The perks of being donor conceived...and other absurdities

Humor Alert: The following list contains significant amounts of hyperbole, tongue-in-cheek, puns, irony, and sarcasm. 

1. You don't know your ethnicity, so every holiday is yours to celebrate!!  St. Patty's Day - Check!  Christmas - Check!  Chanukah - Check!  Cinco de Mayo - Check!
2. You get to legally/ethically answer "I don't know" for loads of very personal questions, that most people don't want to disclose in the first place.
3. You are a vital part of keeping the USPS still operating with the large number of birthday/holiday cards needed to be sent to your dozens (or hundreds) of siblings across the country/world.
4. You keep DNA testing companies in business.
5. You would greatly benefit from a frequent-buyer card with your choice paternity/siblingship DNA testing company.
6. Your medical history is like a game of Russian Roulette....never know whatcha gonna get!
7. Using words like "sperm" and "conception" on a first date are commonplace.
8. First date??  Wait you need to get that DNA test first!
9. You have an excuse for years of therapy.
10. You can believe that your father is a celebrity...or a Super Hero (or Arnold Swarchenegger - HAHA) and not be thought of as having an overactive imagination.

Humor me, readers.  Lets keep 'em coming, what are your best (or worst) perks of being donor conceived?? 

Adventures with Family Finder DNA: Part I

Thanks to the kind financial assistance of a very awesome donor conceived adult who wishes to remain anonymous, I am now able to submit my DNA to Family Tree DNA's Family Finder Test!!!

Yesterday I received my test kit in the mail.  The kit contains three sterile scrapers, three vials with special solution that the scrapers are ejected into after swabbing, the release form, and a plastic bag and pre-addressed envelope.  By signing the release form you allow Family Tree DNA to provide your genetic relatives with your name and email address.

FTDNA collection kit

And here we go....

Scraping cheeks for DNA

Ejecting scraper into vial

Once you have completed your three separate swabs (done several hours apart), you place the three vials in the small plastic bag and then the plastic bag and the release form in the pre-addressed envelope provided by FTDNA and mail it back.  

Once FTDNA receives your DNA samples, they must extract the DNA from the swabs and store it.  FTDNA stores your DNA indefinitely, so in the future you can add additional tests and they do not need to recollect your samples.

The Family Finder DNA test uses a product called Illumina OmniExpress, which is a microarray test that looks at over 700,000 SNPs (single nucleotide polymorphisms) across the genome.  It often takes several weeks, or upwards of a month, to get your results as this test is very costly so they "batch" DNA samples together to make sure that they have the entire microarray plate full of samples (I believe 12 samples per plate for this test).

So over the next few weeks and months I am going to be chronicling my adventure with the Family Finder DNA Test, including a more in-depth explanation of what this test look at, how it can help with genealogy, and finally how it can potentially be used for donor-conceived adults who are looking for answers.  I will also update everyone on my results.

Quick post on using FamilyFinder DNA

So between advising two DC friends of mine who recently went through with FFDNA tests to help them identify their biological father, and reading on The Genetic Genealogist: Using Autosomal DNA Testing to Identify An Adoptee's Roots, I thought it would be a good time to reiterate this opportunity (albeit a pricey one).

Family Tree DNA's Family Finder Test uses hundreds of thousands of locations across the genome (compared to 15 in a traditional DNA test) and has a large database with which they can identify not just close relatives (parents, siblings, grandparents) but as far out as 5-7th cousins!

This test is especially effective if both you and your mother are tested - though since the cost is close to $300/person, it's not imperative but very helpful.  It's especially helpful if you do not have a very detailed family history of your mother's family, where having her tested will show which matches were maternally inherited (those you share with her), and by process of elimination which matches are paternally inherited and could lead you to your biological father.

So what does this mean for you?  It means if you can identify "close cousins" on your paternal side, it's possible to trace or identify who your biological father is.  Many people who submit their DNA to FFDNA are genealogists, and many have very in-depth family trees.  If you identify a paternal 2nd cousin, this means that individual's father or mother was your biological father's first cousin.  It's likely that that person may have information or even an name of a person that fits the criteria of your biological father (i.e. a medical student at X University from this time to this time).

There are also other tests out there that provide similar information, such as 23andMe - which also provides medical information as well.  I've blogged extensively about the different tests and resources out there...here are just a handful:
Best donor/sibling searching tools
The CODIS Marker SNAFU
Whatcha gonna do with all that junk, all that junk in your...DNA??
PAGE: All About DNA

I hope to save some money and in the near future submit my own DNA for the FamilyFinder Test, which of course I will chronicle here.

Please email me if you have any questions about these tests as I can direct you to people who have gone through with one of these tests and can give you greater insight.

