Wednesday, August 17, 2011

Got a cousin match...now what?!

I know I've blogged about this repeatedly this summer, but I'm going to once again sound like a broken record and return to discussing the Family Finder test through Family Tree DNA.  Because I am just that confident in its potential for donor conceived people.

I promised I would do a post on matches a while ago, so here it is!

FTDNA's Family Finder test can identify close and immediate relatives back approximately 5 generations.  That is, a relative that shares a common ancestor with you almost certainly in the past 200 years (versus Y-STR and mtDNA tests whose matches may be a common ancestor from 500+ or even thousands of years ago!!).  Here's a few more points about matches and relatedness:

  • It can also identify distant relatives (more than 5 generations back), but these are only speculative and should not be relied upon.  
  • Very close and immediate relationships can be confirmed/identified with 99.99% accuracy.  If a half-sibling, your bio father, grandparent, aunt/uncle, or any 1st or 2nd cousins test, you will be matched with them 100% of the time and the suggested relationship will help you to accurately identify how they are related to you.  
  • More distant close cousins (3rd) and distant cousins (4th and up) may or may not match with you.  3rd cousins will match with you 90% of the time.  That means if 100 of your 3rd cousins test 90 of them will show up as matches, but 10 of them will not.  This is simply do to random inheritance and 3rd cousins only share 0.78% of their DNA (1/16 gg-grandparents), so not every set of 3rd cousins will have inherited enough of the same bits of DNA from their common ancestor (gg-grandparent) to show up as matches.  4th cousins will only match 50% of the time, and 5th cousins and beyond even less.  So obviously the test has limits, but the chances of finding a 4th or 5th cousin who has any idea how you are related let alone who your bio father is is about as likely as finding a needle in a haystack!!
  • As I've mentioned before, if you're Generation X or Y, chances are most of your matches are at least a generation or two older than you, so if the suggested relationship is 3rd cousin it's possible you are actually 2nd cousins once removed...that is instead of both of you sharing a common gg-grandparent, it might be your match's g-grandparent and your gg-grandparent.  This is just something to keep in mind for both you and your matches.  

Once your test is completed, your results will be returned to you and you will be able to access your list of matches...any relative that shares enough DNA with you to be considered a match who has also signed their release form.  All of your matches will list a relationship range as well as the amount of shared DNA.  Close and immediate matches will also list a suggested relationship (that should only be used as a guide to establish where the connection might lie).  For some matches they might have also added surnames known in their family tree and a few might even have their family trees (GEDCOMs) available on FTDNA.

The good news is, even if you do not have many matches when you first get your results, or you do not have any close (3rd cousins or closer) matches, do not fear, as more and more people test you will get more and more matches.  This is definitely a plus of FTDNA, in that there is no subscription so you will receive new matches indefinitely.

Now ideally, matching with a very close or immediate relative is the best - duh.  In this case you will almost certainly be able to identify your bio father (unless it's a DC half-sibling, adoptee, or some other "non-paternal event").  But most likely you're going to get matches in the 2nd, 3rd, and 4th cousin range.  I'm going to focus from now on on 3rd cousins since these seem to be the most common close matches that appear.  From here on out I'm also going to assume that these are paternal cousins and not maternal.  I've discussed this in the past, and still strongly suggest to have a maternal relative (sibling with a different donor, mother, aunt/uncle, grandparent) tested to help separate maternal and paternal matches.


Hypothetical situation: So you have a bunch of matches and hypothetically your top 3 matches all have a relationship range of 2nd-4th cousin with a suggested relationship of 3rd cousin.  What do you do now?  

1. The first thing you should do is look if they have surnames listed.  Are there any names in common?  If so this might show that these two (or however many) may be related to you on the same line/branch.

2. Go to the Chromosome Browser (link in left column under Illumina OmniExpress) and check off all 3 of these top matches.  Set the threshold to 5+cM.  Where are the shared segments of DNA between you and these 3 matches?  Are there any areas that have overlapping segments?  If so, this is another avenue to determine if these matches are all on the same line/branch.  Also play around with all 3 of these matches and see if there are any of these matches that have overlapping segments with any of your matches.  The main reason for this is to help your matches to narrow down how you might be related to them, if there are common matches between you.

