Monday, September 27, 2010

Best donor/sibling searching tools

By popular demand, I am updating/re-evaluating an old post on the best research tools I've found to search for ones donor and half-siblings.  I've broken the list down into several categories: General (Donors/Half-siblings), Donor w/ non-identifying information, and Donor w/out non-identifying information.  For each category I have listed my favorite resources and how to use them/what you need (or how they can be used for our purposes).

General (Donors & Half-siblings):

Registries -- Most useful for younger offspring with donor numbers from sperm banks.
  1. Donor Sibling Registry
    • Pro: Largest registry with most donor and offspring matches
    • Con: $50/year registration fee to post information, see others information, read messages, and contact other members
  2. AmFOR Donor Offspring Registry
    • Pro: Free registry with visible email/contact information of all members
    • Con: Difficult to search (use COMMAND-F = "Find" in browser to search donor number/sperm bank/etc) and smaller than DSR

DNA Databases -- Most useful for older offspring who may or may not have a donor number.
  1. UKDonorLink (MALE and FEMALE) -- autosomal DNA
    • Pro: Connects half-siblings/donors of offspring born pre-1991 in the United Kingdom
    • Con: Only matches with 99% probability are informed, meaning many true matches never know they have a sibling
  2. CaBRI Donor Gamete Archive (MALE and FEMALE) -- X/Y chromosome DNA
    • Pro: Connects half-siblings/donors for any offspring using X and Y chromosome testing
    • Con: Only can connect siblings of the same sex, and females must have mother tested
  3. YSearch: Y-DNA Public Database (MALE only) -- Y chromosome DNA
    • Pro: Can identify paternal genetic surname, giving male offspring an idea as to their biological father's possible last name
    • Con: Because of infidelity/secret adoption/donor-conception in direct line, genetic surname may not be same as biological father's surname


Donors with significant non-identifying information:

If university and/or graduation year is known...
  1. Yearbooks -- E-Yearbook ($5/month; $20/year), University Libraries (best bet if you can get to the University as there is often many other resources as well), or Ebay ($ variable)
    • Pro: Provides a fairly complete list of all men who fit that criteria -- narrow down from here; Seniors often have extra information listed such as hometown, major, Clubs/Interests, etc
    • Con: Appearance is not a good indicator of relatedness and should not be relied on solely for identification; Some yearbooks can be very hard to come by or are extremely expensive (i.e. if there was an important event --- ex: Kent State University's 1971 yearbook is extremely rare and very coveted by collectors for it's memorial to the May 4th shootings)
  2. Alumni Lists/Associations -- University Alumni Associations,,
    • Pro: If yearbook is unavailable, can provide an incomplete list of men who attended that university during that year/years
    • Con: Usually only a very small minority of alumni are active in associations or members of online communities like; Many university alumni associations' information is only available to alumni

If birthday is known...
  1. ($) -- Public Records Index can be searched for individuals born on a certain date, works best if a location where the donor lived in the during the 1980s/1990s is known
    • Pro: Can be used in conjunction with Yearbooks to find men listed in the yearbook who are born that date
    • Con: Donors born post-1970 are less likely (or not at all) going to be listed; Not all public records have birthdays; Subscriptions are quite costly
  2. Free Birthday Database -- Names of men found in yearbooks/alumni lists can be searched to find their birthday (works best for less common names)
    • Pro: No registration or cost involved
    • Con: Not all names retrieve records

