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"

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, MD; John R. Lesser, MD; Nelson B. Schiller, MD; Kevin M. Harris, MD; Colleen Brown, ScM; Heidi 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.

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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.

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........

For sperm-bank era, courts need clearer rules - October 11, 2009

"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.

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.

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.