So I blogged earlier this month about Damian and I having some "technical difficulties" with the DNA database. I'm going to do my best to explain the situation - and heck, maybe someone out there in the near-infinite WWW will see it and be able to give us some direction!
Background:
Damian and I started this DNA database project last fall after I was presented with the possibility of finding a half-sibling. Based on previous DNA tests that we had both taken we shared our paternal allele on 10 of 15 CODIS markers. Of course with this knowledge I HAD to know what it meant and if it was significant! We both set out researching, and low-and-behold, Damian and I were able to successfully determine the algorithms and equations used by professional DNA testing companies to determine Siblingship/Relationship Indices (also called the likelihood ratio) and discovered that the results were around 99% probability that we were in fact half-sisters. When the professional results came back they were right on par with what Damian and I had projected, which gave us further evidence that our algorithms were correct.
We decided that having this knowledge could be very beneficial for other offspring, and we had hoped that there was a database similar to the UKDonorLink available worldwide for donor-conceived adults to find siblings. So we launched our project and found another DC-adult to help us with the database framework and coding.
Database Philosophy:
We wanted a database that offspring around the world could upload their previously done DNA tests (paternity, siblingship, DNA Profiles) and be provided with a list of potential siblings, similar to databases like Y-Search that provide potential relatives for individuals who have done a Y-DNA test. Many offspring do numerous, some even dozens, of DNA tests in their quest to find their kin and we wanted a central location for finding donor-conceived siblings that would alleviate the needless costs involved in doing multiple DNA tests without prior reason. Offspring would be given a list of other offspring in descending %probability of relatedness order, with each offspring's "vital stats" such as year and place of conception, doctor/clinic/sperm bank, donor number, etc, as well as their contact information. Therefore, it would be each offspring's individual decision to contact potential siblings and determine if there was a possibility of relatedness and then go forward with professional testing.
And...Problems Arise:
We always knew that siblingship results are best and most accurate/conclusive when both alleged siblings mothers were also tested. Unfortunately, for many older offspring this is not feasible. So Damian and I had the idea to set a threshold that was low enough that for offspring without their mother's DNA. We even had an idea of setting two separate thresholds, one for offspring who had their mother's DNA and one for without. We also felt that there was some serious concern with UKDL and their setting a threshold of 99% probability. In the USA, siblingship DNA tests are admissible and conclusive in court at 90% probability. So why the high threshold for the UKDL?! We originally thought it simply had to do with government officials not wanting to deal with it so by setting the threshold so high they'd have less matches to contact.
However, as we began adding DNA samples into our database things took an interesting turn. We were getting a ridiculous number of false positives. Not false negatives, as we originally suspected, especially with offspring without mom's DNA. We were getting results that were well over the 1.0 threshold that is the dividing line between not related and possible relatedness, and in several cases results that were well into the conclusive range. With individuals that could in no way be related, at least at such a close degree of consanguinity.
Evidence against CODIS:
Damian and I were becoming increasingly worried about some of the results we were getting from our simulations, and finally our CS/IT guy jumped ship because he finally put together what we were already concerned about. That the algorithms that we were using were not working. But the question remained....if they did not work in our database, and we knew that they were the same algorithms being used by professional testing companies (as we were routinely getting near-identical results when recreating previously done tests), does this mean that professional DNA testing companies could be producing false positive results as well?!
Both Damian and I have noticed some intriguing circumstances that show that CODIS has some serious flaws. For example, I added my 15-marker CODIS results to this database called DNA Reunions. It's a free database that you can join and upload CODIS markers, as well as Y-DNA and mt-DNA results and be matched with "potential" relatives. Since I have not done an mt-DNA test, as it's not helpful for tracing my paternal line, and I am genetically unable to do a Y-DNA test, I only submitted my CODIS markers. They also did not ask for any relative's results, so I was no able to add my mother's. Then again, it would not really be necessary for this type of database that caters to solely to genealogy. Several months later when my results were approved and I was actually in their database, I checked it out and noticed that there were 3 other individuals on this database that shared at least one allele on ALL 15 of my CODIS markers!! And there was NO WAY that any of these three individuals were related to me at all, at least not in the close proximity that CODIS markers can assess. So that means, if one of those three individuals turned out to be donor-conceived and I went through a siblingship DNA test with them, it would come back highly significant. Especially if neither of our mothers were tested. And yet, it's not possible. But I still shared such a significant portion of CODIS markers with them.......