If city of residence and time/years of donation is known...
  1. ($) -- Public Records Index can be searched for a specific location, identifying individuals who lived in a city/town during mid-to-late 1980s to the early-to-mid 1990s
    • Pro: Helpful when used in conjunction with university yearbooks and/or birthdays
    • Con: Cost; Not exhaustive (of individuals and years); Only older donors
  2. -- Can be useful for donors who likely still reside in the same city/town today, Used in conjunction with yearbooks/alumni lists
    • Pro: The obvious - Address/Phone number; Age group can help narrow down names
    • Con: Need a name and current location; Common names could prove to return huge numbers of individuals
If a physical description is known...
  1. MySpace -- Recently an offspring found her donor by entering his physical traits, occupation, and location into MySpace
    • Pro: It obviously can work, however offspring typically need several/many non-identifying characteristics to search with
    • Con: How many adults over the age of 30 are on MySpace and not a pedophile??
  2. Dating websites ($) -- I'm not advocating this choice, but I suppose it could work........
    • Pro: Men put way too much personal/physical information about themselves online when they're trying to find a date...the same information that they would put in a donor profile (physical characteristics, occupation, hobbies, location, etc)
    • Con: It's really creepy....and expensive

    If other random tidbits about his life are known...

    1. EMAIL ME -- I might know of a resource/database that might be just want you need!


    Donors with no significant non-identifying information:

    Genetic trait calculators --- Identify and exclude traits of your donor based on you and your mom's traits
    1. ABO Blood Type Test -- ABO Blood type paternity test that either excludes or doesn't exclude an "alleged father" based on the blood types of child, mom, and alleged father
      • Pro: Can sometimes at least exclude one possible blood type for the donor (Blood Type Chart)
      • Con: Need to have offspring and mother blood type
    2. Eye Color Test -- An eye color paternity test that assumes that lighter-eyed parents cannot have darker-eyed children
      • Pro: Can give an idea as to the possibilities of donor's eye color
      • Con: Need to go through each eye color for the alleged father and see which are excluded and not excluded (time consuming)
    3. Mendelian Trait Fact Sheet -- Information about Mendelian inheritance and a list of common traits
      • Pro: Can be helpful to compare with possible half-siblings
      • Con: If you do not have a picture of the donor or have a potential donor in mind many of these cannot be determined
    4. Single Gene Disorders - Mostly congenital disorders that are inherited either dominantly or recessively from a single gene (not mutations)
      • Pro: Very useful if offspring has inherited a genetic disorder and wants to determine if it came from the donor or not
      • Con: Very few offspring suffer from these conditions
    5. List of Mendelian Traits (Cryokid Post)
      • Pro: Old post giving examples of Mendelian traits and how they can help identify traits or eliminate possible donors; Also can be used to compare with possible half-siblings
      • Con: If you don't have a picture or have a potential donor in mind many of these cannot be determined

    This is the short list of resources.  Of course there are others, and depending on each individual situation, some may be better suited than others.  If you have any questions or want me to do a consultation to determine the best route and what resources may be helpful, please email me.  

    A note for younger offspring:

    For offspring who have extensive donor profiles (those born typically post-1990), I have worked with several offspring and recipient mothers to identify resources both publicly available and those through paid subscriptions that have shown to be successful in narrowing down the search, often based on a specific piece of information given in the donor profile that is helpful in identifying him.  

    Such bits of information could be:
    • Age/year of death of a parent/grandparent/sibling --- if cause of death is known that is even better!
    • Age of parents/grandparents/siblings at time of donation
    • Marital status
    • Number of children (year of birth and sex of all children is even better)
    • Occupation
    • Hobbies
    • Personal essays

        Tuesday, September 21, 2010

        Another DNA database update

        For those of you anxiously awaiting the release of the Donor Offspring DNA Database....good news!!  The actual database is nearing completion.  John, our amazing donor-conceived CS professor, spent many many hours this summer putting together the framework that will be able to take the equations Damian and I determined and do the math for us.

        If you are new to reading Cryokid (or want a refresher), here are some other posts that will explain the DNA database and DNA tests in general:

        While it is not yet complete, I am going to discuss what we have so far and what it means for you, the offspring.  What we are creating is a free online database capable of determining varying degrees of potential relatedness among all members.  Offspring can register and then upload their own DNA results from a previous test/profile.  They can also upload the results from their biological mother, if available. 