NOTE: You may or may not have received any emails from your matches.

3. Now is the time, if you have not been contacted yet by matches, to go forward with initiating contact.  You will have your matches names and email addresses provided.  My personal suggestion for initial contact with matches is to be vague but don't lie.  Unfortunately there are some people involved in genealogy who may not feel comfortable sharing information with someone who is adopted or donor-conceived.  Luckily this seems to be a rarity, as genealogists are in the "business" of finding family!!  However, while many genealogists have come across adoptees searching, many have not had experience interacting with donor-conceived people, and as with the rest of society, there is a prevailing attitude and stigma set on us.

Here is an example of an email to send to new matches:
Dear __________,
I just received my Family Finder results and we were listed as suggested 3rd cousins.  I believe our connection must be on my paternal side.  I have very little genealogical information on my paternal family so I'd be grateful for any information you might have.
Thanks,
________________
Some might assume you are adopted at this point - again, many genealogists have come into contact with adoptees.  If they think you're adopted and are not refusing to provide information you're probably safe to correct them and disclose.  As you correspond with these matches you can "come clean" about being donor conceived when it feels right.

4a. If you made it to this point positively your match responded to your email and you're on your way to getting to know your family (even if it is distant) and perhaps gain more knowledge or direction towards your bio father's identity.  You might be amazed at the incredible wealth of information you matches have, and many, even if they are unable to identify who your bio father is, are more than willing to accept you as family and help you as best they can.

4b. If your match did not respond, or refuses communication, all is not lost.  Unlike 23andMe (with which if a match doesn't respond you're up a creek without a paddle because you don't have a name or any information on your match and his/her family), FTDNA provides the name, email address, and if the match submitted ancestral surnames and/or GEDCOMs.  With this information at least you have a name and some information so you can research that person and his/her family on your own to try and gather more about their family.  A great place after a basic Google search (some people have public family trees up on the WWW) is Ancestry.com.  You can get a free trial subscription for 2-weeks, and can pay for a single month or up to a year subscription (though it's cheaper in the long-run to pay for the year subscription).  Not only are there millions of genealogical records (church, local government, family, etc), census records, newspapers, public records (very useful if you have a DOB and a location or possible surname), and more, but there are also millions of public family trees created by Ancestry members.  Since FTDNA is geared towards genealogists, many of your matches may have a family tree posted publicly on Ancestry.com (or other websites such as MyHeritage.com), and if you can find it you can at least see the family tree (minus any living members).  This isn't going to give you your bio father's name (unless you're an older offspring and you believe he's likely deceased), but it might point you in some directions.

5. Join projects....and/or get involved.  If one of your matches has a family group, they may invite you to join.  This can either be something like a FTDNA official project, or a private group/listserv.  Even if your matches don't have information, their family members might!!  I know this to be the case just in my mother's family with regards to very recent family history - sometimes one sibling or one branch of the family has some bit of knowledge that was for some unknown reason never passed on to the others.  So it's possible that someone else might just have a little golden nugget of information.

6. And last but not least, remember as you start this journey...these matches are your family.  Worst case scenario is you will not gain any further information about your bio father from this test.  But while that technically can happen, do not pass over one of the most important aspects of this test.  You have found your family.  They may not be your bio father, or even know your bio father, but they are your kin.  Savor the opportunity to get to know your bio father's family and learn more about yourself in the process.

Monday, July 25, 2011

The pink elephant in the room

I am a failure of the infertility industry.  Why?  Because I was told I was donor-conceived.  The philosophy of ART invented by the infertility industry is one of secrecy.  Intending parents go to some infertility specialist and he "cures" them of their infertility and instructs them to go home, make love, and forget their visit to his office ever happened.  

The problem with this philosophy is that as human beings, we have the capacity to remember.  Intending parents cannot forget this procedure, and for some it consumes them.  Hiding this shameful secret destroys them from the inside out.  For some the only solution was telling their child (often an adult by this point) the shameful secret.  Many recipient mothers disclosed this secret discreetly, not telling their husband.  Even more offspring are instructed directly or indirectly that it was not something to be shared outside of their immediate family, often keeping it from extended relatives such as grandparents, aunts, uncles, and cousins.  Often there is a subliminal message that this is something to be ashamed about and should not be talked about in public.