So is it CODIS? Is it the testing criteria? Or is it donor-conceived adults? What is the problem here?!
Lindsay's Theory:
My theory is this...donor-conceived people do not follow what is considered the "norm" for individuals who seek DNA testing. In traditional cases two individuals have prior reason to believe that they are related/half-siblings. Usually it involves infidelity and/or multiple partners. However, in both of these cases the said individuals did not just find each other at their local supermarket and say, hey we might have the same father!! With donor conception, in contrast, it's even more random than the local supermarket!! We might find someone who lives and was conceived 2,000 miles away from us on some message board and the vague descriptions we both have of our biological father was that he had brown hair, was 6'0 tall, and was a medical student in 1984. That description could accurately be applied to thousands of men. Yet, as donor-conceived adults, we see beyond that. We see the possibilities. And in our world, even the tiniest of possibilities could be significant and need to be further pursued.
This means that what we consider a potential sibling does not fit the "norm" of individuals who are normally tested for siblingship and may be too random to be accurately determined through current protocol.
Possibilities...but not necessarily probabilities:
At the same time, professional DNA testing companies, and the algorithms that we are using are based on a 50% prior probability. The statistics behind this are the likelihood ratio test, which basically states that there are two potential outcomes, the "null" and the "alternative". The "null", as in null hypothesis means there is no relationship between the two datasets (for DNA tests it would be the two individuals CODIS markers). The "alternative" is the opposite hypothesis. It means that there is a relationship between the two datasets. So, there are two possible outcomes. For any two random samples there is a 50% probability either way, before the test is done (hence "prior"). Either the results support relatedness or they do not support relatedness. There are only two outcomes. Positive and negative.
This also means that 50% probability is that threshold between related and non-related....at least statistically. As probability gets farther below 50% it means there is less likelihood of relatedness. On the converse, as that probability increases beyond 50% it increases the likelihood of relatedness exponentially.
Back to the SNAFU:
So the bottom line is that Damian and I have unearthed a serious problem. This problem I fear much farther than just our DNA database, but could seriously put into question any half-siblingship DNA test done between donor-conceived persons. The likelihood of false positives seems to be unnaturally great. I blogged last year about my anger towards the UKDL and their ridiculously high 99% probability before contacting individuals. My anger may have been misdirected, as what Damian and I are realizing is that this could be a corrective measure (moving from 90% to 99% probability) to adjust for the fact that they too were getting false positives. However, I worry that their increase in stringency may also result in false negatives.
What needs to be addressed is that the problem lies with the inherent limits of CODIS markers, and instead of increasing the threshold either:
a) a new protocol needs to be developed with different algorithms, possibly one that sets a much lower prior probability; or
b) redirect testing to more in-depth analyses such SNP (single nucleotide polymorphism) tests like the new FamilyFinder DNA Test that look at millions of locations across the genome and identifies close relatives.
The downfall of this test is the cost. The plus is that your DNA is stored in FTDNA's database and you can potentially find paternal relatives such as cousins, grandparents, uncles/aunts, and even possibly your donor!!
Bottom line....our advice right now is to use CODIS marker results as only a guideline. We do not trust these results, ESPECIALLY if neither mother was tested!! If there is good reason to believe that two donor-conceived individuals are related....such as sharing the same donor number, then I would take the test results as accurate. This is because the randomness has been eliminated. Another example is with my half-sister and I. She did not have a donor number, but her mom knew it was the same sperm bank. And on top of that I had the previous knowledge of knowing that the doctor's office that her mom used was 100% for sure using my donor on their patients. So again, there was prior reason to believe we were related.
Tuesday, January 25, 2011
Friday, January 14, 2011
And when you just want to escape....
I've had this conversation on several occasions recently with friends, about how even when you are not trying to think of donor conception or being donor conceived, that it somehow slaps you in the face. Either it randomly comes up in conversation, or a crude joke is made on a TV show or movie. Which is why it is so hard to forget about, no matter how hard you try, and why so many of us suffer from burnout trying to be active and speaking out. Because it's always there. And there are always people who are too immature or too block-headed to comprehend what we have to say.
For example, a few weeks ago my mom was watching a rerun of How I Met Your Mother (that I had seen when it was first aired as well). It's one of my favorite shows, but unfortunately the episode that came on that evening was the one where Marshall and Lily were trying to get pregnant and when they discovered that the problem was not Lily, Marshall had to go and have his sperm count tested -- at the end of the episode it turns out that they're both okay, though sadly Marshall goes to call his dad to tell him the good news and learns that his dad had just passed away.
