Saturday, May 8, 2010

Donor Offspring DNA Database - UPDATE!

Good news!! I learned the other day that we may have found someone to help us create a database to store and compare donor-conceived offspring and donors for sibling and paternity matches! Even better is that he is another DC offspring...Adam, an Aussie offspring has a background in IT and programming and is interested in helping us devise a program that would enable registered users to upload their CODIS markers (the 15+ markers used in siblingship and paternity DNA testing) and find potential matches that score a siblingship index over 1.0 (50% probability of relatedness).

Again, even though this database is not yet created I am happy to take any offspring (or donors) DNA results and add them to our growing list which I will manually scan for matches for the time being. Remember, the more people in the database means the more likely you will find a match! Like UKDL, this is going to take years likely, before we actually find success, but Damian and I are confident that with such technology and accessibility available, the chances of adult offspring finding relatives will be greatly increased!

Please email me if you are interested in contributing your DNA results.

PLEASE NOTE: We are not capable of performing the actual DNA test!!! Email me and I'd be happy to recommend several DNA testing companies that I have personally worked with.

What we are trying to provide is a way to eliminate the unnecessary multiple-testing of individuals trying to find their donor families.

For example, I did 3 paternity tests (all negative) and one siblingship test (negative), but I received results for each of these tests. My mom was tested on the siblingship test, which provided her alleles and thus by process of elimination the allele inherited from my donor was deciphered. When I was contacted by my [now] half-sister's mom with her DNA tests from 2 paternity tests, I compared both of our results and was able to determine with considerable accuracy that she and I held a probability of being siblings upwards of 90% - and this was with several marker alleles missing in the original tests! This led us to perform a true professional siblingship DNA test. When the results came back we were considered sisters with 99.8% probability!

We want to provide a way to save individuals money, time, and heartache, by performing the calculations on previous DNA samples to determine if there is even a chance in hell that the two said individuals are related. We promise to inform any individuals that score over 50% probability (combined siblingship index of 1.0) of their potential match. This is because we understand that siblingship tests are inherently inconclusive, and it should be up to the said individuals to determine if they need extra testing, or want to exclude the possibility of being siblings.

See previous posts regarding what DNA tests are in general (Whatcha gonna do with all that junk in your...DNA), and more about siblingship tests and what all the numbers mean (To test or not to test...DNA half siblingship tests, and Even more about DNA half-siblingship tests)

Remember: United States Court of Law states that a probability at or above 90% is considered admissible in court. The UK DonorLink holds a much stricter view, at 99% probability. Thus, individuals who are a part of the UKDL project may in fact have a match with whom they have NOT be informed of!!!

5 comments:

wendy said...

Hi Lindsay,

We are working very hard at the Donor Sibling Registry to secure DNA testing for all of our members at no cost to them. We have been working with some of the world's leading scientists and institutions to try and secure funding so that we can get DSR members tested (so that they could confirm/deny relatedness and also have access to the DNA results to use for other types of testing/results) while at the same time being able to make an important contribution to the understanding and treating of genetic diseases. Stay tuned- I will update on the DSR when possible.

On another genetic front, we will be launching a survey in collaboration with the University of California San Francisco's Institute for Human Genetics next month and I invite everyone to participate. The survey will study some of the interesting traits amongst donor offspring, their parents donors, and their siblings such as personality, memory and physical attributes. We have a unique opportunity to look at donor conceived people and their parents and really inquire about the "nature vs nurture" of it all. By systematically recording patterns in extended families found on the DSR, we will be able to separate heredity and environment in a novel way. The link will be up on the DSR in early June. To show our appreciation for taking the time to complete the survey, we will be offering fifty $100 Amazon gift certificates to be randomly disbursed to participants.

Wendy

damianhadams said...

Wendy this is a different kettle of fish. While what you are trying to do is excellent, this is a completely free service (without the need to be a financial member) for those that have already been tested previously to have their results stored in a database that is searchable. It is similar to what is done with ysearch and ybase.
A DNA testing company that will do free testing? They would lose too much money.