Therefore, the secrecy and shame has now been transferred from parent to child.

For children conceived in "alternative" families....same-sex couples or single parents, the conception story is often much more public, sometimes to the extent that the child is bombarded with the facts of their conception broadcast to the wider community.  In this instance, the opposite is the case.  The child is unable to conceal this fact to the world and are often put on a pedestal as a symbol of the rights movement and not given his or her proper space to conceptualize and comprehend their story.

Thus, the opinions and expectations have now been transfered from parent to child.

Whichever the case, donor-conceived individuals often find themselves in this twilight zone of sorts, trying to not only deal with their conception but how it is viewed by the rest of society, as well as by their own families.

For many of us, donor conception really is the elephant in the room, the truth that we know and will never forget, but that we find difficult to discuss in public and therefore attempt to ignore, despite it being impossible.

For most recipient parents, their biggest hurdle is disclosure.  There are entire message boards dedicated to it, entire books and seminars discussing it.  To them it's this huge dilemma.  How on earth am I going to explain this to my child?!?  And while it might be hard, it might be uncomfortable, it might be painful, you're talking to your child about their conception.  They have a right to know the truth about their own identity.

What most parents forget is that they have it easy.  We have it hard.  We have to live for the rest of our lives with this knowledge that is directly tied to us.  Our parents don't need to tell everyone that their child is conceived with a donor (some do, but that's a whole other story that follows along with my previous comment about turning their child into some reproductive rights symbol....).  However, for us, each time we meet someone new we find ourselves in the same situation.  Do we tell this person?  And if so, HOW?

Most people get uncomfortable when they hear words like sperm, egg, conception, etc.  So needless to say, disclosing being donor-conceived to someone is usually the most difficult and awkward conversation we will have.  We all take a variety of paths to disclosure.  Often it depends on the person or the circumstance.

Sometimes it's like pulling off a band-aid or jumping in freezing cold water.  Quick and painful, but once it's done it's done.  Other times it's like a well-rehearsed waltz.  Careful planning and practice to make everything perfect so it is smooth and effortless.  There's also the drunken stupor disclosure, that usually follows a night of heavy partying and that pesky sentimental euphoria that accompanies it.  I don't advocate the last course of action, as there is the significant chance that neither you or the other person will remember the disclosure in the morning.

But lets go back to family.  Because for many of us, due to the secrecy and shame that our parents pushed on us when they disclosed our conception, discussing donor-conception with them can be awkward at best, and terrifying at worst.

Sometimes discussing it, especially with social fathers, makes us feel as though we are being disrespectful and/or hurting our parents.  Again, why must we hold our parents emotional wellbeing higher than our own?!?  So many of us are silent to our families about our feelings and our journeys.  Mostly because once disclosure occurred, it was assumed that everything would magically go back to the way it was.  But it can't.  It never can.

For me, donor conception is like this haunting feeling in the back of my mind, in the pit of my stomach.  There are times when I don't think about it definitely.  But I don't forget.  It's always there.  It's the elephant in the room, that everyone knows but no one wants to discuss.  And that is a very isolating feeling.

Wednesday, July 13, 2011

Official Release: Donor Conceived DNA Project!!

I am excited to announce the creation of the first and only worldwide DNA project for donor-conceived adults and former/current donors through Family Tree DNA.  



The main goals of the project will be as follows:
  1. A central location for donor-conceived individuals to locate half-siblings
  2. A central location for former and current donors to locate their biological children

Other goals of the project are to provide awareness to donor-conceived adults, former/current donors, and parents of donor-conceived children to the benefits and successes of using DNA tests to identify not only half-siblings but to give direction to the identity of the biological parent, and to analyze the DNA of donor-conceived adults in an anthropological light.


