Lawsuit Filed on Behalf of Medical Associations, Geneticists, Patients and Breast Cancer and Women’s Health Groups
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WASHINGTON – The American Civil Liberties Union and the Public Patent Foundation today asked the U.S. Supreme Court to invalidate patents for genes associated with hereditary breast and ovarian cancer that allow a Utah company to control access to crucial genetic tests that could lead to life-saving treatment.
In July, a divided federal appeals court ruled that companies can obtain patents on the genes but invalidated patents on methods of comparing gene sequences. A federal district court previously had invalidated all of the challenged patents.
The lawsuit against Myriad Genetics and the University of Utah Research Foundation, which hold the patents on the genes, charges that the challenged patents are illegal and restrict both scientific research and patients’ access to medical care and that patents on human genes violate the First Amendment and patent law because genes are “products of nature.”
“We are asking the Court to rule that patent law cannot impede the rights of scientists and doctors to conduct their research and exchange ideas freely,” said Chris Hansen, staff attorney with the ACLU Speech, Privacy and Technology Project. “Something as natural as human DNA cannot be owned by a particular company.”
The patents granted to Myriad give the company the exclusive right to perform diagnostic tests on the BRCA1 and BRCA2 genes and thus to control the diagnostic care provided to hereditary breast and ovarian cancer patients and people at high risk for these diseases. Myriad's monopoly on the BRCA genes allows it to set the terms and cost of testing and makes it impossible for women to access alternate tests or get a comprehensive second opinion about their results. It also allows Myriad to prevent researchers from even looking at the genes without first getting permission from Myriad.
“Nobody ‘invents’ genes, so no one should be able to claim ownership of them,” said Daniel B. Ravicher, executive director of PUBPAT and co-counsel in the lawsuit. “We are not talking about a new drug or a new tool to fight cancer. We are talking about a genetic marker that occurs naturally in the human body. That cannot, and should not, be patented.”
The restrictions on examining the BRCA genes can have devastating results. Kathleen Maxian of Buffalo, N.Y. is suffering from late-stage ovarian cancer that she believes could have been prevented. Her sister, who is a breast cancer survivor, obtained a test from Myriad that did not look for all known genetic mutations associated with cancer and was told she was negative for mutations. Years later her sister learned that she did, in fact, have a BRCA genetic mutation -- information that Maxian could have relied on to seek preventive surgery. Numerous labs across the country have stated that they are capable of providing this comprehensive screening and would do so were it not for the patents.
“These two genes are connected to cancers that kill women every day,” said Sandra Park, staff attorney with the ACLU Women’s Rights Project. “Granting a monopoly on them undermines the quality of medical care and research that breast and ovarian cancer patients need and deserve.”
Lisbeth Ceriani, a breast cancer survivor and plaintiff in the case, was faced with having to pay for Myriad’s $4,000 test to determine if she carried a genetic mutation associated with hereditary ovarian cancer because Myriad had refused to enter into a contract with her insurance company. She was forced to wait 18 months before she was able to obtain the test through a grant, at which point she learned she did indeed carry the mutation.
“Nobody should have to choose between having to empty their bank accounts or taking a gamble with their life,” said Ceriani. “It’s absurd to think that a company has the right to own a piece of my body.”
The lawsuit was brought by researchers, genetic counselors, patients, breast cancer and women's health groups, and medical professional associations representing 150,000 geneticists, pathologists and laboratory professionals. Attorneys on the case include Hansen, Park, Aden Fine, Lenora Lapidus and Steven R. Shapiro of the ACLU; and Ravicher and Sabrina Hassan of PUBPAT.
For more information on this case, please visit www.aclu.org/brca
The petition can be viewed here: www.aclu.org/free-speech-womens-rights/association-molecular-pathology-v-myriad-genetics-inc-petition-writ
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ALEXANDRIA, Va. – A federal judge in Virginia ruled today that the government can collect the private records of three Twitter users as part of its investigation related to WikiLeaks. The court also refused to unseal or publicly list all orders and other court documents relating to the parties in the case, including orders that may have been sent to other companies besides Twitter.
