arguing.

So maybe I come by the fact that I'm un-grateful for being born honestly.....or maybe not.

Being grateful for our lives is something that EVERY donor-conceived child is indoctrinated with from day one.

  • We are told that our parents' medical or social infertility is a terrible thing and that they wanted us so much that they used a special person to help have us!
  • We are told that we should not need our biological parent and that loves makes a family! Despite the fact that our parent(s) chose donor conception over adoption so they could have at least a partially genetically-related child, we are told that genetics are not important and that it's the person that changes our diapers that is the real parent.
  • We are made to feel as though we hold the weight of our parents' infertility pain, and that that pain is far superior to any pain that we could possibly ever have, and thus we must be happy with our perfect lives.
  • We are informed of the immense costs involved in IVF and ART and that we were very expensive children to conceive and thus must be more loved and more special than any other child.
  • We are made to feel excessive guilt if we even THINK that we would want to know our biological parent.
  • We are taught to love our social parents so much that we could not even think of possibly hurting them to find our biological family.

This only cuts to the surface of all that donor-conceived children are put through in their lives to be made to be grateful to have been born. But you know what, I'm just going to say it now because it needs to be said, loud and clear.

If I had to choose between being conceived with half of my identity and half of my kinship deliberately denied from me for eternity....or never being born? I'd choose never being born.

Now, before you go call the suicide hotline on me, let me explain. First off, if I was never born I would never know that I was never born and thus there is no loss involved. There would be no one to grieve my non-existence because they would not know that I did not exist. This is not a terrible thing, despite what many people may think. However, since I am born and I am a 24 year old woman, I HAVE A LOSS, and that loss is my biological father. We were not adoptees, where supposedly they were rescued from an abortion or being thrown in a trash can, and are subsequently told to be grateful to be alive. We were created to carry a loss. A loss that no human being should have to endure.

If a child is born and their father has passed away sometime between conception and birth, we as a society sees the injustice and the unfair life dealings for that child and feel sympathy for that child's loss. While this is indeed a loss for that child, he or she has dad's extended family in their life, pictures and stories and memories. As donor-conceived children, we are not given that luxury. We are seen as a cure for infertility and nothing more. We are seen as "miracle children" that are so loved and wanted that nothing else should matter. No one feels sorry that we are not able to ever know our biological father, because "he just jacked off in a cup for money" and "he could be a murder...or worse, a communist", and "he signed a contract and his privacy is more important".

Well, you know what??? I'm sick and tired of being grateful - of being just "happy to be alive" - of being so wanted that nothing else is important!! So I'm ungrateful.

I'm ungrateful and I wish I was never born to be denied the right to know my biological father.

Monday, November 23, 2009

The search for a sperm-donor father

Update: It's been confirmed with Y-STR tests that Rob and Kevin are NOT siblings. If you think that you may be related to either of them, please contact me and I will connect you.

The search for a sperm-donor father
Toronto Star
November 22, 2009

By: Megan Ogilvie, Health Reporter

The two young men have the same broad, sloping foreheads, straight brows and receding hairlines.

They both like baseball – they're Blue Jays fans despite the winning drought – are outspoken and articulate, and have a similar barking laugh.

Four months after finding each other, Rob Hunter and Kevin Martin also want to know if they share something else: the same biological father.

Hunter, 24, and Martin, 23, were conceived with donated sperm. In the mid-1980s, their mothers sought help from the same small fertility clinic at the Health Sciences Centre in London, Ont. After their husbands were deemed infertile, the two women chose to be impregnated with a stranger's sperm. Neither one wanted – or was encouraged – to meet the donor.

Now, almost a quarter of a century later, Hunter and Martin want to know the identity of the man whose DNA helped form every cell in their bodies.

But in Canada, where egg and sperm donors have the right to remain anonymous, Hunter, Martin and other donor-conceived children face a long, often futile, search to find their genetic origins. And they are fed up with playing detective.

"There's this whole half of me that is completely missing," says Hunter, who has been looking for his biological father for two years. "To be asked why you want to look is like asking why you have to breathe. It's an essential component of human nature to want to know more about yourself and how you got to be here."

The first big wave of donor-conceived children, born during the fertility industry boom of the 1980s, is now coming of age. Vocal, motivated and often furious, these young men and women are banding together to tell the fertility community that anonymous donation is wrong.

They say it is their intrinsic right to know their genetic background, that they are being denied critical information about their medical history, that they are worried they might unknowingly have sex with a half-sibling. And they possess a deep desire to learn their full family heritage.

