Tuesday, December 15, 2009

DONE WITH GRADUATE SCHOOL!!!


So I took my final exam this afternoon and I've put the finishing touches on my practicum binder, and Lindsay is finally done with her masters degree!!! I technically graduate on Saturday, but I'm playing hookey instead of going to commencement!! Actually, my momma and I have our last run of the year as elves on the Polar Express, and it's the night all our friends and their children are coming (and some kids I babysit for), so I think we have about 1/4 of the our car filled with "our people" so it's gonna be a BLAST!! I will be sure to post pics soon!

I promise I will get back to blogging more regularly in 2010. I know I've been chaotic the past few months on and off blogging, but it's tough working 4 different jobs AND school!!

My sisters are home on Friday from college so it'll be our full house again. My one little sister auditioned and won an internship at Disney World as a performing character (either Mickey, Minnie, or Donald - based on her height), so we're all so excited and proud of her!! And of course we're planning a vacation to DW in March which I'm PSYCHED about!!

Well, I'm off to bed for the evening. I had a bad cold this past weekend and I'm still recovering slowly. I feel alive again, but still not back to where I want to be, especially during the holiday season!

Tuesday, December 1, 2009

Return defective donor children. Money-back guarantee!

From Shawn Vandor's blog today:
In April, 2009, a New York Federal judge ruled that sperm banks can be sued under product liability laws for failing to detect that a sperm donor has a genetic defect. The case clears the way for a 13 year-old retarded girl from PA. to sue New York-based IDANT[1] using sperm with a mutation known as “Fragile X”[2] which caused her to be born mentally retarded.

So, if human sperm is officially a product, what does that make the child born via donor insemination? In the future, will parents be able to return their children to the cryo bank if the child does not meet the parent’s specifications, you know, if the child’s not blonde enough or not good enough on the violin? When is that going to start happening?

In the absence of any significant federal or state regulation of the Cryo banking industry the threat of lawsuit is a very good thing. But, consider this: this isn’t exactly like a consumer being sold a faulty product, who is somehow injures and then seeks a claim; this is the faulty product itself suing the company that made it (in this case, a her). I don’t think this has happened before. Ever. Imagine a single Toyota Prius suing Toyota for assembling its breaks incorrectly!


[1] Owned by the DAXOR CORPORATION. You’ve really got to see their website: http://www.idant.com/ All it needs is some ‘80s David Cronenberg-esque analogue synthesizer and we’re all set. No but seriously. Who would by human semen from a company called IDANT who proudly proclaims: owned by the DAXOR CORPORATION? Also, my life might be at risk for writing this footnote.

[2] No, I’m not making this up.

You know, this really cuts to the heart of the issue of being commodified human beings. Where will the line be drawn?? In our society we already do not place value on human life (even that of our own children). How many women abort their children because of finding a genetic defect? Shawn takes this one step further, stating that if a parent can sue a sperm bank for defective products, and the law has essentially put us in the same category as plasma TVs, what's to stop a parent from sending their newborn (or naughty toddler, or uncoordinated child, or rebellious teen -- even one that has brown hair and green eyes instead of blonde and blue, or is not tall enough!!) back to the sperm bank, stating that it was not the product they asked for. If they were told that their donor was a medical student with a 1500 SAT, and their child is flunking middle school, they can say their sperm was defective.

Now, let me point out, there is a difference between donors unconsciously passing along defective traits to their offspring and parents saying their child is defective.

In the court case above, the child has Fragile X syndrome, a hereditary condition (X-linked dominant, however in females it can be partially dominant) where a region of the X chromosome is mutated. The incidence of Fragile X syndrome is statistically higher in males because they only have 1 X chromosome, and thus if their X chromosome is mutated they do not have another one to take on the duties. Females have 2, so when one is mutated the other may be able to function alone. Thus, some females with Fragile X appear normal, while others display symptoms, depending on which X chromosome was inactivated in the cells.

Thus, if the mother of this little girl is not a carrier of Fragile X, then it must have come from the donor. This is a condition that he will pass along to EVERY ONE of his female offspring (but none of the male offspring). Because of this, I think that something needs to be done to stop this from happening. If it takes a lawsuit to make these banks realize that they need to be doing more genetic screening on these donors (as most males with Fragile X disorder are display some of the symptoms - because they only have one X chromosome).

I think that this lawsuit should be less about it being a defective product, because that leads us to a slippery slope of what we're considering the children created through these procedures, and more about the genetic testing of donors. It should be the sperm bank's responsibility to test their donors like they do for STDs, so that nothing harmful is passed on to the offspring. And banks should immediately take a donor's samples off their shelves and remove him from donating, the second they hear word of a possible genetic condition being passed along.

This is the least these banks can do for all they do to harm the offspring. Take responsibility, don't try to hide from the fact it happened, or make lame-ass excuses as to why it may have happened or why this donor slipped through the cracks.

When NY state makes a law that puts donor conceived persons as products, there is no chance of any reform to be made. The government should be trying to de-commoditize us, not make us mere "products" that are under liability scrutiny.

I can picture the future of donor conception.....parents threatening their children that they'll send them back to the bank if they misbehave. This sounds eerily familiar to adoption where adoptive parents can un-adopt a child (also reminds me of that movie Problem Child!!). Is this seriously what our world is coming to?!?!

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.


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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.


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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.
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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!