The American Civil Liberties Union and the Electronic Frontier Foundation represent Birgitta Jonsdottir, an Icelandic parliamentarian and one of the Twitter users whose records were sought by the government.
“Internet users don’t automatically give up their rights to privacy and free speech when they use services like Twitter,” said Aden Fine, staff attorney for the ACLU Speech, Privacy and Technology Project. “The government shouldn’t be able to get this kind of private information without a warrant, and they certainly shouldn’t be able to do so in secret. An open court system is a fundamental part of our democracy, and the very existence of court documents should not be hidden from the public.”
Today’s decision was an appeal of rulings made by a magistrate judge.
"With this decision, the court is telling all users of online tools hosted in the U.S. that the U.S. government will have secret access to their data,” said Jonsdottir. "People around the world will take note, and since they can easily move their data to companies who host it in locations that better protect their privacy than the U.S. does, I expect that many will do so. I am very disappointed in today's ruling because it is a huge backward step for the United States’ legacy of freedom of expression and the right to privacy."
Today’s ruling and other information about the case are available online at:
www.aclu.org/free-speech/twitter-wikileaks-court-order
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November 10, 2011
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The ACLU of Rhode Island is offering to the public a free 36-page booklet entitled “Your Rights to Workplace Privacy in Rhode Island.” As its title indicates, the booklet answers commonly asked questions about employees’ privacy rights in the state.
Among other things, the handbook answers such questions as:
• Can my employer require me to take a drug test?
• Are there any limits on the types of questions I can be asked when I apply for a job?
• Can my employer monitor my phone or private conversations?
• Can my employer tell me how to dress or wear my hair on the job?
• Does my employer have the right to physically search me or my belongings at the workplace?
While the ACLU, as a general rule, deals with civil liberties complaints only against the government, it has had a long-standing interest and involvement in issues relating to privacy in the workplace.
The booklet is available online at the RI ACLU’s website, www.riaclu.org. Free copies of the booklet are also available by calling the ACLU at 831-7171 or writing the ACLU office at 128 Dorrance Street, Suite 220, Providence RI 02903.
Top officials Are Using Personal Email to Discuss Facebook and City of Newark refuses to Release Records
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NEWARK – The Secondary Parent Council (SPC) and other organizations seeking information about the $100 million pledge by Facebook CEO Mark Zuckerberg continue to encounter roadblocks by the City of Newark and other public officials who are using personal email accounts to discuss the donation.
“The bottom line is that folks on the ground in Newark want basic information about the terms of the gift, such as whether it included any preconditions” said Deborah Jacobs, American Civil Liberties of New Jersey (ACLU-NJ) executive director. “But between the use of personal email accounts and unjust denials of open records requests, they’ve learned practically nothing.”
Recent developments include:
- The City of Newark has asked the court to dismiss an open records lawsuit filed by the ACLU-NJ on behalf of the SPC, a Newark group of parents and grandparents that requested public records about the Facebook donation. The City claimed in its response that the records are protected by mayoral executive privilege (something allowed only to the Governor in New Jersey), that Newark Mayor Cory Booker was not acting in official capacity, that the communications were exempt because they were deliberative and that the mayor has a general need for privacy in executing his functions.
- The City’s response came days after the ACLU-NJ discovered that top officials, including Mayor Booker and Department of Education Commissioner Christopher Cerf have used their personal email accounts to discuss the Facebook pledge. The ACLU-NJ made the discovery after reviewing documents released in response to an open records request made by one of its clients, the Education Law Center (ELC).
- In July, the ELC filed an open records request with the state Department of Education (DOE) seeking any emails, documents or other correspondence between the agency and the Foundation for Newark’s Future, a nonprofit established to raise matching funds and administer the money. The DOE turned over documents and emails, which included email exchanges between Cerf and Booker on their personal accounts.