But it was the obscene jokes about sperm donors that really upset me even more than the issue at hand. The idea of infertility does not necessarily always equate to donor conception. However, I was sad to see that the producers at CBS [Edit] took the low blow and decided to crack the sperm donor joke, it made me really lose faith in network TV to NOT offend people.
Now, I suppose if this episode had come on during one of the points in my life where I did not feel emotionally strong enough to handle thinking about and dealing with donor conception, it would have been very distressing for sure. Luckily I was not in one of those times. But the end does not justify the mean. The idea that these jokes are made so blatantly and without regard for those whom they might offend is what concerns me. Minorities that have large lobbying groups are able to be heard when any racist/sexist/etc joke is made by the media. Often there are lengthy apologies to be made.
But when it comes to children......
Apparently there's nothing stopping them. Adult adoptees find themselves in a similar arena, with adoption jokes make frequently in movies and TV. There was a particularly crude adoption joke made on Rules of Engagement, around the same time that the sperm donor joke first aired on How I Met Your Mother.
Since we are eternally infantized, it's easy to crack these jokes. We have no lobbying power, at least in the USA, because we are in such small numbers, and we are up against such huge adversaries who have all the right numbers (in people and in money). The majority of Americans have never met an adult donor-conceived person - that they know of - and the prevailing attitudes are sympathetic to the infertile, since most Americans know of someone who has dealt or is dealing with infertility. Therefore, the jokes will continue.
So what made me decide to blog about this topic tonight was I was chatting online to a friend and he sent me this link to a website that has created stuffed animals of microbes (http://www.giantmicrobes.com/).....from one nerd to another. I was getting a huge kick out of the cute little cartoon recreations of everything from the pimple, to your general Staph infection, to the Black Death and Cholera, and nearly every STD known to man. They even had the "good guys" such as red and white blood cells, platelets, and stem cells.
They also have sperm and egg cells, which I have to say were quite adorable. However, when I clicked on them I realized that it was yet another joke....
But I guess I'm not a comical person........
For example, a few weeks ago my mom was watching a rerun of How I Met Your Mother (that I had seen when it was first aired as well). It's one of my favorite shows, but unfortunately the episode that came on that evening was the one where Marshall and Lily were trying to get pregnant and when they discovered that the problem was not Lily, Marshall had to go and have his sperm count tested -- at the end of the episode it turns out that they're both okay, though sadly Marshall goes to call his dad to tell him the good news and learns that his dad had just passed away.
But it was the obscene jokes about sperm donors that really upset me even more than the issue at hand. The idea of infertility does not necessarily always equate to donor conception. However, I was sad to see that the producers at CBS [Edit] took the low blow and decided to crack the sperm donor joke, it made me really lose faith in network TV to NOT offend people.
Now, I suppose if this episode had come on during one of the points in my life where I did not feel emotionally strong enough to handle thinking about and dealing with donor conception, it would have been very distressing for sure. Luckily I was not in one of those times. But the end does not justify the mean. The idea that these jokes are made so blatantly and without regard for those whom they might offend is what concerns me. Minorities that have large lobbying groups are able to be heard when any racist/sexist/etc joke is made by the media. Often there are lengthy apologies to be made.
But when it comes to children......
Apparently there's nothing stopping them. Adult adoptees find themselves in a similar arena, with adoption jokes make frequently in movies and TV. There was a particularly crude adoption joke made on Rules of Engagement, around the same time that the sperm donor joke first aired on How I Met Your Mother.
Since we are eternally infantized, it's easy to crack these jokes. We have no lobbying power, at least in the USA, because we are in such small numbers, and we are up against such huge adversaries who have all the right numbers (in people and in money). The majority of Americans have never met an adult donor-conceived person - that they know of - and the prevailing attitudes are sympathetic to the infertile, since most Americans know of someone who has dealt or is dealing with infertility. Therefore, the jokes will continue.
So what made me decide to blog about this topic tonight was I was chatting online to a friend and he sent me this link to a website that has created stuffed animals of microbes (http://www.giantmicrobes.com/).....from one nerd to another. I was getting a huge kick out of the cute little cartoon recreations of everything from the pimple, to your general Staph infection, to the Black Death and Cholera, and nearly every STD known to man. They even had the "good guys" such as red and white blood cells, platelets, and stem cells.
