Your Genes, Your Rights
Posted August 25th, 2011 by ACLUBy Sandra Park, Staff Attorney, ACLU Women’s Rights Project
When you hear about patents on human genes, women’s rights might not immediately come to mind. Yet, a woman’s right to access medical care, make informed medical decisions, and benefit from scientific research is at the core of this issue.
For the past two decades, the United States Patent Office has granted patents on human genes once they are “isolated,” or removed, from the body and cell. BRCA1 and BRCA2, which are associated with hereditary breast and ovarian cancer, are just two of the estimated 20 percent of human genes that have been patented. Women and men who have certain mutations on these genes are much more likely to experience cancer in their lifetimes. For that reason, physicians and genetic counselors recommend genetic testing for some patients with a significant family or personal history of breast or ovarian cancers, so that they can more fully understand their risk of developing future cancers and to help inform medical decisions.
However, because a company called Myriad Genetics controls the patents on the BRCA1 and BRCA2 genes, there is only one laboratory in the United States that provides BRCA sequencing — Myriad’s. The human cost of patents on genes has the potential to be devastating for women and their families.
Myriad’s patents enable it to threaten other laboratories that offer testing. Its monopoly has barred patients from accessing alternate tests that might more effectively detect mutations or comprehensive second opinions about their results. It also allows Myriad to charge a high price for its tests, a price that has increased as the cost of genetic testing, in general, has dramatically decreased. Furthermore, Myriad’s refusal to share the data it has collected on BRCA1 and BRCA2 mutations raises serious questions about whether it is undermining research and scientific progress.
The American Civil Liberties Union and Public Patent Foundation filed a lawsuit challenging these patents on behalf of pathologists, geneticists, women’s health organizations and patients. Our lawsuit challenges the government’s policy of gene patenting, and its outcome could have far-reaching effects on other patents that have been issued, including on genes relating to ovarian cancer, Alzheimer’s disease, and muscular dystrophy.
Myriad’s patents are invalid because they cover natural phenomena, which the Supreme Court long has shielded from patenting. The federal district court agreed, and in a landmark ruling concluded, for the first time, that genes are not patentable subject matter because they are products of nature. On appeal, a divided Federal Circuit partially reversed the district court’s ruling, holding that companies can obtain patents on the genes but cannot patent the basic process of comparing genetic sequences.
This decision is extremely problematic for women’s health. By allowing companies to block access to alternate tests and second opinions, charge thousands of dollars for their tests, and chill scientific research, gene patents are threatening women’s – and all patients’ – rights.
No corporation should be able to claim ownership of a woman’s own genetic information. We are considering next steps in the litigation, but to learn more about what you can do, click here.
This blogpost is part of a multi-organizational #HERvotes blog carnival.
1 Comment
August 30, 2011 at 11:22 pm by LindaHello…I spotted this issue by accident and just had to tell others what I found out about this testing. It is true there is only one lab and you have to have about $1000. to do the testing if I remember right. It was expensive and that NBCCEDP breast and ovarian med. ins. in GA. which suppose to be full coverage on cancer and non-cancerous expenses DOES NOT cover the expense, which is normally or through my experience ordered IMMEDIATELY in 2005 yet has not ocurred. The maddening issue to me was that the state in which the test is given the U.S. CDC, ACS…the National “funders” of this 50-state program for ins. …SHOULD BE EQUAL RIGHT? Well, the only women in the U.S. under my ins. plan who can take this test and are covered are only the women on this govt. med. program who LIVE IN THAT PARTICULAR STATE, I suppose all the other women in the other 49 states are NOT COVERED BY INS. when ordered to take this test…and if you are in this govt. med. ins. women’s heath program you definitely do not have the money to afford this test…YET, isn’t it strange that the women in the one state that does this testing in this one and only lab…that they can get these genetic tests done yet the women in my state and probably the other 48 states are not covered with ins. to take this breast cancer genetic test. It’s as if that company that does the testing has worked with their CDC and ACS …regional offices…govt. regional agencies to partner for their women to be tested yet the women of the other 49 states are SIMPLY LEFT CLUELESS that one may not get the care though in the same national ins. health plan. Georgia women are not covered under NBCCEDP med. ins. the same as women in other states. Most women do not even know of this breast and cervical cancer medicaid program at all. There is far more I need to tell women but not here…not now. My knowledge of women’s hormones and the deprivation of them by the Western Medical physicians and keeping secrets by not telling