In recent years, they have received support from ethicists, psychiatrists and social workers who have seen first-hand how donor-conceived children struggle to form an identity. They point to adoption, which has become largely a child-centred practice, and ask why infertile couples and the fertility industry have yet to place children first.

Research, too, is showing the majority of donor-conceived children who meet their donor and half-siblings report that the new relationships have a positive impact on their life.

Other countries, including Sweden, Austria and the United Kingdom, as well as a number of Australian states, have decided a child's right to know their genetic background supercedes the parents' and donor's right to privacy.

Donor-conceived children say it is time Canada did as well.

"I don't think anyone could say, if they found out their dad was not their real dad, that they wouldn't want to know who has the other half of their DNA," says Martin, a fourth-year international relations student at the University of Windsor.

"That I don't know who he is just keeps coming up over and over again. It's something that eats at you every day."

HUNTER AND MARTIN are meeting for the first time at a Kitchener train station on a drizzly morning in late autumn. Until now, they have only corresponded by email and sent each other the occasional text message.

They had planned to meet at a coffee shop in the same Waterloo plaza where Hunter owns an ice cream franchise. But Martin's train from Windsor was delayed, and Hunter had an afternoon meeting in Toronto, so they end up first shaking hands in the entranceway of the Kitchener VIA station.

After a few minutes of small talk, the two sit next to each other on a long wooden bench in the station's waiting area. Like a blind date, the meeting is full of shy smiles, stilted conversation and sideways glances. Both men admit they had trouble sleeping the night before.

"I tell you," says Hunter, turning to look at Martin. "I used to have long hair, I used to have very long hair and it was exactly like that."

Martin glances at his shoulder-length mane, then softly chuckles.

Hunter was 22 when he found out how he was conceived. His grandmother, after drinking one too many toddies, let it slip during an evening visit with her grandson.

"She looked me right in the eye and said, `You know your dad is not your real dad,'" says Hunter, who confronted his mother the next day. "It was heartbreaking to find out that she had kept that from me for so long."

Five months later, when Hunter became curious about his biological father, he called the London fertility clinic. It took six months of badgering doctors and social workers before Hunter was told his donor's number – 188 – and another year before he learned that his donor had brown hair, brown eyes and was born between 1959 and 1964.

It was not enough.

"There's so much curiosity," says Hunter. "I want to see how we're alike, how we're different. Is he in business? Is he not? Does he run marathons? All the stuff that is unique to me, you wonder how much of it comes from my mom or comes from the environment or comes from the donor."

In June, Hunter was featured in The London Free Press in an article about sperm donation. Martin's mother saw it and passed it on to her son, who then contacted Hunter to find out how he had learned the few details about his donor. He also had to find out whether Hunter could be his half-sibling.

"The resemblance was striking," Martin recalls. "I've never met anyone who more closely resembles me in my life. It's quite scary."

Martin has known since he was 12 that his mother used donor sperm to conceive. "I remember sitting on my couch, and she told me that I was born thanks to a group of people who wanted to help mothers have babies."

It was only when he turned 20 that Martin says an overwhelming curiosity compelled him to search for his sperm donor. He also began to wonder how he could spend the rest of his life missing half of his identity.

"It's impossible to comprehend what it's like not to know," he says. "I began to think of myself as being oppressed as a citizen as opposed to someone who just doesn't know who their father is."

Monday, November 16, 2009

Even more about DNA half-siblingship tests

With this new database on my mind, I thought I would blog more about these tests and what they can and cannot tell you --- since in the past 9 months I've been through 2, I've learned quite a bit more about these tests since I last really blogged about them (see "To test or not to test....DNA half-siblingship tests").

So after learning about the UKDonorLink and their system to NOT contact all potential sibling matches (unless their index is at 99% chance), I started wondering, what really SHOULD be the dividing point between yes and no. The answer really is, it depends on the situation at hand. Since paternity is a black and white answer, most assume that so is siblingship. It's not. It's based on a scale of relatedness from below 1.0 being not related and above 1.0 suggesting relatedness. The closer the score is to 1.0 the more room for ambiguity. The farther away from 1.0 the more likely that the two individuals are either related or not (depending on which direction the score is).