        A short comment about DNA results:
        There are many types of DNA tests on the market today.  Currently we only have the capabilities to look at one type of test.  That is what is called the CODIS markers.  Most commonly these tests are used in paternity, maternity, siblingship, and avuncular (grandparent or aunt/uncle) DNA tests, as well as DNA profiles.  CODIS markers are 15 of the most common DNA markers used throughout the world, and they rely on what are called STRs (short tandem repeats).  A person inherits at a specific marker, two sets of "alleles", one from each parent.  The alleles are different in the number of repeats of nucleotides (the bases that make up DNA) in that location.  The "alleles" that are inherited from each parent appear in a DNA test as a number, that being the number of times a specific sequence is repeated.

        What we cannot do, as of now, is analyze a DNA test that looks at the X or the Y chromsome.  That would be any test used for genealogy purposes, such as Y-STR or X-STR tests, tests done through CaBRI's Donor Gamete Archive, and those from FTDNA's FamilyFinder test.  

        We hope to be able to provide this service to offspring in the future, but for now we simply do not have the capabilities.  For males who have done a Y-STR test, please take a look at Y-Search for a database of all Y-chromosome results from various companies. 

        Upon registering and uploading either just your DNA results or those of both you and your mother, you will be able to "scan" the database.  By scanning the database it will return to you a list of other members who have a Combined Siblingship Index (CSI) that is over our threshold.  While most countries hold a threshold of 90% (a CSI of about 10.0) probability of relatedness as being conclusive, we understand that often those inconclusive results may be pushed either direction with more information, and we are planning to set our threshold significantly lower to catch as many potential matches as possible.  We can then advise members of how to get the most of their DNA tests.  Sometimes having one or both mother's tested can raise a CSI through the roof!  Other times, if the mother's are not available to be tested, we can suggest other types of DNA tests (such as X or Y chromosome tests) or a second panel or markers on what has already been tested. 

        Besides a list of members with CSI's over our threshold (we will provide the CSI and probability of relatedness for each potential match), we will also provide you their name, contact information (email), year of conception, place of conception, and any other relevant information (i.e. sperm bank/clinic, donor number, etc), that may or may not be of use in determing the likelihood of relatedness beyond a number.  These members will be listed in descending order so you will be able to quickly identify your most likely siblings.

        We strongly suggest that if a potential match is made, no matter how high of a probability, that you proceed with a professional DNA test for more conclusive results.  We will be happy to recommend what companies we feel are the best to work with and the most economical. 

        BUT FOR NOW....

        John, Damian and I have discussed where we want to be with this database in the near future and we have decided that to begin providing information to offspring as soon as possible, we will be manually entering the first 100 members.  That means, you will be entered into our database as it is now (not available to the public yet), and we will return to you by email any list of potential matches.  Once we have reached around 100 members we will move over to having the members upload their own results and having the database function automatically.

        Understand that as we get this up and running the chances of finding matches are small, but as we grow and the more members involved, the higher the chances of finding a potential sibling!

        Please email me if you would like to be a part of this database!!

        Lastly....if you have not yet done a DNA test in the past, please check out Genetic Testing Laboratories DNASafe DNA Profile.  For $90USD you will get your CODIS markers that can be uploaded into our DNA database. 

        If you are looking to have you and your mom tested I'd suggest Genetic Testing Laboratories Maternity Test.  This test is only $110USD and both you and your mother will be tested.  I would hope that it come back conclusive (otherwise you might have a bigger issue to deal with....), but we are not looking at maternity here.  This is simply a cheaper way for you to get both DNA profiles (yeah, I know it's sort of deceitful, but it gets the job done!!).

        And as always, paternity and siblingship tests done in the USA and abroad are always acceptable!!  Remember, these tests do not need to be a "match".  If you've done ANY negative DNA test in the past, that will work!!