Benefits of joining the project are:
  1. A place to direct potential half-siblings to without dealing with costly and ineffective and inconclusive half-siblingship DNA tests using CODIS markers
  2. Ability to have expert advice on interpreting results and assistance on using results to identify potential biological parents
  3. Opportunity to be involved in a revolutionary project that can confirm donor relationships without the use of donor numbers, mother's DNA, or costly registries
  4. Opportunity to identify donor-conceived adult relatives beyond half-siblings (such as cousins)

Benefits for the donor conception community as a whole:
  1. Identify DNA trends among donor-conceived adults
  2. Identify relative groups who all acted as donors (such as fathers and sons or brothers)
  3. Identify donors who may have donated at multiple locations with different donor numbers
  4. Identify significant age gaps in donor-conceived half-siblings from the same donor

Tests currently accepted:
  1. FTDNA's Family Finder autosomal test (for males and females to identify genetic relatives on all lines including paternal cousins and male and female half-siblings)
  2. FTDNA and any compatible 3rd party company's Y-STR tests (for males only to identify genetic relatives from the direct paternal line...useful in identifying possible surnames of biological father and confirming only male half-siblings)


YOU MUST ORDER (or already have done) A DNA TEST TO PARTICIPATE IN THIS PROJECT!!!
FTDNA's Family Finder test: $289 (PREFERRED)
FTDNA's Y-STR tests: starting at $169


Disclaimer for minors:
Parents of donor-conceived children are advised to make sure that your child is of an age to consent to having his or her DNA swabbed and added to the FTDNA database as well as this project.  I strongly suggest minor children be at least 13 years of age.


Upon requesting to join you will be asked to answer the following questions
Name:
DNA tests ordered:
Offspring or donor:
Year of conception or years donated:
Sperm bank or clinic where donor donated (if known):
Doctor that performed the insemination (if known):
Place of conception:
Donor number (if known):
Siblings (if any) - please note if any siblings have done DNA tests and what tests:


Please email me with questions or concerns about these tests or the project.


Feel free to repost this announcement to other DC groups.


Lindsay Greenawalt
Group Administrator
Donor Conceived DNA Project

Saturday, July 2, 2011

Rhode Island is #7: Unconditional Access to OBCs....and hope for donor conceived offspring??

From Bastardette: Yesterday was a celebratory day for the Adoptees Rights Movement.  Rhode Island became the 7th state to provide unrestricted access to Original Birth Certificates for ALL adoptees born in the state.  S478 Sub AA was signed into law yesterday at noon.  The law will go into effect on July 1, 2012.

However, in the donor conception world equal rights are still decades behind.

With the recent appeals upset by the state in Olivia Pratten's groundbreaking court case in British Columbia, she has another battle to fight to gain rights for donor conceived adults in Canada.  The good news is, since the appeal will go to the Supreme Court of Canada, IF (and only if) she wins, donor anonymity will be removed in not just BC but every province in Canada!!  While the appeal after such a successful win must be devastating to Olivia and her family and her attorneys, if they can convince the SCC of the unconstitutionality of destroying records and denying donor conceived adults from learning the identities of their biological parents, then the ramifications would set in motion a hard precedent for other states and governments to deny.

Here in the good ol' USA, the first tiny baby step in reform is beginning to brew.  On the weekend of Independence Day, there is a tiny glimmer of hope, that human rights, children's rights, Americans' rights will prevail over greedy corporations and money.

The Governor of the state of Washington recently signed into law the Uniform Parentage Act that, effective July 22, 2011, demands that anyone who provides sperm or eggs to a fertility clinic must also provide identifying information and a medical history, and that children born from these donated gametes can return to the fertility clinic at age 18 to request this identifying information and medical history.

However, as is the case in many adoptee OBC bills that spring up across the country, there's a catch.

A veto.

Unfortunately Washington was too scared of the potential loss of donors, so they added a cop-out.  Donors can file a disclosure veto that prevents the clinic from revealing identifying information (not medical history) to their biological children.

While I am saddened by the apparent cowardice in giving donor conceived offspring actual human rights against the threats and interests of the infertility industry and the ASRM, this is definitely a step in the right direction.

I hope in the future there will be as many vocal  donor conceived adults as adult adoptees, and legislation like this will be discussed and voted upon in many states, and that compromises like disclosure vetos will be fought against.