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

Wednesday, October 21, 2009

The case for genetic testing and updated medical records

UPDATE:  I have downloaded the actual article from JAMA - it is currently only available to persons that have a subscription to the journal.  Please email me if you would like me to send you a copy.  Below is the abstract from JAMA's website:


Implications of Hypertrophic Cardiomyopathy Transmitted by Sperm Donation

Barry J. Maron, MDJohn R. Lesser, MDNelson B. Schiller, MDKevin M. Harris, MDColleen Brown, ScMHeidi L. Rehm, PhD 

JAMA. 2009;302(15):1681-1684.

ABSTRACT


Context  Sperm donation is an increasingly common practice for achieving pregnancy in the absence of a male partner or when fertility is problematic. The unintended consequence in which genetic diseases are unwittingly transmitted to offspring is an underrecognized public health issue not previously prioritized by US Food and Drug Administration guidelines.

Objective  To report the clinical circumstances and implication of hypertrophic cardiomyopathy (HCM) transmitted by sperm donation to recipients.

Setting  Voluntary sperm donation through a US Food and Drug Administration–approved tissue bank.

Main Outcome Measure  Incidence of genetically affected offspring and clinical outcomes to date.

Results  An asymptomatic 23-year-old man who had no personal knowledge of underlying heart disease and who underwent standard testing that was negative for infectious diseases, repeatedly donated sperm over a 2-year period (1990-1991). The donor was later shown to be affected (in 2005) by a novel β-myosin heavy-chain mutation that caused HCM, after an offspring wasclinically diagnosed with this disease. Of the 24 children known to be offspring of the donor, including 22 who were products of fertilization via sperm donation and 2 conceived by the donor's wife, a total of 9 genetically affected offspring, 2 to 16 years of age and 6 males, have been identified with HCM (2005-2009). Three of the 9 gene-positive children have currently expressed phenotypic evidence of HCM, including one who died at age 2 years due to progressive and unrelenting heart failure with marked hypertrophy, and also 2 survivors with extreme left ventricular hypertrophy at age 15 years. The latter 2 children and the donor are judged likely to be at increased risk for sudden death.

Conclusions  This case series underscores the potential risk for transmission of inherited cardiovascular diseases through voluntary sperm donation, a problem largely unappreciated by the medical community and agencies regulating tissue donation.Recommendations include improved screening guidelines for donors to exclude cardiovascular diseases (eg, HCM) such as consideration for 12-lead electrocardiograms.


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From the DonorSiblingRegistry blog:

Sperm Donor with Serious Genetic Issues- The need for genetic testing of donors.
From Today’s Journal of the American Medical Association:

“Implications of Hypertrophic Cardiomyopathy Transmitted by Sperm Donation” JAMA, 10/21/09, Vol. 302, Number 15, p. 1681-1704, including commentary

A donor who had no knowledge of of underlying heart disease, donated to a sperm bank over a 2 year period from 1990 to 1991. In 1995 he was diagnosed with HCM (a disease of the muscle of the heart in which a portion of the myocardium is hypertrophied (thickened) without any obvious cause. It is perhaps most famous as a leading cause of sudden cardiac death in young athletes. The occurrence of hypertrophic cardiomyopathy is a significant cause of sudden unexpected cardiac death in any age group and as a cause of disabling cardiac symptoms. - Wikipedia)  Nine of his twenty four (twenty two donor kids, two with his wife) children have been identified as having HCM (eight of the donor children and one of those produced with his wife).

One child died at age two due to heart failure, two others have extreme left ventricular hypertrophy at age 15 years and are judged to be likely to be at an increased risk for sudden death.

From the article:

“While the US Food and Drug Administration (FDA) inspects the operation of the banks and screening procedures for donors, this process has been directed primarily toward the prevention of infectious diseases, with little attention to the potential transmission of genetic diseases.”

“This case underscores the potential risk for transmission of inherited cardiovascular diseases through voluntary sperm donation, a problem largely unappreciated by the medical community and agencies regulating tissue donation.”  The article goes on to say, “We are aware of only one other documented instance in which a genetic disease was transmitted to an offspring by sperm donation”.

These are some of the medical and genetic issues that have been reported on the DSR: Autism, Aspergers, Von Wilberands (blood disease), MCAD (genetic disorder requiring both parents to be carriers), Type I Diabetes, Albinism, heart murmur, hypertrophic cardiomyopathy, Marfan’s Syndrome, PHACES Syndrome,  Dwane Syndrome, Kiddney Disease,  Hemoglobin D, Metabolic Genetic Disorder, Complex Congenital Heart Defect, Tourettes, Hypophosphatasia, Williams Syndrome, Mitral Valve Stenosis, CHD, VUR, PKU, Tay Sacks, Atrial Septal Defect,  HLH, Hypospadias, Karatosis Pilaris, Ebsteins Anolomy, ASD, Van Der Woude Syndrome, Seizure Disorder, Horseshoe Kidney, Imperforated Anus, Hole in Heart, Cyctic Fibrosis, Spinal Muscular Atrophy, Amniotic Band Syndrome, Polycystic Kidney Disease, Congenital Heart Disease, Hydrocephalus, Zellweger Syndrome, Leukemia, Renal Disease, Severe Congenital Neutropenia, JDM, and Bi-Polar Disease.

**************************
I think that a) the fact that the infertility industry is only owning up to a SINGLE case of a genetic defect/disease being inherited by a donor offspring is ridiculous and simply shows their sheer lack of concern for the children being created.  As Wendy has pointed out in the above paragraph, there are 47 different types of diseases (some more genetically-based than others) that have been reported on the DSR.  This is not counting the multitude of other diseases/disorders/defects that are NOT congenital and won't show up until the child is an adult or older, or perhaps will only appear in their children!!