Goodbye to one of our own: Alison Davenport

Last week I was contacted through Facebook by the daughter of a donor-conceived adult friend of mine, Alison Davenport, to inform me that Alison had passed away on April 20th at her home in Southampton, England.  Alison, who blogged her battle at Journey Into The Bubble, had a rare form of non-Hodkins lymphoma.  Alison learned of her conception in the midst of her struggle in the process of trying to find a bone marrow donor, and became very vocal in the media and through her blog.

While I never had the opportunity to meet Alison, I will always remember her for being so courageous and optimistic in the face of adversity.  She was an inspiration for us all, reminding us to never give up hope.

Rest in Peace Alison, we will miss you.

*******************************


Challenging donor anonymity: Tracing my father could save my life
When cancer sufferer Alison Davenport started to search for a bone-marrow donor, she was shocked to discover that she had been conceived by donor sperm.

Alison Davenport Photo: CHRISTOPHER JONES

By Victoria Lambert          The Telegraph
7:00AM GMT 21 Dec 2009
Sperm donations prior to 1991 were anonymous. There was and is no requirement for a record to be kept. Between 1991 and 2005 (when the law changed again), records of sperm and egg donors were kept, and, since October 2009, any child born of those donations can apply (after the age of 18 or in special cases, 16) for non-identifying information about their biological parent, such as hair colour – but not the name. Those conceived after May 1 2006 can apply to learn their father's name from the age of 18. Donors (from 1991 to 2005) can apply retrospectively to have their names attached to their case files and learn some facts of their donation. UK DonorLink is a voluntary contact register to help older people conceived through donated sperm, and/or eggs, their donors and half-siblings to exchange information and, if desired, to contact each other. In 2010, the Human Fertilisation and Embryology Authority will launch a review of policies including the upper age limit of male donors; the 10-family limit; and reimbursing donors for expenses and loss of earnings. When Alison Davenport began her hunt for a bone-marrow donor the last thing she expected was to stumble on a family secret that would trigger a search for an entirely different type of donor.


Alison, 63, a retired English teacher from the village of Netley Abbey, outside Southampton, was diagnosed with Stage 4 mantle cell lymphoma, in January 2007. This is a rare cancer, a type of non-Hodgkin's disease, which affects lymph sites (where the body's key defence agents, white blood cells, are normally produced). She was warned that it was treatable, but incurable.


"My oncologist was frank, which I appreciated. I was told the life expectancy for mantle cell lymphoma is from two-and-a-half to five years."


She endured a "severe" regime of chemotherapy, but the disease was still present. Doctors advised that a bone-marrow transplant would be her best option. This would allow them to use a high dose of chemotherapy to kill off the remaining cancer. Bone marrow would be destroyed as a result, but a transplant would replenish those missing cells.


Meanwhile, Alison carried on teaching four days a week at Wykeham House School, in Fareham. But, in November 2008, she discovered a swelling in her groin. "I knew straight away that the cancer was on the march again."


In January 2009, she began another 10-month course of chemotherapy. "I was also referred to the bone-marrow team, so that they could begin looking for a match," she says. Doctors first test family members, as this will lower the chance of rejection or infection, before widening it to a worldwide search.


"I told them my mother was of Scottish stock with Danish ancestry and that my father was English."


It was at this point that events took an unexpected turn: "My medical team said that my DNA, which they were using to find me a bone-marrow match, didn't match my parent profile and was, in their words, 'odd'. This meant it would be more difficult to find a donor."


When Alison told her 96-year-old mother this, she could never have predicted her response. "I had hoped to carry this secret to my grave," her mother said. "Your father and I couldn't have children. You were donor-conceived." A man had donated sperm to Alison's parents.


"The shock was heart-stopping," says Alison. "I didn't blame my mother for keeping this secret, but at one stroke, I lost 50 per cent of who I thought I was. My whole sense of self disintegrated."


Alison also knew this meant that her hope of finding a close relative who could become a bone-marrow donor was halved. Her lack of knowledge about her true father could cost her life.


She asked her mother for details, but all her mother knew was that the donor was a student, and he was musical. As the law currently stands, Alison has no legal right to trace him. Before 1991, when the law was changed, sperm donors were granted anonymity if they so required. Furthermore, when Alison sought to establish whether any records existed from that time, she was told they had all been destroyed.


Looking closer to home for a match was unsuccessful; Alison's non-biological father had died when she was 17. She has two grown-up children, Anna and Jonathan, with her husband Ray, a photographer/lecturer, but neither were suitable.


In about 30 per cent of cases, a family member can offer a good match, but for 70 per cent, another donor will need to be found. Genetic make-up is incredibly varied and a match is made on inherited characteristics or "tissue types". The likelihood of finding a matching donor is much greater if the donor is from a similar ethnic background to the patient.


