Wednesday, May 25, 2011

Very quick update on my FFDNA test

So before I lose power/wifi in yet another ridiculous midwestern storm (severe storm warnings, loads of lightening and hail, tornado watches issued...luckily the funnel clouds/tornados were all about 15 miles north --- at least for now), I wanted to quick update and say that my kit was received by FTDNA and I'm in batch #414.  My results are expected by 7/20/2011.  So until then, we wait.....

But in the meantime I will do at least a post or two discussing this test more in-depth as well as some interesting information I've come across in my research.

Monday, May 23, 2011

I got my DNA set on you

The poet George Harrison reminded us what a little determination can do when we set out mind to something.
"I got my mind set on you, I got my mind set on you
I got my mind set on you, I got my mind set on you
But it's gonna take money, a whole lotta spending money
It's gonna take plenty of money, to do it right child
It's gonna take time, a whole lotta precious time
It's gonna take patience and time, mmm to do it, to do it
To do it, to do it, to do, to do it, right"
And while as donor-conceived adults our goal is not to "get the girl", that same sense of determination has pushed a growing number of offspring to take a stand --- regardless of time and money involved in our search.  Whether it's Olivia Pratten taking on the province of British Columbia and WINNING (thankfully not in a Charlie Sheen sort of way....), or the less-heroic of our ranks attempting the impossible in other ways, we are fed up and we're doing something about it!!

Last Monday I reported submitting my DNA to the FamilyFinderDNA database.  Today Girl Conceived blogged about her entertaining breakfast of coffee and DNA scrapers (though I sure hope she was not drinking coffee before scraping!!!) for the same test.  Several close DC friends have already received their results from FTDNA, including Stephanie Blessing, Damian Adams, and several others who I will not mention for some privacy reasons.  Elizabeth Marquardt even blogged this afternoon on Family Scholars this recent "outbreak" of DNA tests among offspring.

And to top it off, yesterday a former donor added his information to the AmFOR Donor Offspring Registry with the note that he has added his DNA to the 23andMe database and hopes to find his biological offspring using their "Relative Finder" program (similar to FTDNA's FamilyFinder database).

My first reaction to this is the ironic juxtaposition of our biological fathers' sperm (genetic material used to create a new life) contained in small vials to be removed indefinitely from its roots, and our spit (also genetic material, that is it contains our DNA) contained in small vials with a hope to be reconnected to those very same roots...that were both unceremoniously disposed of in what were likely similar 1mL vials.

My next observation is the fact that this process, these results, this knowledge, is all something that we as donor-conceived adults are posting to the World Wide Web where it will likely be perserved indefinitely (or at least until December 21, 2012!!  You never know, maybe computers won't be able to function beyond the Mayan calendar - flashback Y2K).  Therefore it's something that will eventually become knowledge for the masses.  Knowledge for the infertility industry, for lawmakers, for current and future recipient parents, and for former, current, and future donors.

Regardless of where you live, what the law dictates...anonymity is dissolved.  It was dissolved as soon as some novel teenage offspring had the brilliant idea of looking for their donor on MySpace and then MySpace's successor, Facebook.  It was dissolved as soon as Ryan Kramer traced his donor using FTDNA's Y-DNA test.  And it will be further dissolved as more and more donor-conceived adults submit their DNA to databases such as FTDNA, 23andMe, and more.

What makes these tests so perfect is that unlike traditional paternity tests, the donor does not have to consent to his DNA being used.  It's not, at least not in the legal sense.  But in the ancestral sense his DNA is alive and well in his close relatives.  And it is the genealogical inquiries of those relatives that will drive donors out of their cloak of anonymity once and for all.  Donors cannot control what their 2nd and 3rd cousins do....heck, most likely they don't even know who their 2nd or 3rd cousins are!!!  But for genealogy buffs, not only is their the possibility that they share the same surname (especially the case with Y-DNA tests), but they may even have elaborate family trees discovered and can point you right to the guy who went to X University for medical school, or at least identify family members who lived in the location that you were conceived in at that time.