It is time for the donor conception community to begin lobbying Washington and demanding these basic screenings as well demanding that donors are required to update their medical histories every x number of years, or upon discovering a condition in the future.  This does not deny them their anonymity, there is no way for the parents and offspring to trace him based on his medical history.  As for those who think that medical history should be kept private, then my response is these men and women should not be selling their sperm/eggs and their children and not take at least a shred of responsibility for their health and well being.

Saturday, October 10, 2009

Boston = an unfriendly place for donor offspring


A DISGUSTING editorial out of the Boston Globe today calls for STRICT ANONYMITY for donors!  This just makes me sick........



"Supreme Judicial Court Justice James McHugh, addressing the case of a mother seeking the identity of a sperm donor in order to obtain child support and genetic information, was right to call upon the Legislature to clarify these issues. The Legislature would be deeply remiss to allow a situation with such broad implications to be addressed through a patchwork of legal opinions. The state must act now to avoid uncertainty - and to preserve a fertility system that has worked well for the majority of those involved."

"Any legislation must use as its starting point the reasonable terms - including a strong ethos of anonymity - under which all the parties entered into their arrangements, while imposing new common-sense requirements that address complications that may never have been envisioned when sperm and egg donations first became possible. A fair system of laws would impose some restrictions on all parties to the donation process."

"Children born under this system will have a natural curiosity about their biological roots. For some, the curiosity could take on the force of an impassioned search for identity. But such quests emerge from many types of families, of all configurations, and often reach frustrating dead ends. While recognizing the desires of children to know all aspects of their backgrounds, the state should nonetheless ensure that the identities of sperm or egg donors remain such a dead end. A breach in the wall of privacy under any but the most dire circumstances could jeopardize the whole fertility system. The greater good is clearly in encouraging the participation of informed donors and preserving their anonymity."

"Fertility advances have served to strengthen the bonds of parenthood and to extend the joy of family life. Anonymous donations have made many advances possible, and Massachusetts must do all it can to bolster a successful system. The happiness of thousands of families, and perhaps millions of children yet to be conceived, depend on it."

Honestly, the fact that they acknowledge the idea of identity and the child's need for that knowledge, they completely disregard everything by stating that "the state should nonetheless ENSURE that the identities of sperm and egg donors remain such a dead end" and that this is for the GREATER GOOD!!!!  Whose greater good?!?!?!  The infertility industry's.  This article is such a bunch of BS that I simply can't take it anymore.  With articles like this - who needs enemies.....

I think I am going to carry on BB Church's legacy of "Bad-Binky Awards" and award one to the Boston Globe for publishing such infertility industry lobbying crap that it offends not only donor conceived adults, but also adoptees, recipient parents who have done the right thing and chosen an open donor, and for the donors out there who have the heart and mind to open their arms to their biological children they helped create.

Tuesday, October 6, 2009

Comment of former sperm donor sparks outrage


In response to the article in yesterday's Boston Herald, "Jane Doe spells out daddy issues" over 200 people have commented on the article (as of this posting).


For those not familiar with Jane Doe's litigation, she is a single mother of twin girls, conceived by Donor D237 of New England Cryogenic Center (NECC) in 2000. Her daughters were born with potentially fatal health concerns and have had expensive and intensive medical treatments since their birth. It's been assumed that the girls inherited the conditions from their biological father, D237.

Jane Doe is filing a lawsuit in the state of Massachusetts for donor D237's medical records and his identity for her young daughters. She argues that NECC had informed her that donor D237 was willing to contact her daughters if she wanted a relationship. Now NECC is claiming that such statements were never said and that the donor is assured full confidentiality, including his medical records.

After the Boston Herald reported her lawsuit she sent the Boston Herald her response about her desperate attempt to provide some comfort for her little girls.

Most of the responses are hostile towards Doe and are from the obviously ignorant and uninformed masses of America. One poster in particular (thank you Karen for enlightening me to this) is a former donor from an unspecified bank.

TO RECIPIENT PARENTS AND THOSE TRYING TO CONCEIVE....BEWARE!!!!

These donors do NOT care about your children, or their health and well-being. The idea of an altruistic donor is a load of bullshit --- a donor who donated to "help" infertile couples would be concerned about the health of the children he creates, even if he wants to remain anonymous. Any donor who refuses to provide updated medical information is NOT an altruistic donor, and is NOT the kind of donor you want to create your children with!!!

Here are a few snippets of the comments of this anonymous donor:


"I was a donor for several years and according to a certain website I have more than ten offspring. (I'm not saying how many more) A couple of years ago I found out that I have a slow onset incurable disease that half of my offspring will inherit. I did consider telling the sperm bank but my wife was unhappy babout me doing so since the disease is quite rare and she was worried that our identity might be disclosed from our involvement in support groups."


"Although I am not happy that I may have passed down this disease to my offspring, I don't feel any responsibility for it. Overall I believe that my privacy is more important than notifying families that conceived through me and the law recognizes that with my privacy being constitutionally protected."


"My wife and I are also going through the stress of considering what to do about starting our own family. We want to ensure that any children we have are not affected by the disease. Ironically enough our doctor suggested using donor sperm. You couldn't imagine our response to that. We both said NO simultaneously."


"I do not feel that my offspring are my children. They share some of my genetic code, and some also share the disease bit of my genetic code, but that does not make them my children. Their parents are the ones raising them and the only ones responsible for them both financially and medically."


"I want to ensure that any child of MINE is healthy and that is why my wife and I are going to do pre-implantation diagnosis which is a very expensive form of IVF and not covered by insurance to ensure OUR children can be born disease free."