They also have sperm and egg cells, which I have to say were quite adorable. However, when I clicked on them I realized that it was yet another joke....
Now, I'm sure some of you are like, get a grip, it's a website devoted to wise-cracking about microbiology. I get that. But what I fail to understand is why it is so funny to make jokes at the expense of another person. I was very amused until that point. Heck, I thought it would be entertaining to buy infectious diseases for my friends and relatives....hehe. But that did me in. I don't want to support a company that finds humor in infertility and in donated gametes. It's not funny. For anyone involved. I'm sure most people who have suffered from infertility wouldn't tell you it's all fun and games and hilarious. And those of us conceived from these technologies surely do not.
But I guess I'm not a comical person........
Tuesday, January 11, 2011
PRESS RELEASE: The Anonymous Us Project goes live today
Announcing "The Anonymous Us Project", First Ever Story-Collective for People Involved in Reproductive Technologies
"Not all the kids are doing all right," says Alana S., founder and curator of AnonymousUs.org, "Anonymous Us is a place for all participants in the fertility industry to share their own truths in a way that retains dignity and privacy for our loved ones, while also sharing valuable perspectives and life experiences."
*********************
January 11, 2011 - New York, NY – AnonymousUs.org is a newly launched website that invites anyone and everyone involved in reproductive technologies, but especially persons born via these practices, to write about their experiences and opinions- anonymously.
In the US, it is estimated that every year 30,000-60,000 children are born through the use of sperm donation. While the fertility industry makes $3.3 billion annually, little is known about the experiences of these children and what kind of adults they grow up to be.
The Anonymous Us project aims to be a safety zone for real and honest opinions about reproductive technologies and family fragmentation. The mission of Anonymous Us is "to share the experiences of voluntary and involuntary participants in these technologies, while preserving the dignity and privacy of the story-tellers and their loved ones."
Alana S., a 24-year-old woman from San Francisco, herself donor-conceived, founded the site as a "tool for better decision-making so that parents and policy-makers aren't relying solely on biased endorsements from clinics and vendors." Alana recognizes that many donor-conceived adults may wish to improve practices and policies, but fear publicity or conflicts of loyalty with their families. They may have ugly family secrets. "Many of us want to speak about our pain, but we don't want our faces on camera or to hurt our parents."
If you are donor-conceived, a former or current sperm or egg donor, a surrogate, parent, adoptee, fertility industry professional, or just someone invested and involved in these practices, you are welcome to submit a story or share your opinion at http://www.AnonymousUs.org. Select stories are read aloud on the free podcast: http://AnonymousUs.org/podcasts.
About The Anonymous Us Project & Alana S.:
The Anonymous Us Project was founded by Alana S., a writer and musician from San Francisco concerned with gender and family issues. She co-wrote the upcoming feature-length film Adam & Eva with filmmaker Michael Galinsky of Rumur Productions, a story about a girl who sells her own eggs to investigate her ancestry and the identity of her sperm donor father. Alana S. currently lives in Brooklyn, NY.
Contact:
Alana S., Founder, The Anonymous Us Project
408-406-6998
AnonymousUsProject@gmail.com
Monday, January 3, 2011
A New Year....A New Theory
So long 2010....Hello Twenty-Eleven!! I am definitely not sad to see 2010 leave us and I am confident that 2011 will be much luckier. This is the year that.......well, you'll just have to wait and see! So many things are going in my life right now - both personally and in regards to donor conception. It's like watching a movie, and I'm anxious to see how it ends!! But of course, the end is simply just the beginning.......
I hope that 2011 will be a promising year to build more of the DNA database. Currently we are experiencing some "technical difficulties", as Damian and I are beginning to question the validity of using CODIS markers to establish any sort of donor-conceived/half-sibling relationship. I will discuss this more in the future, but the bottom line is that the algorithms used in calculating the siblingship index (both what we are using and what professional DNA testing companies are using) are producing false positives among DC adults...likely to do with the randomness associated with how DC adults seek siblings. Again, more later when I have more time to discuss it. This also makes me wary of any professional test result that claims half-siblingship - especially when neither mother's DNA is present. This sheds some significant light on the UKDL situation and may explain why they have set such a high threshold (99% probability).
Please email me if you are thinking about doing a DNA CODIS marker profile/test solely to add to the database, as at this point I have some other options that I feel are a better investment. However, I would be happy to take any DNA results from previously done tests, as always. We can surely add them to the current database and the more results we have the better chance we have at finding a feasible algorithm that is both inclusive enough to allow offspring to find siblings but at the same time exclusive enough that there will be minimal heartbreak from false positives.
