Sunday, February 21, 2010

When you have a family history of breast cancer, take this test. Or, Do not pass Go, Go directly to jail.

Did you know that genes can be patented? That's right, ever since 1982 when the U.S. Patent Office let a group of inventors "own" a specific gene. Today more than 20 percent of human genes have been patented in the United States, primarily by private firms and universities.

What does this have to do with adoption?

Plenty, if you are adopted most likely you do not have access to your family medical history. A company called Myriad Genetics of Salt Lake City (in our least favorite state) holds the patent on breast- and ovarian-cancer genes, and they have developed the only test so far which doctors recommend for women with a family history of breast or ovarian cancer to see if you are carrying the discordant gene. You see the problem, right?

If you don't know if you have a family history of breast or ovarian cancer, what do you do? Pop for the test, of course. It's around $3,400 and good luck getting your insurance company to cover it because you say you're adopted. Earlier this month, Myriad reported its profits increased 67 percent, to $35.4 million, for the quarter that ended Dec. 31, according to the Salt Lake Tribune.

There have been complaints aplenty that the patents impede research because scientists are even forbidden to looked at BRCA results with permission. Amazingly enough, in the first lawsuit of its kind, the American Civil Liberties Association, while no friend of adoptee rights, no sirree--and the Public Patent Foundation of Cardozo School of Law argued earlier this month in federal court in New York that patents on these genes are unconstitutional because they restrict research and thus violate free speech.

The lawsuit, Association for Molecular Pathology, et al. v. U.S. Patent and Trademark Office, et al., was filed on behalf of researchers, genetic counselors, women patients, cancer survivors, breast cancer and women's health groups, and scientific associations (ED: too bad it does not include the American Adoption Congress and "women adopted as infants without access to family medical records") representing 150,000 geneticists, pathologists, and laboratory professionals. The lawsuit was filed against the U.S. Patent and Trademark Office, as well as Myriad Genetics and the University of Utah Research Foundation, which hold the patents on the genes, BRCA1 and BRCA2. The lawsuit charges that patents on human genes violate the First Amendment and patent law because genes are "products of nature" and therefore can't be patented. 

All of this reminded me of being in Albany a couple of years ago to lobby for an open-records bil for adoptees. One of my fellow lobbyists was a woman who flew up from another state. She had been born and adopted in New York, and so records were tied up in some dark dank corner of Albany. She talked about having medical tests that might be unnecessary, and the expense, trying to explain to the doltish legislator she was speaking to, Daniel O'Donnell, why this made her feel less than equal to well, say the guy she was talking to. (We've talked about Mr. Daniel O'Donnell of the Albany Assembly before.)
 
O'Donnell (of the Upper West Side of Manhattan) stopped her and said that he would never never as long as he lived, no matter what she or I or anyone in the whole wide world might say, vote for open records for adopted people. She continued on, tears welling up in her eyes. O'Donnell treated her as if she did not matter.

If I'm getting off the track here, excuse me, because every time I read about O'Donnell (and I do read about him now and then), who is a major player in getting gay marriage passed in New York, I see red. While O'Donnell is fighting for the rights of his own group--a right I support, and wrote in favor of years ago in USA Today--he can not see beyond the blinders imposed by his sister, adoptive mother Rosie O'Donnell. He once told another lobbyist that Rosie and he were afraid that if the records were open--and Rosies' adopted children knew the truth of their origins--that their birth mothers would come back and attempt to extort money from her; he told Joyce Bahr of New York's Unsealed Initiative that giving adoptees their original birth records was unconstitutional, the court cases that she showed him to the contrary notwithstanding.

And adopted individuals' need for a health history? Phfft! Not our concern! Apparently we haven't made the case yet, and it does seem to fall on deaf ears, such as O'Donnell's and all the others who oppose our bill or hold it up on committee--it's in the Health Committee in the Senate and Thomas Duane, who chairs that committee is not at all interested in moving it along. He recently referred to birth mothers who might be found as "fair game," as if we were all fearful of the phone call that might open the door to the child we lost. (See sidebar for more on Duane and how to reach him.)

Let's hope U.S. District Judge Robert Sweet in New York decides in favor of not letting a corporation--any corporation--own a human gene. The ruling was stupid in 1982, and stupid it remains.--lorraine
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I don't know what is up with the white space here but I can't get rid of it. 


8 comments :

  1. Thank you for all of the information in this post! Great links, I was always confused about the state of Utah and why there are so many people who place for adoption there, great resources ... just a great writing all around.

    Wondering if you and your readers are aware of this?http://www.change.org/ideas/view/return_adult_adoptees_the_right_to_their_original_birth_certificates_2
    Seems the Obama Administration wants to know what is important to people when it comes to making laws. Every vote counts.
    Thanks for the read!

    ReplyDelete
  2. Kelsey, we had a link posted to the vote on the sidebar...for weeks. Results now on top because supposedly the last day for voting was the 17th.

    And we are not publishing comments that are solely about not supporting gay rights because of people like O'Donnell.

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  3. Good News! Looks like they extended the vote for a full week. 3 more days left (ending on the 24th), and now there are less than 200 votes seperating Return Adult Adoptees and the Death Penalty. So put the call out, you can still vote!

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  4. I will never understand the need to pretend this "anonymity" is for us, the mothers - when the fact is said by th man himself - they are afraid of the birth mothers!

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  5. This really is nothing new. I read the following article when it came out. As a healthcare worker it frightens me to see this happening. Do I dare ask what's next? http://news.nationalgeographic.com/news/2005/10/1013_051013_gene_patent.html

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  6. This is the one that amazes me: http://www.wired.com/magazine/2010/01/st_henrietta/

    ReplyDelete
  7. This link is an example of the exact situation you describe...

    http://www.nationalpost.com/story.html?id=1580145

    Thank you for bringing light to the situation!!!

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  8. Conference Notice:
    Both Lorraine and I have presented at this event before. it has been academic and heavy on adoptive mothers, but I always found the people pleasant and the conference interesting.

    This year it looks like there will be more birthmother participation. I am presenting at this conference on the history of birthmother activism, Marley is presenting on Baby Dumps, and Ann Fessler who wrote "Girls Who Went Away" will present. Adoptee Marianne Novy told me that Lynn Lauber, keynote, is a birthmother, and so are the three people on the plenary Birthmothers Speak, Ann Fessler and Sheila Ganz will show films in progress, and Martha Gelarden will do a presentation Friday evening with her birth son.
    Check it out on the website below.

    *Adoption: Secret Histories, Public Policies*
    A conference sponsored by the Alliance for the Study of Adoption and Culture
    at MIT, Cambridge, MA
    April 29-May 2, 2010
    http://web.me.com/shaslang/ASAC_2010_Conference/

    ReplyDelete

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