I am completely and uttlerly outraged by this donors comments, and if anything I think this PROVES why anonymity needs to be abolished!! If these men can donor sperm and cause so much pain to their BIOLOGICAL CHILDREN and to the families that they wanted to HELP, then the system as it currently stands is doomed.

Also remember that most donors are college students who need extra money. Having been a college student myself I know the mindset of 18-22 year old males. It's irresponsible and self-serving. They will LIE, CHEAT, and STEAL their way to making a quick buck --- especially if it involves something they enjoy! And lets face it, I couldn't find a single college guy who wouldn't want to get paid to jack off.

There are supposed regulations on donors, but they don't care. So long as they pass through the minimal tests for things like HIV, Tay Sachs, and a handful of others, and have a high sperm count, they are scotch free. They could care less if all the women in their family had breast cancer, or that all the men died at age 40 of heart attacks. If they're smart and want the money they will not reveal that information.

If an anonymous donor feels the way the above-mentioned one feels, and he publicly announces his cruel intentions, there are hundreds and possibly even thousands of others out there that are keeping their traps shut.

It is the behavior of this donor that will inevitably bring the end of anonymity in the US. Recipient parents and those TTC will not have it any other way. Yes, the sperm banks could care less. They want as many donors as they can get so they can make more money. They don't care about the children they are creating either. But the donors should care, at least enough to provide their biological children they sold the opportunity to know in advance of incurable inherited diseases that may strike them or their own children later.

If you are a recipient parent or are trying to conceive, this could potentially be YOUR DONOR, and your children could potentially be carrying the genes for fatal disease, and you won't even know what hit you until they are DEAD. Please speak up against this happening to more children!!! Talk to your congressmen, go to the media....support Jane Doe's fight for access to her donor's medical records, and his identity for the sake of her ill children --- not just for her children, but for all donor conceived children across the United States and the world! Do it for your own children!!

To this ignorant self-inflated egotistical former donor....

First off, if you think you're so macho that you can prance around insulting everyone and talking about your irresponsible escapades - YOU ARE NOT.  You're a coward, a creep, and a discredit to males everywhere.  Not only do you bring this up in a PUBLIC FORUM (OH, of course I forgot, you think you're the greatest thing ever) but you have the NERVE to say that you are going to do an EXPENSIVE repro-tech procedure so that YOU and your wife can have your precious little genetically-related monsters while your own biological children you sold away are going to suffer from whatever disease you have that you aren't man enough to fess up to.  Kudos to you for being so rich to afford PGD that's *shock* NOT covered by your insurance!!!

You make me sick, and I hope that one day your biological children will trace you (sorry charlie, but anonymity ain't gonna be around much longer with advances in technology and science.....) and haunt you down and make you pay for your actions and non-actions.  

Oh, and good day to you.....jerk.

Sunday, October 4, 2009

Another new donor-conceived blogger!!

Shawn Vandor is 23-year-old donor-conceived man from Portland, Oregon.  His blog "It's Shawn Vandor's Blog Wow!" discusses donor conception, among other things.  He is a writer and a musician and a memoir of being donor conceived is in the works.

His interest in bioethics provides an interesting and educated response to the issues of ART and donor conception.  One post in particular is "The Birth of American Donor Insemination: A Modern Techno-Myth" describes the story of the first DI procedure in America and how the unethical behaviors of the doctor in 1884 has led the way for the American Medical Association (AMA) and the American Association of Reproductive Medicine (AARM) to continually legitimize and advocate anonymous donors and secrecy.

Here are some interesting excerpts: 

"I suspect the identity of the “true” biological father was kept secret for three reasons: 1) It was initially kept secret from both the husband and wife to protect Dr. Pancoast and his students from recriminations in case the merchant and/or his wife found their decision to inseminate her to be dishonorable or criminal; 2) The husband wanted to protect his wife from the potential shame of knowing she’d been inseminated, unknowingly, while passed out, by an anonymous man and; 3) Not wishing to lose face in his wife’s eyes the husband did not want his wife to know that he was incapable of impregnating her. In any case, the chief motivating factor in maintaining donor anonymity in this first ever use of human DI in the U.S. was - unambiguously – fear; each actor in the scenario was afraid that what they had done might be perceived as wrong and sought to protect themselves from wrongdoing by cloaking themselves in secrecy."
"In the absence of any federal or state legislation since 1884, the decisions made by Dr. Pancoast and his six anonymous students have, remarkably, set the standards for a medical practice that has become increasingly common and even, in the past few decades, highly commodified."
And my personal favorite:
Celebrating 125 years of Donor Insemination!
Creating Life and Avoiding Responsibility!

Please check Shawn's blog out!  I can't wait to  read his memoir when it is released.

Saturday, September 26, 2009

Journey into the Bubble
















A new blog from a UK donor conceived woman, Alison Davenport, called Journey into the Bubble, chronicles Alison's late-discovery of being donor conceived after learning she has "odd DNA" when she needed a bone marrow transplant.  

Her story is both heartbreaking and intriguing as she speaks out for the cause of identifying donors, and of the danger of genetic disease and how it can be even more difficult for those of unknown parentage.  

I meant to point her blog out several months ago (and maybe I did, I honestly cannot remember at this point!!) but even if I did I want to reiterate Journey into the Bubble as a highly recommended read for ANYONE thinking of using a donor, for recipient parents, and for donor conceived adults.

Friday, September 25, 2009

Embryo mixup woman gives birth


On my CNN reader this evening an article (Woman in embryo mix-up gives birth to baby boy) about the family from Sylvania, Ohio that had an IVF mixup and the wrong embryo was implanted into Carolyn Savage gave birth to a healthy baby boy today.  This baby has absolutely no genetic condition to either Carolyn or her husband.  Carolyn was, due to negligence of the clinic, an involuntary gestational surrogate!  While I'm sure they could have aborted the baby that was not theirs, they chose to carry him to term and relinquish him to his biological parents.