Lindsay said...

Hi Wendy,

I am happy to see that you will be bringing DNA testing services into the DSR - as I suspect many supposed matches are actually false due to wrong donor numbers being recorded, ordered, used, etc; while other matches will likely be made from donors who may have donated at multiple places or clinics that were not informing their patients that the sperm came from elsewhere.

I know that you have already partnered with Kirk and CaBRI - will this be more services brought to DSR members through CaBRI? As Damian mentioned, I can't imagine a for-profit DNA testing company giving away free DNA tests!! However, I am excited to see what comes of this in the future.

Also, as Damian said - our database is something that is meant to fill a void in the current donor conception community. Many older offspring (born pre-1980s) before sperm banks find little use in registries since they have no information. Many of these adults do upwards of dozens of DNA tests with other offspring from the same clinic or doctor's office, or former donors. We want to provide a service to help alleviate the financial and emotional burdens that many offspring and donors struggle with in their searches.

Unlike you we do not have unlimited funds and attention of big institutions - we are just several adult offspring who have an interest and background in the area, enough connections to begin, and want to provide a free service for adult offspring, donors, children of former donors, adoptees, and anyone else who is searching for biological parents and siblings through DNA.

wendy said...

Hi Lindsay,

Nothing is set in stone, we are working very hard to make this happen though. A few clarifications:

The DNA testing would most likely not have anything to do with Cabri. Both Cabri and the Donor Sibling Registry and 501 (c) 3 charity organizations, and neither of us receive any outside funding. I also do not know of any "for profit" companies that would have anything to do with us, or DNA testing. (We tried talking with 23andme for a while, but they were only willing to give a very, very small discount on their fairly hefty fee to DSR members, and in the end didn't have any interest in helping us at all.) Getting the attention of larger scientific research institutions (Cancer, Autism, etc.) has taken ten years and about 20,000 hours of time, effort, perseverance, and commitment to build an organization that represents more than 27,000 donor conceived people, parents and donors and that is worthy of their attention.

When and if we do move forward, we will certainly see if people who have already been tested, can somehow add their DNA to our DNA database as well. Like you say, we couldn't help them save the money of the initial testing, but perhaps we could help them from having to re-test.

I wonder where you got the idea that we have "unlimited finds"? Like you, the DSR is a grassroots organization, grown by a mother and son over the past 10 years. For the first 5 years, I funded and built the organization and site entirely with my own money (and a handful of small donations). When we only had hundreds, or a few thousand members, it was do-able. It was when we started growing to 5, 10, 15, 20 thousand that it became impossible for me to keep the site up, running and grow the organization without financial support from the members.

Up until October of 2009, I worked two, and sometimes three jobs to support my family and the DSR. But finally this past October, I was able to quite my *real* job and make a (much smaller) salary for running the DSR. Many members never pay the membership fee, and most are children, so please do not calculate our revenue by the numbers of members times $50! Our IRS tax forms are open to the public and posted on our site.

The DSR has helped quite a few people match who do not have the luxury of donor numbers. So posting on the DSR, even without a donor number, can be extremely beneficial for some. (i.e. three half-sisters, 39, 40 and 41 who only had the name of the doctor their moms used. Without posting on the DSR, they never would have found each other).

Again, we are working very hard to made a DNA project happen, but this is a pretty lofty goal. Fingers are crossed...

Wendy

Lindsay said...

Hi Wendy,

Okay, I guess I just misunderstood your initial comment and thought that you were providing FREE testing for members.

What I meant by unlimited was that you as an organization have the respect and public voice that myself and the small group of adult offspring speaking out do not have....this gives you a lot of abilities that we simply do not have.

PCVAI is a for the offspring, by the offspring organization, but is truly nothing more than a yahoo group. TangledWebs is an actual organization more advocacy but is based in Australia and the UK. Damian and I are members of both, but we are individuals without a solid organization to back us up.

We are simply two individuals (three counting Adam) with a mission and a passion.