So former, current, and future donors and recipient parents --- you have been forewarned.  Any promise of anonymity by your clinic or sperm bank, take with a grain of salt.  If you truly never want to know your biological children, DON'T DONATE!!  Parents, if you choose an anonymous donor because you do not want your child to know their biological parent.  DON'T USE A DONOR!!!

Because the donor-conceived children of today and tomorrow are going to have technology on their side.

Thursday, May 19, 2011

BREAKING NEWS: Sperm donor anonymity overturned by B.C. court

The B.C. Supreme Court has struck down provincial legislation that protected the identity of sperm donors. The court also prohibited the future destruction of any records and ordered the province to draw up new legislation in line with the Charter of Rights.

Lawyers for Olivia Pratten had argued that the existing rules discriminated against the children of sperm donors, and the court ruled in Olivia Pratten's favour on Thursday by striking down a section of the B.C. Adoption Act.

In the decision, Justice Elaine Adair wrote that the rights of the child must be protected in sperm donation, much like they are protected in cases of adoption in B.C.

"I conclude, based on the whole of the evidence, that assisted reproduction using an anonymous gamete donor is harmful to the child, and it is not in the best interests of donor offspring," wrote Adair.

"I grant a permanent injunction, in accordance with these reasons, prohibiting the destruction, disposal, redaction or transfer out of B.C. of gamete donor records in British Columbia," she wrote.

The ruling gives the province 15 months to enact conforming changes to the B.C. Adoption Act that are in line with the Charter of Rights.

Adair found the Act was unconstitutional because it treats adopted children differently from children of sperm donors. Adopted children are provided information about their biological parents, whereas the children of donors are not.

'Total win'

Pratten was conceived through sperm donation. The 28-year-old Ontario journalist fought for years to learn her biological father's identity, but was eventually told the doctor legally destroyed the records in the 1990s.

"It is a total win for us. No more anonymity. Donor offspring have been recognized as having the same rights as adoptees in B.C.," said Pratten after the ruling was released.

She then decided to sue the B.C. government on behalf of other children who still have hopes of learning their parentage and to ensure donor records are preserved indefinitely and that children can have access to the records when they turn 19.

Limited effect on fertility clinics

Dr. Albert Yuzpe of Genesis Fertility Clinic said he has no issue with what Pratten has pioneered and the decision is not likely to affect work at his clinic in Surrey, B.C., because 80 per cent of his patients already chose sperm from "known identity" donors.

He also notes Canada has only one sperm bank, based in Toronto, and the majority of sperm comes from American sperm banks. At his clinic he does 600 donor sperm cycles per year, and only one or two involve Canadian donors, he said.

Yuzpe also said it is unclear if the decision would force anonymous American sperm donors to be identified.


UPDATE: Even more articles on Olivia Pratten's groundbreaking win in BC court today

Supreme Court of British Columbia Reasons for Judgment
Olivia Pratten vs: 
* Attorney General of British Columbia
* College of Physicians & Surgeons of British Columbia

POLL: Should the identity of sperm donors be protected?
(CBC. May 19/11)

BC Paternity Decision - Interview with Olivia Pratten
(As it Happens, CBC Radio One. Part 2. May 19/11)

B.C. judge says anonymity for sperm, egg donors is unconstitutional
(By Dene Moore, The Canadian Press. May 19/11)

B.C. judge rules in favour of offspring of anonymous sperm donors
(By Neal Hall, Vancouver Sun. May19/11)

Sperm donor anonymity overturned by B.C. Court
Includes an audio interview with Olivia Pratten
(CBC News. May 19/11)

B.C. court strikes down anonymity for sperm donors
(By Sunny Dhillon. Globe & Mail. May 19/11)

B.C. judge allows 15 months for discriminatory sperm-donor law to be reworked
(By Keith Fraser. The Province. May 19/11)

Wednesday, May 18, 2011

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?? 

Sunday, May 15, 2011

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.

Thursday, May 5, 2011

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 are just a handful:
Best donor/sibling searching tools
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.

Tuesday, May 3, 2011

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.