I think what this couple did was an amazing act of generosity, receiving none of the benefits that surrogates receive, and going into the procedure expecting to have a new baby of their own in 9 months (they already had 3 children).  I can only imagine what a painful experience this must have been, for both the Savages, the biological parents, but also for this poor little boy, who became attached to a woman while in the womb and is now tore away from her, even if he is going to his biological mother.

It makes me think of the legal ramifications of this mixup, and the subsequent outcome.  First of all, US law states that the legal parents of a child are determined by who gives birth -- the LEGAL mother is the gestational mother as she gave birth to him, and her husband is the legal father because he is married to her.  This is the beauty of donor conception - the "parents" are on the birth certificate as the legal and biological parents because the legal system allows them to deceive.  

However, nowhere in the article does it state that the Savages were listed as the biological parents on the boy's birth certificate, or that his biological parents had to legally adopt him.  The article says relinquish, but that does not mean that legally the child was not theirs at first.  I would think that if the average American learned that the couple that was this baby's biological parents had to ADOPT him, they would be outraged!!  Sure, it seems like it's such a perfect little system when we're dealing with embryos who were supposed to be put in another person's body, but all of the sudden when it's a boo-boo on a clinic's part, it's this terrible situation!

The interesting part is that there was no possibility for the Savages to even keep the little baby, even though according to US law they ARE the parents!!  This story definitely turns the whole legal aspect of ART on its side.

Thursday, September 24, 2009

Long lost siblings reunite with missing sister


I saw this on the TODAY show and now I hear that they did in fact find the second half-sister!!  This adoption reunion story is just too amazing to not post here.  Brothers worked together for several months before realizing they were brothers.  Their half-sister's fiance sees them on a local station in Maine, tells his fiancee that he saw her brothers and she goes to the furniture store they worked at and they reunite.  And now.....while the three were on the TODAY Show their other half-sister in Florida saw them and all four are now reunited!  It turned out that the two girls actually went to school with each other, and the one was told not to tell the other they were sisters.  Now they are all reunited as family.  A beautiful story, but at the same time heartbreaking that these four lost their childhoods and early adulthoods knowing and growing up with each other.


TODAY Show
September 23rd

Monday, September 21, 2009

Lots of updates in the DC community

Hello everyone!!  I'm terribly sorry for being so absent the past few months.  Life has been really hectic around here.....my last semester of graduate school is underway, I'm still nannying for my lil boy, and I have 3 other regular babysitting jobs (one on Wednesday evenings for 15 kids!!!!).  I've also been doing my practicum at CWRU's Cleveland Health Sciences Library, which has been going well and I'm learning a lot!!  

Needless to say, I've been somewhat negligent on my postings here.  I will try to post several times a month, but as always I can't promise it for sure!

So.......lots has been happening in the world of donor conception!!  I only have time to touch on a few things here.

Mainly, a law professor named Julie Shapiro has had a lot to say about donor conceived persons fight against anonymity, and in particular the term "donor".  She does not understand how such a term is offensive to DC adults.  Please see her blog here.  The post Anonymous Donors And What To Do About Them has sparked an incredible debate and discussion, and she has followed up with several other posts with regards to this first one.  Adoptees and DC adults PLEASE voice your opinions!!!  This is probably the most important comment Julie makes:
What I don't quite understand is why it follows that the label "donor" is unacceptable.  But accepting that it is, would "progenitor" or "forebear" (if that's how you spell it) be better?  I would be content with either of those.
If neither of those work does it have to include the word "father" and if so, why?
This begins an entire debate on the legal versus social definitions in donor conception, and how these definitions, whether we like it or not, are what is keeping us from our goals.  What is the definition of a parent, of marriage, of father and mother.  And it's not only the literal definitions, but how these definitions are defined and refined by different interests.


This is all I have time to update on right now, but please go to Julie Shapiro's blog and post comments!!

Sunday, August 2, 2009

Seeking USA offspring for study on searching

Just realized it's August and I've been very bad and updating here!!  Not that my lack of posts should be excused, but between school and working now 3 JOBS I'm a very busy girl!!!

Finished summer classes...thank god!!  Still working at the library....hours cut drastically, boo!!  Got a job as a nanny for a 3 month old baby....good pay, cute kid, tough job!!  AND I've started interning at Case Western's Medical School library.....still looking for that single medical student;o)

So yes, that's been my life lately!!  I will try to update soon on the world of donor conception.  

In the meantime, an American graduate student and DC offspring is looking for USA donor offspring for her dissertation study on searching mechanisms of donor conceived for their donor and/or siblings.  Please email me for more information!!  

Here's a brief synopsis:

I am conducting research about the search experience of sperm donor offspring who search for information about their donor and/or genetic origins. Currently, there is little research available about the search experience of populations to which the search process is deeply meaningful and can have a lifelong impact. In addition, there is even less research available about the characteristics of a sperm donor offspring search for genetic information. It is expected that findings from this study will inform the information science community about the nature of deeply meaningful search as well as all individuals involved with donor insemination. 