Up until the past few weeks I was unsure what real tried-and-true sibship test results looked like. I knew the higher the index the more likely the two are related, but I assumed there was some sort of maximum (like 100). I had in my mind that scores between certain ranges were either suggestive, inconclusive, or conclusive. It's less-so about the score, but rather the percentage. Scores only slightly over 1.0 receive percentages around 60-70%. A score of 5 is about 83%, a score of 10 is already at 90%. Scores between 10 and 30 are between 90-97% chance of relatedness. Once the scores go past this point they slow down as they reach closer and closer (yet like an asymptote they never reach) 100%. Siblingship indexes can skyrocket way over 100, up into the 1,000s for full siblings - never reaching 100% probability, but nearing closer and closer.

Thus, the probability is what people should be looking at when they see their scores. In the US scores below 90% are considered inconclusive and inadmissible in court. If offspring wish to only accept conclusive results, then anything over 90% would be conclusive that they are in fact siblings. Indexes below this point but above 1.0, the individuals can decide for themselves what they want that result to mean. Some believe that the possibility of two offspring being more distantly related (cousins) as opposed to siblings is unlikely. Yes, it's possible that the donors could have been brothers (offspring would be first cousins). Anything beyond that however (cousins of greater degrees distance) is almost impossible, because even second cousins share only about 4% of their DNA, so the chances of matching on multiple alleles is beyond coincidence.

The importance of having mom's DNA is something I cannot stress enough!! For example, with my new half-sister, according to Damian and I's original analyses (not counting our mom's genotypes) our indexes were between 0.7 (41%) and 1.6 (61%)!! Bring in mom's DNA and our index shot up to 573 (99.8%)!!

So how are siblingship indexes determined???

Siblingship indexes are a measure of the statistical probability of two individuals sharing one or two biological parents. The index is the odds of the individuals being the alleged relation. An index of 2.0 for example, means the odds of the two people being related as 1 in 2. An index of 573 means the odds are 1 in 573. An index of 0.01 means the two individuals 100 times more likely of NOT being related (1/0.01).

For each marker (loci) a single-locus index is determined. It is a complicated mathematical equation that is dependent on a) what each individual's genotype is, b) what each individual's mother's genotype is, and c) what the frequency is of the alleles in question.

Here's some examples to explain this.........

Example #1: If mom 1's genotype is AB for a marker and child 1's genotype is AC, then the child must have inherited the A allele from mom and the C allele from dad. If mom 2's genotype is BD and child 2's genotype is BC, then child 2 must have inherited allele B from mom and allele C from dad. These two children would produce a match based on both alleles HAVING to have been inherited from dad, and the index would be based on the frequency of allele C.

Example #2: If mom 1's genotype is again AB and child 1's genotype is also AB, then it cannot be determined which allele was inherited from mom and which from dad. If mom 2's genotype is AC and child 2's genotype is BC , with allele C being inherited from dad, then these two children would still match because of allele B, but the index would be significantly lower than the index in example #1 because it must take into account the fact that there is only 50% chance of child 1 inheriting allele B from dad. This index is based on the frequency of both allele A and B and the probability of these two children sharing allele B.

Example #3: If mom 1's genotype is AB and so is child 1, while mom 2's genotype is AC and so is child 2's, then the children both match on allele A, but for neither of them can their mother's allele be excluded. This index is based on the frequencies of alleles A, B and C, and is even more drastically lower than examples #1 and #2.

Example #4: If mom 1's genotype is AB and child 1's genotype is AC, then the allele from the dad is C. If mom 2's genotype is BC and child 2's genotype is AC, then the allele from dad had to have been A. Thus, even though child 1 and 2 both have allele C, it is inherited from opposite parents, and thus the children are not a match on this loci.

A non-match index = 0.5, the prior probability.

Then the indexes for each single-locus are multiplied together and that is the combined siblingship index.

I hope that answers some more questions, and as always please send me an email if you have more questions!

Typo fixed: In Example #4 child 2 should have inherited allele A not allele C from the father.

UPDATE: See 5/22/2010 post (What do my siblingship test results mean?) for information about results.

Wednesday, November 11, 2009

Find half-siblings through NEW DNA database

Exciting news today to report........

Lindsay has found her first half-sibling!!!!!

ANDDDDDDD......myself and Damian (Donated Generation) are starting a FREE database for donor conceived adults to submit their autosomal and/or Y-STR DNA tests to be scanned against everyone else in the database to search for potential siblings.

Now, for many of you you're thinking isn't that what they're doing in the UK with the UKDonorLink?!? My answer is YES and NO. See, UKDL has made an executive decision to ONLY notify offspring that have a match that is at 99% probability. That means there could be tens (maybe hundreds, I'm not sure how many members are in UKDL currently) who are NOT being contacted of possible siblings that score a combined index over 1.0 (threshold for relatedness) simply because their results are not 99% conclusive.