Although it is possible for a bone marrow match to be found anywhere, due to global migration, researchers are finding that pinning down their patient's racial heritage can speed up the process. At present, ethnicity can only be deduced by examining the DNA in the male line.


Gradually Alison began to piece together the story of her conception."My mother and father were helped at a central London practice run by a New Zealander called Reynold H Boyd, probably in Harley Street. But it seems that all Mr Boyd's records were thrown out after his death.


"Artificial insemination in the early part of the 20th century was not common, but it was going on, principally among the middle classes, who could afford it," says Alison. "My research has revealed that medical students may have fathered up to 300 children each, and made many more donations. Limits have now been imposed to cut down the chances of any siblings meeting in later life and marrying. One man can donate no more than 10 times."


So it seems Alison is not alone, and that many other people over the age of 50 may be the product of secret conceptions that we associate much more with the modern age of IVF.
Alison was hopeful in May, when a close bone-marrow donor was found in Germany. Could her father have been an Eastern European refugee from the Second World War, perhaps starting medical school in London? She began writing a blog, sharing what she felt about her search for her father, and she made contact with others in her position.


Even among others who have been donor conceived, there are many viewpoints, whether they were told by their parents, or kept in the dark, like Alison. "We seem to be a vociferous bunch," she says. "Some are bitter at what they have learnt; others are cynical."


Most want to end the hegemony of donor secrecy. Currently, children conceived after 1 May 2006 are allowed to apply to learn their father's name from the age of 18. This amendment has lead to claims that the number of sperm donors has fallen as men do not wish to be "found".


She acknowledges the argument that reversing the law might seem unfair on the sperm donors who contributed altruistically, but says, "There won't be armies of people tracing their fathers and demanding a share of inheritance. Most of us just need to know who we are.


"Most of the earliest sperm donors seem to have been students supplementing their income. These were bright young men, cheerily creating life – did they not think of the implications for the children they created?"


"You can't help thinking that anyone born via donor conception aged over 18 is part of some lost generation, which the medical profession and the government are hoping will die off without needing to be dealt with. Who could have foreseen that my mother would still be cogent at 96? Most of her peer group are dead, ill or suffering dementia. But I'm still here and I need this information – not just for mental closure, but to fight my cancer."


Alison is undergoing radiotherapy, and if the German bone-marrow donor is willing to help her, the transplant will take place next spring. Yet, she will continue to wonder if there is an 85-year-old man somewhere whose sperm donation helped a desperate couple to have a child in 1946. In which case, his daughter is hoping against hope she will one day find him. There is history to learn and grandchildren to meet. And a family secret that needs to be wiped out as completely as Alison's cancer.

Kiss Me, I [could be] Irish!

Happy St. Patrick's Day!!  After serious severe weather this winter, and torrential rains and river/lowland flooding the past couple weeks, I was so happy to wake up this morning to beautiful blue skies, sunshine, and what is expected to be 65 degree temperatures!!  Based on the large Irish population here in Northeast Ohio, I might just say this welcomed weather is thanks to the luck of the Irish!

However, St. Patrick's Day tends to hold a sentiment that differs from the usual green beer and corned beef for those conceived from anonymous donors (especially those from the by-gone era of secrecy  and no records).  For most of us, we are deeply interested in the ethnic makeup of our biological father, and therefore half the ethnic makeup of ourselves.

Earlier this week I was talking to Stephanie Blessing on the phone about the newfound knowledge that her biological father was/is Jewish.  For adult offspring like Stephanie, who have absolutely no information, this tiny bit of knowledge gives her not only hope in learning more about him, but also a small sense of self that previously was unknown.

Often donor-conceived adults and adoptees are questioned and wonder about about what ethnic group they supposedly resemble.  It becomes a sort of game, matching personal characteristics with those characteristics that are stereotypically associated with certain ethnic/racial groups, and therefore trying to identify some bit of knowledge about our own identity.

Growing up I often wondered what ethnicity my biological father was, and eventually concluded it was most likely that he was of Anglo-Saxon descent since I still had light colored eyes and my complexion was somewhat fairer than my mother's dark Armenian complexion, and most of all I have LOTS of freckles (and no one else in my family has freckles).  The freckles and the hints of red in my dark hair always made me wonder if my father was Irish.  So I used to joke that I might be Irish so I might as well celebrate St. Patty's Day in full force (mostly in college.......).

Now, when I finally learned my donor number in 2008 and subsequently received minimal information about my biological father, I learned that my hunch that he was Anglo-Saxon was confirmed.  His mother was English or of English descent.  However, there was no ethnic group assigned to his father.  So, I will still stand by my stance on March 17th, "Kiss me, I [could be] Irish!!"