As many members of the listserv are sperm donor offspring, I hope that some of you will considering being interviewed for my study. To qualify for the study, you must be a donor offspring in the United States who is currently residing in the United States and has conducted a search or are currently conducting a search for information about your donor and/or your genetic origins and are 18 years of age or older. If you volunteer for the study, I will correspond with you over email and ask you a few screening questions in order to obtain a representative sample. If you move forward from there I will send you more detailed information about the study and if you agree, we will schedule a time for the 60 minute phone interview; you will not incur any charges from calling me. With your permission, the interview will be audiorecorded. My goal is to interview 10-20 sperm donor offspring who have searched for information about their genetic origins and that have been searching for different lengths of time. Know that I am also a donor offspring and understand the sensitive nature of this information for some people. I believe that what I learn from this research can assist other donor offspring as they search for information about their genetic heritage and/or their donor. As a thank you for participating, you will receive a $10 amazon.com giftcard.

Wednesday, July 1, 2009

Blogosphere orphans

[Update: Oops!! This post accidentally got published without a title....so I've republished it]

So after reading an interesting post on Jenna's "Chronicles of Munchkin Land" yesterday about how as a birthmother she doesn't fit in with the mommy-bloggers but rather finds a safer home with the adoptees themselves - I realized that as donor-conceived adults and former donors we are in much the same boat.

Aside from a few heaven-sent recipient parents (you know who you are...) that actually "get it", most are ignorant if not spiteful toward those of adult offspring (and donors!) that are speaking out. Some wanna-be parents are trying to educate themselves, but the few that brave the potential criticisms are only a tiny spec of those using repro-tech to procure their children. I'm sure as hell that Sarah Jessica Parker did NOT look into how her engineered surrogate daughters may feel when they grow up, and Michael Jackson obviously did not think of it a decade ago.

Now, I understand that a decision that they made how many years ago may be being questioned, but as the parents, shouldn't they want what's best for their children - even if that may put them in a vulnerable place?!

So back to Jenna, and back to us. Why is it that the voices of those which whom create these miracle children (the birth-parents and the donors) as well as the children themselves end up pooled together in a world where our voices don't matter.

The majority of adopted parents and recipient parents (and infertility patients) have their fantasy and no one - and I mean NO ONE - is going to ruin it!! It's just so much easier to think that babies are always going to be cute and cuddly and complacent about their lives, and that birthmothers are always good-for-nothing individuals who would be bad parents and that's why the a-parents must step up and "save" their children, and that donors are just happy to jack off in a cup and get paid and want to "help infertile families". If someone tries to ruin that fantasy, well, they just won't have that!! It's their world, and just as they got the baby they wanted they get everything they want.

A world where donor-conceived and adoptees aren't happy?!? A world where birthmothers are good and stable loving human beings?! A world where donors may actually want to know about the children they created?! OMG!!! That just cannot be!!!

We're all adults here, but apparently due to the fact that adoptees and donor-conceived persons lack knowledge of their own genetic heritage and birthparents must be druggies and homeless and donors are poor frat boys that need beer money...........THIS MUST BE WHY WE'RE SECOND CLASS CITIZENS!!!

YES! So I have solved the puzzle - it has nothing to do with the fact that we have lost an inalienable right to know our biological families or that we are ripping at the sides of an established baby-making/marketing business and thus are a threat to human-kind.....it's because we're bastards and homeless druggies and frat boys.

Tuesday, June 30, 2009

A letter to Prince Michael, Paris, and "Blanket" Jackson

By now you have probably heard all the major media outlets advertising that your dad is not your biological father, and that your mom is not your biological mother.  I can only imagine how hard this must be, just days after your dad tragically died.

I am so sorry that you had to find out the truth this way, it's a cruel thing to do to a child - hide the truth about your identity and let strangers reveal it maliciously  to you.  Parents sometimes make these decisions (to keep a secret) thinking they are protecting their children.  However, usually it backfires.  Unfortunately, because of who your daddy was, this backfire has been made public and the entire world is watching you.  It's not fair, but make the best out of a bad situation.

But don't feel alone.  There are thousands (maybe millions) of kids out there just like you - conceived artificially and denied the right to EVER know who their biological parents are.  You three can change this!!  Stories are flying around that your dad's dermatologist is your biological father.  If this is true, you deserve to know, to know him - as your father.  Ask questions, demand answers!  Not only can you find answers for yourself, you can help thousands of other kids and adults out there who were conceived the same way!

Your daddy will always be your daddy, nobody can take that away - and it will take time to mourn his passing.  But you also have a biological father out there, and you carry half his genes.  His is part of you - he even looks like you!  While nothing can mask the loss of your daddy, I hope that your biological father will step up and give you guidance and love, and support through this rough time and as you grow up.  You deserve that as children and as human beings.  
You also deserve to know your biological mother, and I hope for your sake that she stands up and acknowledges herself to you and provides love and support.  A child needs both a mom and a dad, and to have only one and lose him is tragic but to be denied the ability to know both biological parents is horrific.

If you ever come across this, in a few weeks, a few months, even a few years - please know that you're not alone and that there are many others out there pleading for these same rights...and that one day we will prevail.

Monday, June 29, 2009

End of Anonymity: Is just knowing a name enough? (Re: Michael Jackson's children)

Right now I'm taking two summer courses for grad school and I'm starting my own business doing genealogical research (send me a message if you would like more information!) so my major writing here has been put on the back-burner until mid-July.

In the meantime, a donor-conceived friend of mine wrote this on her blog "Donorconceived" several days ago, I wanted to share it because it is such a powerful message.

"I cannot believe that Michael Jackson is dead. I'm still in shock. While he was alive there has been little media coverage on his children. They were always covered by either masks or veils and the public was left to wonder, do they look like their father? Who is their mother?



