Friday, April 04, 2008

Our genetic hardware

More than a century after Mendel's laws of inheritance were rediscovered, it is ridiculous to remind educated people that our traits are determined by - surprise, surprise - our genes.
However, it seems necessary because some folks just refuse to ackkowledge the limitations of our genetic hardware. So they overestimate the environmental factors or, to put it more bluntly, seek whom to blame when children don't turn out to be exactly what society and their loving parents want.
Yesterday, April 2, was World Autism Awareness day and CNN viewers received a median lethal dose of Jenny McCarthy (if you don't know who she is, then (1) you are lucky and (2) see my Jan. 14 post). However, CNN managed to present some good stuff as well. The quote below is from their story Autistic children linked to same sperm donor, by Randi Kaye. It is a must-read for the above mentioned Ms. McCarthy, for Sen. John McCain and all others who blame autism on vaccines, TV, the hole in the ozone layer or alien abductions. I learned about the story from Aspergian, who feels (to say the least) offended because children with his phenotype are not wanted.

"Dylan loves Italian music and draws pictures... He also happens to be autistic.
Gwenyth Jackaway, Dylan's mother, is a professor at New York's Fordham University. She's single but had always wanted to have a child. So she contacted California Cryobank, one of the largest sperm donor banks in the country.
Cryobank doesn't reveal the identities of donors but allows people to choose based on the traits they'd like their child to have. Jackaway decided on "Donor X" because he appeared philosophical and intelligent on paper...
What she couldn't know then is that her son would have
autism. So she started to wonder whether Donor X might carry a gene that could have contributed.
The cause or causes of autism are not known and are hotly debated. Most experts believe that genetics are a component...
Researchers have found some genetic areas associated with autism, but it could take years before the gene or genes that cause autism or contribute to it will be determined.
Until then... there's no way to screen for those genes and prevent them from being passed to a child...
Jackaway says she went into a period of mourning when Dylan's autism was diagnosed at age 2.
"When you're handed a diagnosis of some sort of developmental disorder, you have to let go of the child you thought you were going to have," Jackaway said. "There's a sense of loss of the child, a grieving process. There's denial, there's rage, and then there's the tremendous sadness, and hopefully you get to a place of accepting."
Jackaway says she had to accept that "I don't have that child I thought I was going to have. But I have this child instead, who's right here in front of me."
Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.
Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola's son, Joseph, 2, exhibiting some of the same behavior as her son...
"She told me that she saw characteristics of autism, and it was very upsetting to me at that time," Pergola said... She was afraid because she had an image of autism in her head and believed her son would be "in the corner and rocking and not talking."
She says Jackaway reassured her that wouldn't be the case.
One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism...
In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.
But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?
"I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan," Jackaway said. "I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are."...

Since the discovery of autism in some of the families that used Donor X, Cryobank had this to say about his samples:
"... per CCB policy, the donor's samples were removed from the general catalog. These vials may only be sold to a client who has previously used specimens of this donor and is interested in ordering additional specimens. In this case the client is made aware of the new medical information and potential issues ..."
The families don't blame the sperm bank. In fact, Theresa Pergola says she's still uncertain about an autism screening process, if and when it ever becomes available..."


Ettina said...

I really wish they wouldn't remove his sperm. What I'd like is if they kept his sperm with a note on the file that he has produced a large number of autistic children, and let their clients chose him if they'd be willing to have an autistic child (or even want to). It gives me an interesting dilemma, as a person considering sperm donation. I hope to conceive an autistic child by sperm donation. If I do manage to get an autistic kid that way, I probably won't tell the sperm bank because they might remove his sperm.

Maya M said...

While writing this post, I was actually thinking of you and this post of yours:
My opinion is that you may somewhat prematurely reject the idea of having a typical family. You write that you aren't intersted in sex but no young girl really is (I am always amused when male writers describe the pain accompanying the woman's first sexual intercourse as "mild"). You of course have history of abuse complicating the matters much, so I cannot put myself in your shoes. Still, perhaps you might consider that the best way to have an autistic partner in reproduction is seeing him face to face, in real life...
I agree that the bank should keep Donor X's sperm, just in case some woman prefers an autistic donor. I also hope that this man, who is likely to live alone, is aware of the news and now knows about his babies and their mothers.