the women GLOBALLY that there are essential hormones which need to be balanced in a women’s bodies yet doctors do not bother to mention them…is the same thing as lying to the world’s women…when not expressing to them that they need these six levels checked and custom leveled to remain the same as they were in their 20′s. PROGESTERONE, ESTRADIOL, TESTOSTERONE,freeT4, and freeT3…at least keep these levels in balance according to their own natural levels…testing initially in their 20′s and maintaining these levels as long as possible through menapause, cancer or anything because w/o them they will grow older faster, not have their optimal energy levels or optimal brain functions, besides a libido, because testosterone is a brain food…women need all three types of the sex hormones mentioned here or their best possible quality of life shall never be maintained. Please share this with as many women as possible. I am talking about the quality of life for millions of women here. I do not get a PhD but I know more than 95% of our American physicians know about women’s hormones. The time they study women’s hormones for the avg. medical degree those hours can ge counted on ONE HAND. Horrendously, women are at the mercy of mostly male physicians who definitely do not know or could not care less…to know more about women’s hormones. Yet, when they are robbed of us from chemotherapeutic highly toxic fatal drugs…overnight…stripped of these hormones, progesterone, testosterone and estradiol …from that moment forward…without even small dosages of these essential systemically functioning hormones…are bodies are forever put into an unhealthy permanent negative downward spiraling existence. Cancer patients have infinite serious medical and non-medical debilitating effects of cancer and it’s treatments anyway…at least cancer patients SHOULD BE MADE AWARE OF WHAT TRULY IS or MIGHT VERY LIKELY …High Risk…come to pass with their bodies,their existences,their welfare and that of their children and all their families and friends. By denying women of their health, their health rights, men always about the bottom line…women dying daily because they do not know where to go to claim the basic right of survival. Always remember if your health is in danger…do not allow your state of survival to become that which hangs by a tiny thread during months of frantic contemplation, because health insurance stripped from you. Let nothing or NO ONE deny you your right to live and not only survive …but THRIVE! Remember this always women…at least those in the U.S….I was never given these words, so I shall tell the members of my gender this one more SIGNIFICANTLY IMPORTANT yet highly secretive fact…if cancer or something else is threatening your and your children’s very existence and insurance you may be without…go to…one of these four places that can actually save your life if you have something like breast cancer… your health dept., the nearest ER…hopefully one at a teaching hosp., possibly the CDC and the ACS…anyone reading this and they are female remember this acronym BCCEDP…if you or someone you know has breast or ovarian cancer this BCCEDP could save your life I know because…I… after seven mths.of walking this earth riddled with tumors…should definitely not still be drawing a breathe…only the boss upstairs knows why I am not and I believe it has to do with expressing as much and as often as I can what I have discovered within the legal and medical shady worlds of today. I do not know how much longer I have so I need to tell women, warn them about the insights of high importance that other females could benefit from, esp. is I tell them my story. I have been told to publish it and I truly should. Actually, it’d make a hell of a movie too probably. But it is difficult to share …but there is one more thing I have to tell you. I CAN GENUINELY TELL YOU WOMEN and WARN YOU ALL…of HOW I ACQUIRED BREAST CANCER. I KNOW EXACTLY FOR A FACT WHAT HAPPENED. If anyone wants to know maybe I should start a medical website and tell others. I want to know if anyone is listening …so you all who truly want to know how I did get the big C…let me know. I seriously need to become a speaker and advocate for the health and welfare of women in this country. I do not even know if anyone is truly seriously consuming my words or I am wasting my time. Systemically oppressed by the judicial system…abuse and neglect…I truly have alot to share but I am tired of others not heeding my words…well many do take me very seriously now. I am no expert but unfortunately I am on my second set of nine lives with truly unique enlightening stories to share…and I should before it really is too late …I know he did not put me through the perfect storm without a reason. I can better the lives of millions of other women plus children, families if given the chance to share my experiences. Stripped of all though it truly is difficult to go on. I have been vague, …I could not possibly tell you the whole story here, so though this is lengthy it is a tiny Reader’s Digest edition of a five decade miraculous journey…I am still here for the welfare of those like who I pray read this.
Guard Always Your Peace OF Mind,
Letting No One Or Nothing
Steal It From You,
Because It Is Far Too Precious,
And Priceless A Treasure
To Ever Allow Or Afford It’s Loss.
– a widow
Linda
678-491-6759 If it’s truly needed. Take care
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