My parents used an anonymous 'sperm donor' to conceive me back in the mid 1960's and I've been involved in advocating for the identity rights of those conceived from the same method of conception as myself for the past 5-6 years. I and others, want to see an end to anonymous 'sperm/egg donations/vending' and 'traditional surrogacy'.



Since Michael Jackson's passing, if you Google search "sperm donor" you will find numerous articles on the nature of his children's conception. Did Michael Jackson use a 'sperm donor' and/or 'egg donor' and/or 'surrogate' to bring his children into the world?



I haven't seen pictures of his children until just recently and I have to say, they don't look much like their dad. Regardless, Michael Jackson was their dad. No one is perfect and I haven't ever spoken with his children but I'd bet that they adored him regardless of their biological/non- biological relationship with him. No doubt, they are in profound mourning and will require years to come to full (if ever) acceptance of their loss.



I do wonder though if they feel as confused over their 'donor/surrogate' conception as I and many other 'donor' conceived feel? Do they wonder who their genetic father/ mother/ grandparents/ siblings/ cousins/ ancestry/ heritage are? Do they feel a loss?



Now that their dad is gone, will they feel more open to explore what their 'donor' conception/surrogac y means to them? Will it take having children of their own to fully explore their feelings and how it relates to their own children to search for more information?



I advocate for the end of anonymity in relation to 'sperm/egg' donation/vending and surrogacy, but I also do not think that just knowing a name is enough. I believe everyone does have a responsibility for their own sperm/egg when combined to create a new (out of the womb) life (including 'sperm/egg donors' and 'surrogates' ) that includes more than just identity disclosure â€" and nothing less than open doors and open hearts.



Michael Jackson's children are not abandoned by any means but are they genetic orphans? I hope not. No doubt, there are many people willing to be involved and supportive in their lives but is that enough? I hope and pray that their genetic father/mother/ grandparents and extended family have also kept their doors wide open to these children. Love might make a family but we can't just write off genetics and the importance of genetic/biological family. They all matter."

Friday, June 26, 2009

Canadian Donor Conception Coalition Launches Website and Fundraising Campaign to Support First Ever Lawsuit




Canadian Donor Conception Coalition Launches Website and Fundraising Campaign to Support First Ever Lawsuit
Thursday, June 25th, 2009


[6/26 - 11:30pm ~ The above link was fixed ---- sorry for any inconvenience!!]

Today marks the start of an initiative to fundraise for the first ever lawsuit filed by sperm and egg donor offspring in Canada. The lawsuit was filed by Olivia Pratten on October 28, 2008, and will directly benefit all people in the province of British Columbia conceived via anonymous sperm, egg and embryo donation, or what is called "gamete donation". Details of the suit can be read here.



Under provincial laws currently in effect, persons conceived by way of gamete donation - unlike adopted people - are denied access to information about their medical, genetic and social histories. The legislature's failure to extend the legislative regime with respect to creation, storage and accessing of records unfairly discriminates against them contrary to their equality rights as guaranteed under s.15 of the Canadian Charter of Rights and Freedoms. The lawsuit also seeks to establish for all persons conceived by gamete donation their fundamental right to have an opportunity to know the most basic information about themselves, which is guaranteed by the right to liberty and security of the person in section 7 of the Charter.



The lawsuit has national implications as the situation in British Columbia is similar in all other provinces and territories and the Charter applies to everyone in Canada.


A lobby group called Canadian Donor Conception Coalition (CDCC) has formed in support of the lawsuit. The CDCC is an organization comprised of donor conceived offspring, parents, health care professionals, gamete donors and other interested persons. With the launch of their website, the CDCC hopes to raise awareness of the legal and ethical issues surrounding assisted human reproduction and to raise money to cover the significant legal costs of the lawsuit. 



All media enquiries and requests for interviews should be directed to Olivia Pratten at 416-655-1452. For other information, please contact Joseph Arvay Q.C., who is counsel for Ms. Pratten. 


Thursday, June 25, 2009

Ohio libraries are in jeopardy!!

Governor Ted Strickland wants to cut state funding to Ohio public libraries by 50%!!  With 70% of Ohio libraries relying SOLELY on state funding, many libraries will have to close, or drastically cut their hours and staff.  

Please contact Governor Strickland (Tel: 614-466-3555 or 614-644-4357) and your local Representatives and State Senator about this appalling decision before July 1st!!


***********************

Why are Ohio libraries in trouble? [From Ohio Library Council]

At a news conference on Friday, June 19, the Governor proposed a cut to state funding for public libraries of $227.3 million in fiscal years 2010 and 2011 as part of his plan to fill the $3.2 billion gap in the budget that must be balanced by the Ohio General Assembly's Conference Committee by June 30.The proposal amounts to a 30% cut in funding for Ohio's public libraries. This cut is in addition to the 20% reduction in funding that libraries are already facing, because their funding comes from 2.22% of the state's declining General Revenue Fund.

Libraries could close or face significant reductions in operations as a result of the Governor's proposal. With some 70% of the state's 251 public libraries relying solely on state funding to fund their operations, the reduction in funding will mean that many will close branches or drastically reduce hours and services.

The Governor's proposed funding cuts come at a time when Ohio's public libraries are experiencing unprecedented increases in demands for services.  In every community throughout the state, Ohioans are turning to their public library for free high speed Internet access and help with employment searches, children and teens are beginning summer reading programs, and people of all ages are turning to the library as a lifeline during these difficult economic times.  Ohio's public libraries offer CRITICAL services to those looking for jobs and operating small businesses.  Public libraries are an integral part of education, which Governor Strickland says is critical to the state's economic recovery.  But it is unlikely that many of Ohio's public library systems, especially those without local levies, can remain open with these proposed cuts.