But in the meantime, baby steps, we're taking baby steps here.

Thursday, June 23, 2011

What do my Family Finder test results mean?

A slight oversight on my part, I realize that I never did the post that I initially wanted to do for my series on FTDNA's Family Finder test, and that is what information do you get from this test and what does it all mean?

What is the Family Finder test?
Family Finder (FF) is a product from Family Tree DNA that can identify genetic relatives both close and distant up to 5 generations.  The test uses autosomal DNA (Chromosomes 1-22) and the X chromosome to identify regions of your DNA that are "Identical By Descent" (IBD) with other members of the database.  Based on the amount of IBD (as opposed to "Identical By State" (IBS), which is DNA shared between two people that is coincidental) DNA shared between two individuals the algorithms created by FTDNA can determine a relationship range as well as in close genetic relatives, a suggested relationship.


What information do I get from this test?
Personalized website: MyFTDNA
After you order a kit, once it's mailed to you and you swab your cheeks and return the kit to FTDNA, you will get a confirmation email that will identify your Kit # and password.  Then you log into MyFTDNA with your kit # and password and you will be brought to your homepage where once your results come in this will be where everything will be located.

This is what my MyFTDNA homepage currently looks like with my FF results back.

When you first get your kit back you will need to go to where it says "Pending Lab Results" (marked in green). This will tell you what batch # you are in and when your results are expected back.







Once your results are returned the heading (marked in blue) where it says "Family Finder Illumina OmniExpress" will have listed the following tabs (click to take you to that section of this post):


These are the tools that you're going to use to identify your paternal relatives and possibly your biological father.


Matches
Obviously your matches are the most important aspect of this test, but in order to gain the most from them I'm going to explain a few things.

When you first get your results and you click on "Matches" you will be brought to a page that looks like this:


This is a list of your genetic relatives.  However, the default of what is shown is only your close and immediate genetic relatives.  If you do not have any make sure you change the "Relation" bar to include ALL MATCHES.

My close matches take up 2 pages, and all my matches take up 7 pages (I have 12 close matches and 66 total matches).

What you see here is the name of your genetic cousins and the following pieces of information.
Relationship range - this is a range based on FTDNA's algorithms that determines about how close or distant they believe you and this person to be based on the amount of shared DNA.
Suggested relationship - this is again, based on the algorithm devised by FTDNA and is the "most likely" relationship based on DNA. Only close and immediate relatives have a suggested relationship.
Shared cM - cM is "centimorgans" and it's the standard measurement of distance for DNA.  It's actually the recombinant frequency, so if 1cM corresponds to 1 million base pairs, that means that if two markers or SNPs in the genome are 1cM apart, there is a 1% chance of them being separated through crossing-over in a single generation.  So the more shared cM's two people have means they are more likely to be closer related.
Longest block - Again based on cM, while the Shared cM looks at the total amount of shared DNA across the genome, the Longest Block looks at the longest stretch of shared DNA in a row.  Obviously, a long stretch of identical alleles between two individuals suggests that they are very closely related.
Ancestral Surnames - This is a SELF-REPORTED list of surnames that they know are a part of their family (though due to non-parental events - infidelity, secret adoption, donor conception, etc - these are not always accurate).  However,  this will give you an idea as to the potential surnames of your biological father, his possible ethnic groups, and the location(s) that his family may live or have lived.

NOTE ABOUT SUGGESTED RELATIONSHIPS:
It came to my attention after I got my results and started talking to my matches (it never dawned on me before), that the majority of people who order genealogical DNA tests tend to be older (Boomers and up), because they tend to be the ones with the time on their hands to be doing hardcore genealogy research, and have the money to spend on such tests.  However, many donor-conceived adults who are thinking about or have already ordered this test tend to be younger (Boomers and down) than the average genealogist on FTDNA.  So the suggested relationships for those of us who identify as Gen X or Gen Y is going to be skewed.  For example, my #1 match had a relationship range of 1st to 3rd cousin and a suggested relationship of 2nd cousin.  But he is an older gentleman, likely in my grandmother's generation.  So while FTDNA suggests we are 2nd cousins, it is unable to take into account that there is a 2 generation gap between us, so we are probably "closer" cousins than that.  Turns out we are actually 1st cousins 2x removed.  But the algorithms cannot differentiate that.  So just FYI, if your matches are significantly older than you are, it's possible that the most recent common ancestor (MRCA) is not, for example suggested 2nd cousins, your g-grandparents.  In my example, our MRCA is his grandfather, but my gg-grandfather, thus 1st cousins 2x removed.


