A Sweet Decision May Foretell the Ending of Patents on our DNA

A federal judge in Manhattan on Monday (3/29/10) struck own patents on two human genes related to breast and ovarian cancer, saying that the patents--though granted for decades--were "improperly granted" because they violated a "law of nature." Hallelujah. A law violating a "law of nature"? Hmm, maybe I can think of another law that violates a "law of nature." Let us think.

In a 152-page decision, Judge Robert W. Sweet of the U.S. District Court said pointed out that the whole concept of patenting a gene was no more than a "lawyer's trick," designed to circumvent the prohibition of the direct patenting of our DNA. As a result of Sweet's (we do love this guy's name) decision, seven patents were declared invalid--patents on the genes BRCA 1 and BRCA 2, whose mutations have been linked to breast and ovarian cancer, making this decision of particular interest to women.

The whole idea of patenting genes is nuts. Genes come out of nature, they were not developed in a laboratory by a modern day Dr. Frakenstein. With the patents, Myriad Genetics (and the University of Utah Research Foundation), had developed the only test to determine if individuals were carrying mutations of the genes linked to a high incidence of breast and ovarian cancers. We previously wrote about the impact of these patents on adopted people in February, noting that adoptees with no access to their family medical history were at a particular disadvantage in deciding whether or not such an expensive procedure (approximately $3,400) might be necessary.

A group of women, supported by the American Civil Liberties Union and the Public Patent Foundation at the Benjamin N. Cardozo School of Law in New York, brought the lawsuit, claiming that the patents stifled research, kept prices high and prevented women from getting a second opinion. (We do wish adopted individuals had been part of the lawsuit, because the decision might have been a wedge for the courts to consider the unjust impact of sealed original birth certificates and adoption files.) Myriad Genetics offered the only test, and no other could be developed as the company held the sole right to work with the genes in question. According to The New York Times, many in the patent industry believed the judge would uphold the patents. Quelle surprise!

Every now and then a judge come along who comes out with a decision that smacks of so much common sense backed by a simple "law of nature" that it takes your breath away, considering all the inane and unjust laws on the books.

Decades ago, in the late Seventies, adoption reformer Florence Fisher thought we could dispatch closed adoption and birth records in every state of the union with a single Supreme Court decision. It would, we hoped, wipe all the crazy-quilt identity secrecy laws off the books and return honor and identity to all adoptees. Florence's organization, the Adoptees Liberty Movement Association (familiarly known as ALMA) brought a class-action lawsuit against New York's sealed adoption records laws. The lawsuit claimed that the law violated rights found in the First, Thirteenth and Fourteenth Amendments: the right to knowledge of their natural parents, a right the Supreme Court had long recognized as within the protection of the First Amendment; the right not to be confined or controlled not only by slavery, but by "badges or incidents of slavery", contained in the Thirteenth Amendment;" and the right to privacy--which included the right to knowledge of one's origins--in the Fourteenth Amendment. (For a fuller explanation of the lawsuit, see E. Wayne Carp's Family Matters.)

Florence found a Constitutional lawyer, Cyril Means, to draft the lawsuit, funded the court case, and forward we marched, thinking we really thought we had a shot at getting the identity-stripping laws off the books and into the dark history of adoption. Certainly the court could not fail to see the merits of our argument. No such luck. The idea that adoption trumped all the rights of the individual held sway in court then, holds sway in most state legislatures today. ALMA's case was dismissed in the U.S. District Court for the Southern District of New York; and dismissed on appeal by one Judge James L. Oakes. I remember talked to Florence that night, both of us low and full of despair.

Oakes was wrong; his dismissal an abomination, as surely as the Dred Scott and Plessy V. Ferguson decisions. I pray that the time comes in my lifetime that someone will file another such court case, and that the winds of change have blown enough so that some judge, perhaps one as sensible and ethical and far-seeing as Judge Sweet can see that the time for true justice has come. Then we need not be squabbling about tenets in proposed legislation that we find reprehensible, then we need not be fighting amongst ourselves at all. Then we shall all be free.--lorraine

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