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
I don't know what is up with the white space here but I can't get rid of it.