Chromosome Browser
This is a tool where you can select up to 5 of your matches and see where on the genome you have shared DNA.  This is especially helpful if you want to see perhaps if one of your matches might also be related to another one of your matches.  Though remember, if you all share the same segment of DNA with two different matches it's highly likely that all 3 of you are related, but if there is no shared DNA between the 3 of you it does not suggest that you are NOT all related.


Known Relationships
The KR tab is really sort of a crappy tool.  It's something that honestly should be available for all of your matches, but has been relegated to only those with whom you supposedly can identify with a paper trail. What it does is that for matches that you identify as a "known relationship", you are then able to see what matches you have in common.  Ironically, this feature is available on the free GEDMatch program (but the downfall is that it's much less accurate).


Population Finder

The PF tool is still in beta, but for those of us who are donor-conceived, it might be the best chance we have at determining a general locale that our biological father's ancestry might lie.

As you can see at the left, this is my PF results.  They are as accurate as they could be with the very limited reference samples that FTDNA uses.  Here is a list of their sample set.  As you can see there are only a handful of different ethnic groups for each large population.


The European population set is:
Northern European (Finnish and Russian)
Southeast European (Romanian)
Southern European (Italian, Sardinian, and Tuscan)
Western European (Basque, French, Orcadian, Spanish)

Obviously there are some really huge ethnic groups missing just in Western Europe, not to mention the rest of the continent and all the other population groups!!  What this means is that your PF results are going to take your data and match it to the closest continent(s) and population(s) as possible, but they do not mean that those are your ethnic groups.  Obviously I have no French ancestry, yet PF says I'm 72.4% Western European with French and Orcadian (the Orkney Islands are a part of Scotland).  I'm also a quarter Armenian, yet my Middle Eastern results (27.6%) came up as Iranian (right next door), Adygei (a Caucasus people near Russia - Armenians are also a part of the Caucasus population), and Druze (an eclectic religious sect thats beliefs are a combination of all the Abrahamic religions (Judaism, Christianity, and Islam) found throughout the Levant, mostly Syria, Lebanon, and Israel - not really sure about this one, but same region thus probably similar DNA).

Bottom line, the ethnic groups that I belong to are not population groups that are used in this sample set, so they picked ones that most closely resemble my true ethnic heritage.

My suggestion if you want more accurate ethnic breakdowns, after you get your results email your raw data to Dr. McDonald.  His population sets are much larger and more inclusive and he will give you a much more definite idea as to your ethnic makeup.  Dr. McDonald's analysis of my DNA was pretty much dead on.

Here's what he said about my ancestry:

Most likely fit is 70.5% (± 3.8%) Europe (all Western Europe) and 29.5% (± 3.8%) Mideast (various subcontinents).
The following are possible population sets and their fractions, most likely at the top:
English= 0.677 Armenian= 0.323 
French= 0.768  Iranian= 0.232 
French= 0.726 Georgian= 0.274 
French= 0.696   Adygei= 0.304 
English= 0.660 Georgian= 0.340 
These are in fact exactly what I would expect given what you say. 
Czech comes out an (English or French)/(Armenian or Georgian) mix or an English/Romanian. Thus its no surprise that English-Armenian fits best. 
The Mideast on the chromosomes is very weak indeed, very close to Europe, as befits just a little Armenian, which itself is rather European.
 I'm going to do a post in the near future just on McDonald analysis, so stay tuned for more information about what Principle Component Analysis is and what information you get from Dr. McDonald.


Download Raw Data
Fairly self-explanatory.  You can download your raw data and then use it in some of the programs and tools I talked about last week.

***************************
I will continue this series with more information and advice on how to use your FF results to best of your advantage, including how to best contact matches, how to gain information from matches that don't respond, and more!