So anyways, onto what I originally meant to blog about here. Talking to one of my DC guy friends last week about something unrelated to DC, I suggested to him to take the Myers-Briggs (Jungian) Typology Indicator Test. This conversation led me to ponder if there is a common personality thread among DC adults who are seeking their biological kin. Is there a certain function (for more info about the MBTI and Jung's functions) that is present or dominant that lends itself to offspring being more concerned or interested about these things. I have a hypothesis..........
It's well documented that there is a HUGE spectrum of views among offspring, even those with similar conceptions/family dynamics. DI moms and the infertility industry try to claim that it all has to do with how we were raised and "all you need is love", and for some that ID-release donors are the solution and solve all the world's problems. I don't buy it one bit. I believe that as human beings we have an innate personality and while it can be shaped to an extent based on environment, certain things are just there. My theory is that this "need to know" is tied to our hard-wired personality and therefore parents need to get over their irrational fears and understand that their child may or may not want to know their biological father/mother or siblings and it is not a reflection on good or bad parenting.
Participate in the Donor Conceived MBTI Survey [Offspring ONLY please!!]
Step 1: Take the Myers-Briggs Type Indicator Test (remember your 4 letter type)
Step 2: Fill out brief anonymous Survey (includes some basic demographic information, several questions about your views on donor conception and searching, and finally your MBTI type)
The MBTI test takes approximately 10 minutes. The survey can be completed in several minutes at the most.
I'll blog more later about this idea and more about the MBTI and what it means when I have more free time. This is going to be a chaotic month, but hopefully come February things will have died down and I'll have more time and energy to blog.
I hope that 2011 will be a promising year to build more of the DNA database. Currently we are experiencing some "technical difficulties", as Damian and I are beginning to question the validity of using CODIS markers to establish any sort of donor-conceived/half-sibling relationship. I will discuss this more in the future, but the bottom line is that the algorithms used in calculating the siblingship index (both what we are using and what professional DNA testing companies are using) are producing false positives among DC adults...likely to do with the randomness associated with how DC adults seek siblings. Again, more later when I have more time to discuss it. This also makes me wary of any professional test result that claims half-siblingship - especially when neither mother's DNA is present. This sheds some significant light on the UKDL situation and may explain why they have set such a high threshold (99% probability).
Please email me if you are thinking about doing a DNA CODIS marker profile/test solely to add to the database, as at this point I have some other options that I feel are a better investment. However, I would be happy to take any DNA results from previously done tests, as always. We can surely add them to the current database and the more results we have the better chance we have at finding a feasible algorithm that is both inclusive enough to allow offspring to find siblings but at the same time exclusive enough that there will be minimal heartbreak from false positives.
So anyways, onto what I originally meant to blog about here. Talking to one of my DC guy friends last week about something unrelated to DC, I suggested to him to take the Myers-Briggs (Jungian) Typology Indicator Test. This conversation led me to ponder if there is a common personality thread among DC adults who are seeking their biological kin. Is there a certain function (for more info about the MBTI and Jung's functions) that is present or dominant that lends itself to offspring being more concerned or interested about these things. I have a hypothesis..........
It's well documented that there is a HUGE spectrum of views among offspring, even those with similar conceptions/family dynamics. DI moms and the infertility industry try to claim that it all has to do with how we were raised and "all you need is love", and for some that ID-release donors are the solution and solve all the world's problems. I don't buy it one bit. I believe that as human beings we have an innate personality and while it can be shaped to an extent based on environment, certain things are just there. My theory is that this "need to know" is tied to our hard-wired personality and therefore parents need to get over their irrational fears and understand that their child may or may not want to know their biological father/mother or siblings and it is not a reflection on good or bad parenting.
Participate in the Donor Conceived MBTI Survey [Offspring ONLY please!!]
Step 1: Take the Myers-Briggs Type Indicator Test (remember your 4 letter type)
Step 2: Fill out brief anonymous Survey (includes some basic demographic information, several questions about your views on donor conception and searching, and finally your MBTI type)
The MBTI test takes approximately 10 minutes. The survey can be completed in several minutes at the most.
I'll blog more later about this idea and more about the MBTI and what it means when I have more free time. This is going to be a chaotic month, but hopefully come February things will have died down and I'll have more time and energy to blog.
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