        Wednesday, September 8, 2010

        BEWARE of Fairfax Cryobank (and Cryogenic Laboratories, Inc)!!!

        Fairfax Cryobank (as well as CLI, which was bought out by Fairfax recently), one of the nation's largest sperm banks, has a nasty little secret.....they hate donors.  That's right, they hate them.  

        You see, most sperm banks today acknowledge that many donors who may have signed one of those elusive "confidentiality agreements" when they were 18 year old boys often change their minds and become curious about the children they sired and sold later on down the road - often after the birth of their own children they raise.  And many clinics/banks will be helpful and sometimes overly ambitious to help these donors make contact with their genetic children.  In most cases this is providing retired donors with their correct donor number (that is, the donor number that is used in the catalogs and provided to recipients, and not some "other" number).  Some will even give them information about the DonorSiblingRegistry, or even reach out to recipients in some rare instances.

        However, Fairfax Cryobank does none of that.  Actually, they completely forbid it.

        According to their website:
        We stand by our policy of not releasing specific donor numbers to the donors themselves. We believe that if we were to allow donors to have their donor numbers, we would in essence be facilitating their ability to make contact with recipient families and their offspring. Providing donors their numbers would clearly undermine our privacy policy and could possibly cause families and donors, unaware of the outcomes of sharing identifying information publicly, permanent and unwelcome consequences.
        I'm sorry, but this just makes me physically ill reading.  There are MANY donors who have tried contacting Fairfax on multiple occasions to get their donor numbers.  These men are willing and WANT to find their offspring!!  They understand the "consequences" and accept them wholeheartedly!  Most men who join the DSR (or other registries) are fully aware of the possibilities.

        It is completely unethical for an institution to deny the men they recruited to keep their business alive something that is so vital for all parties involved.  They are not giving donor numbers to men who do not ask and do not want contact with offspring.  They are not giving the name and address of donors to recipient parents.  All that they are doing is denying retired donors any chance at knowing their own children.

        I am truly at a loss for words at how outraged I am about this.  While Fairfax might play god in creating children, apparently they also believe they ARE GOD!!!  Denying this information to consenting retired donors is a gross exaggeration of their own power and self-importance.

        Fairfax is a prime example why legislation MUST be forthcoming in the US to regulate the infertility industry, since they do not have the decency or integrity to do it themselves.

        To make matters worse, Fairfax also gets a big fat F for honesty as well.  Numerous Fairfax clients have pointed out that they were told that the donor they chose met certain educational criteria (i.e. having a PhD and/or MD degree for example) and when the recipient later finds the donor without the aid of FC they discover the donor did not in fact have such an educational background, and often were completely UNEDUCATED!!  Not to say that many doctors offices and clinics don't do the same thing, but that is changing information from a 3rd party - such as telling a patient the donor was a medical student when they doctor really has no clue because he bought the sperm from a sperm bank.  That is very different from the sperm bank lying on the donor's profile to make him sound better than he is.

        Does this also mean that Fairfax hides other vital pieces of information about their donors from clients??? I'd bet if they are lying about something as mundane as education, they're sure as hell lying about medical histories as well!!  Oh, so your donor had 20/20 vision and all his parents and grandparents are alive and kicking??  Maybe, maybe not.  I'm sure if Fairfax had their way (which they do, apparently), that said profile might come from a donor who is legally blind and both his parents died young of heart attacks or cancer.  How are you going to find out???  Right, you're NOT.  Because Fairfax refuses to even let their donors seek out their own children.

        So any lies are just a few dirty little secrets......

        I think it's about time that we, as adult offspring, recipient parents, and former and current donors --- the DC triad --- make a stand and demand that Fairfax Cryobank air out their dirty laundry and come clean about these appalling accusations.  We must demand that the infertility industry can no longer "regulate themselves" and continually lie and cheat their way to a multi-billion dollar a year income on the tears and pain of those most directly affected by their unethical business practices.