About 30% of Ohio's public libraries have local property tax levies that supplement the state's funding.  However, with the Governor's proposed drastic cuts in the state funding for libraries, even those libraries will face decisions regarding substantial reductions in hours of operation, materials, and staffing.

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To learn more about Ohio's library crisis and to help save Ohio libraries please visit these sites:

Facebook - Save Ohio Libraries (25,928 members as of 5:05pm)
Use Twitter hashtag #saveohiolibraries
@Ted_Strickland on Twitter


Thursday, June 18, 2009

Another new blog! This time an offspring...

Check out Offspringgirl's blog.  A newly discovered donor-conceived adult talking about the journey to find her biological father.

In an instant my life changed. Poof, just like that. All I had thought and known changed. This was the day I was told that my Dad was biologically not my Dad. Strange, or was it? Certainly there were differences I noticed growing up and even inquired about, but now in my 40's had let go of the notion. But, it was true. In the wake of tragedy, a family death, the truth was told. As shocking as this was, it was also an "ah ha" moment. I was the offspring of a sperm donor. A med student sperm donor, a different religion than the one I had been brought up in. Who is he? The seach begins.

Wednesday, June 17, 2009

New blog by former donor

[Update 6/19/2009] Mike has moved his blog Donor 67 to his personal website:
Please update any bookmarks




Donor 67 (aka Michael Galinsky) has started a new blog.  Below is his first post from today....an op-ed he wrote about a film he is beginning to work on [he's a filmmaker].  About being a sperm donor, a father....both.  He is one a growing number of former sperm donors who are starting to acknowledge the ramifications of their donations and want to become known to their children they created in a laboratory.

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Are You My Father?

Stems cell research, in-vitro fertilization, egg and sperm donations, and the ethical implications that surround them have been all over the news recently. These are thorny issues and as a filmmaker I am compelled to throw myself and my story into the debate. 

Before I made films I played bass guitar in a rock band. To support myself I worked as a messenger for a commercial production house, and a couple of times a week I donated sperm. While on my way uptown to deliver videotapes to the edit house I'd sometimes stop by the sperm bank to make a deposit. 50 bucks might not sound like a lot of money, but it was almost as much as I made for a full day of work as a messenger. My rent was only $150 a month, so between a few days of working as a messenger and 4-6 donations a month, I had enough money to live and enough time to focus on music, photography, and writing.

Despite the fact that I was a religious studies major in college I didn't think too deeply about the ethical or long term implications of my second job. I also didn't keep my work a secret. In fact when people asked me what I did for a living I'd say, "I'm a sperm donor". They either laughed or recoiled in horror. Invariably I would get along well with those who laughed or were intrigued; it was kind of a litmus test.

All humor aside, when I started donating I had the sense that the sperm donor was a pretty unimportant part of the equation. I'd read or seen many sob stories about adopted children searching for their birth mother, but I had never seen anything written about the search for a birth father, let alone a donor father. I donated on and off for probably a couple of years when I wasn't on tour with my band. When I started to date my future wife in a serious way I simply stopped going to the lab. I didn't think about it too much after that.

We got married and after several years my wife and I had a red haired, wild eyed, explosively charismatic daughter. I spent a lot of time with her and was fascinated by the reality of watching her become who she is. There were things about my daughter that simply couldn't have been formed or changed by my parenting style, skills, or lack of thereof. She was who she was when she was born, and she was a lot more me than her mom.

When my wife was 6 months pregnant with our second daughter my father was struck by a car and killed instantly. I was very close to my father which made it a gut-wrenchingly painful experience. While we had our conflicts we also had good communication and as such I didn't feel like we had unfinished business to deal with despite the fact that he was snatched from us so violently. I was pleased that my older daughter had gotten to know him because both of my grandfathers had passed away before I was born and I had the sense that I had missed out on something by never meeting them. Even though she was just shy of 4 years old when he passed away I believe that knowing him had a powerful effect on her life. I have a picture of her on his lap being read to that is, for lack of a better word, precious.

My father handled almost everything in my family and I fell into his leadership role in arranging the funeral. Although hastily put together, it brought many of my relatives together from all over the country. Some of my cousins came that I hadn't talked to in over a decade, yet I felt deeply connected to them. Over 100 people crowded into our house for an impromptu afternoon of remembrance. As I spoke to this group about my father I wore his shirt, which was too small and his watch that didn't work, because I needed to feel connected to him. The room was filled with people who had felt connected to him, and I in turn felt connected to them.

Three months after my father passed away we had our new baby girl. Within weeks I could tell that she took after my wife, and not just in the way that she looked, but in her calm and observant presence. My older daughter shares a hyper energy with myself and my mother, while our younger daughter has a quiet reserved nature like my wife and her maternal grandfather.

It is one thing to understand that there are parts of us that are shaped by nature and parts that are shaped by nurture. It is another thing completely to have two small children and witness how powerfully nature wields it's brush.

When our little one was a couple of months old I was showing her off at the hair salon on the corner. After cooing over her for a few minutes my friend Lois eyed me fiercely and harumphed, "Mike, now you gotta go for your boy."

"Hell no. I'm finished. I can't handle the two I have." I shot back.
"Mike you gotta have a boy." she drawled as she went back to washing her clients hair.

As I left the salon I was struck by the thought that I must have a boy somewhere, probably a lot of boys and a bunch more girls to boot. I stood holding my baby with one hand while trying to contain my older daughter's manic energy with the other and I was dumbfounded by the reality of the situation. Some of them might be 18 years old I realized, and they probably want, even need, to know who I am.