Even here in the USA, courts accept 90% probability of siblingship as legal, so the UKDL administration is simply not holding up their end of the project.

So, Damian and I propose a free database where any individuals that are found to hold a combined siblingship index OVER 1.0 will be contacted!!! It would then be up to those two individuals to decide if they want to continue on to a professional test based on other knowledge (place and time of conception, clinic, sperm bank, etc). We do NOT advise any "matches" to take our results as proof. We wish to act as a screening tool so that offspring are not put through the emotional and financial hardships of routinely going through DNA tests to find family.

A bit more about the combined siblingship indexes:
The combined siblingship index is a series of special equations (that Damian and I cracked) that take into account the frequency of different loci's alleles in the general population. Basically, this means that some alleles are VERY common, say 50% of the general population. That means if two potential siblings share this allele it does not mean much, and receives a very low index.

Compare this to an allele that is very rare in the population, say 0.03 (only 3 out of 100 people have this allele). In this case, the index would be a larger number because the chances of two unrelated individuals sharing this allele is more unlikely, and the chances of two people who share this allele being related increases. Remember, we inherit one allele from each parent.

So, on a 15-loci DNA test, each of the 15 loci that have an allele that is shared, that index is going to be greater than 0.5 (often around 1.5-5.0 on average), and for loci that there is no allele shared the index stays at 0.5. This is because there is a 50% prior probability. The indexes for each loci are then multiplied together and that forms the combined siblingship index.

1.0 is the threshold. This means that anything below 1.0 is conclusive that there is non-relatedness between the two individuals. Anything that breaks the 1.0 combined siblingship index means it SUGGESTS relatedness, with the higher the index the more likely it is that the two individuals are actually related. I say suggests because half-siblingship tests cannot be 100% conclusive. Half-siblings share 25% of their DNA, so on a 15-loci DNA test with two alleles at each loci, that means that half-siblings share on average one allele on only 7-8 loci!!! This is why, unlike paternity tests where a child must have an allele present that matches one of the alleged fathers at EVERY loci, these frequencies and special equations are IMPERATIVE!!

It is also imperative to have mother's DNA samples as well if at ALL possible, as it excludes which allele came from her, and thus increases the index for an allele that matches if it HAD to have come from the alleged shared father.

This database idea came out of the experimenting that Damian and I did in response to receiving previous DNA test results from a potential sibling. After assessing both her and my results I realized that we matched at 10/15 markers!! However, I did not know if this was significant or not, so I set out to find the frequencies and equations to determine a siblingship index. After finding several articles, databases, and programs, Damian and I together toyed with the information and came up with indexes anywhere from 0.8 and 1.62 (without mom's DNA) to 100, 147, 235, and 315 (with moms alleles excluded), using different programs, equations and frequencies!! We knew we had a HUGE range in results and that a professional test was necessary to confirm the analyses we did.

We also were missing my mom's alleles on 4 markers that had not worked in our last DNA test....if all 4 continued to match our index would be much higher. HOWEVER, if all 4 of those markers that we matched at were found to no longer be a match (because the allele I actually inherited from my mom was the one I matched with). In this "worst case scenario" I calculated our index to be about 5.8. This would NOT be conclusive or significant, but it would be over 1.0.

We realized however, that if the professional results came back in the same ballpark, that we had cracked it. We could essentially analyze DNA results!!

When the results came in this morning everything was confirmed. My new half-sister and I are 578 times (99.8% chance) more likely of being half-siblings than non-related!!! And Damian and I discovered a way to pre-test for siblingship and have a basis for a DNA database for offspring worldwide.

So what we propose is a database that will provide offspring with direction and a sense of hope. Direction into whom to do further confirmation tests with, and hope that despite not having any information that there's still a chance of finding siblings.

We want to provide the services that no one else has been able to give to donor conceived adults. UKDL has dropped the ball. They cannot be trusted to give this vital information to offspring even when they hold the answers. CaBRI, the non-profit X and Y chromosome database for offspring, it can only find siblings of the same sex. The registries cannot fulfill the needs of older offspring who do not have donor numbers. And the infertility industry has spent incredible time and energy refuting, demeaning, and denying donor conceived adults for several decades now, and it is time that we take control over governments, DI mommies, and the industry, and put our futures back into our own hands.

Contact Lindsay here if you would like more information or would like to submit DNA test results!

See more about siblingship DNA tests, and the Combined Sibship Index in my post "Even more about DNA half-siblingship tests"