The ACLU-NJ emailed a letter to the DOE asking that it search the personal email accounts of Cerf and Assistant Commissioner Andrew Smarick for public records. By law, public business conducted on a personal email account is a public record. Public officials should not be allowed to conduct business on private email accounts because it lessens accountability when the email is not on the government agency’s computer system.
ELC is one of several organizations that have sought transparency and records about the Facebook money. The NAACP and SPC have also filed open records requests with the City of Newark, the Newark Public Schools and the DOE. Although the DOE recently provided some records, not one of the agencies has produced any written agreement or contract memorializing the terms of the gift.
Laura Baker, a representative of the SPC, said she is dismayed by the City of Newark’s lack of response.
“I’m extremely disappointed that the city has once again refused to turn over records,” said Baker. “As parents and grandparents, we just wanted to get a better idea about how our leaders are making decisions that affect our children.”
For more information and to view the documents, visit www.aclu-nj.org/facebook.
Susan Herman, ACLU President, is the author of Taking Liberties: The War on Terror and the Erosion of American Democracy. In this eye-opening work, Herman takes a hard look at the human and social costs of the War on Terror. A decade after 9/11, it is far from clear that the government's hastily adopted antiterrorist tactics — such as the Patriot Act — are keeping us safe, but it is increasingly clear that these emergency measures in fact have the potential to ravage our lives — and have already done just that to countless Americans.
For example,
More about Taking Liberties:
"Taking Liberties offers a compelling case that the basic constitutional protections most Americans take for granted, including the rights to free speech, a fair trial and due process, as well as freedom from unreasonable searches and seizures, were seriously compromised after 9/11 as a result of the government's well-meaning but ill-conceived efforts to safeguard the country against another attack. . . [P]ersuasively fair and reasonable . . . A valuable contribution to the growing body of literature regarding the War on Terror's impact on our constitutional rights." — Kirkus Reviews
Read our 9/11 blog series » More about the book » -->Vote to protect motorists' privacy is first in state, maybe nationwide
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BOSTON -- Last night, the Brookline Board of Selectmen voted unanimously, 5-0, to oppose acceptance of a state grant that would have funded a police surveillance program with data sharing requirements that put Brookline residents at risk for serious privacy violations. This is the first time any community in Massachusetts, and possibly nationwide, has rejected state funding for automatic license plate recognition (ALPR) technology because of privacy concerns.
"This is a substantial victory for privacy advocates and for ordinary people in Brookline who don't want their travel information to be shared broadly with the state and federal governments," said Kade Crockford, privacy rights coordinator for the American Civil Liberties Union of Massachusetts.
The Board will now consider a proposal from the Chief of Police to buy an ALPR system with town funds, allowing the Town and the Police Department to determine who has access to the travel data, thereby protecting the civil liberties of Brookline residents.
ALPR technology automates the collection of license plate data, enabling police to capture thousands of plates, and their locations, every hour. The machine converts license plate numbers into machine-readable text, and searches databases for wanted individuals, those with expired registrations or licenses, and more. The technology documents the GPS location information and time and date where and when the image was captured, enabling automated police tracking of motorists. With very narrow limits imposed on its use, the technology can be deployed without negatively affecting civil liberties. Unfortunately, use of the machines is spreading in Massachusetts and nationwide, entirely without these protections, becoming another mechanism enabling the tracking of ordinary people.
"The Brookline Board of Selectmen and the Chief of Police deserve credit for listening to their constituents and coming down on the right side of this issue, preserving those liberties that we hold dear," said Carol Rose, executive director of the ACLU of Massachusetts. "The ACLU of Massachusetts thanks the Board and the Chief, and looks forward to working with them and concerned community members to arrive at a conclusion that protects the privacy rights of ordinary people in Brookline."
For more information about ALPRs, go to:
