August, 27 2009, 11:37am EDT
For Immediate Release
Contact:
Maria Archuleta, (212) 519-7808 or Rachel Myers, (212) 549-2689 or 2666; media@aclu.org
AMA, March of Dimes and Others Support ACLU Challenge to Patents on Breast Cancer Genes
Briefs Filed in Support of ACLU and PUBPAT Motion to Declare Patents Unconstitutional
NEW YORK
The
American Civil Liberties Union and the Public Patent Foundation
(PUBPAT), a not-for-profit organization affiliated with Benjamin N.
Cardozo School of Law, filed a motion asking a federal court to rule
that patents on two human genes associated with breast and ovarian
cancer are unconstitutional and invalid. Several major organizations,
including the American Medical Association (AMA), the March of Dimes
and the American Society for Human Genetics (ASHG), are filing
friend-of-the-court briefs in support of the motion for summary
judgment. The groups charge that the patents stifle diagnostic testing
and research that could lead to cures and that they limit women's
options regarding their medical care.
"When you patent genes, you are
really patenting knowledge," said Chris Hansen, an attorney with the
ACLU. "Granting patents on human genes limits scientific research,
learning and the free flow of information. We hope the court rules soon
that patents are meant to protect inventions, not things that exist in
nature like genes in the human body."
The lawsuit, Association for Molecular Pathology, et al. v. U.S. Patent and Trademark Office, et al.,
was originally filed on May 12 in the U.S. District Court for the
Southern District of New York on behalf of breast cancer and women's
health groups, individual women and scientific associations
representing approximately 150,000 researchers, 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 BRCA genes. The
lawsuit charges that patents on human genes violate the First Amendment
and patent law because genes are "products of nature."
"Human genes are products of nature
and patents on them should never have been granted in the first place,"
said Daniel B. Ravicher, Executive Director of PUBPAT and co-counsel in
the lawsuit. "There is something fundamentally wrong with companies
being able to own the rights to a piece of the human genome. Genes are
not inventions, and patenting genetic sequences is like patenting
blood, air or water."
Mutations along the genes, known as
BRCA1 and BRCA2, are responsible for most cases of hereditary breast
and ovarian cancers. Many women with a history of breast and ovarian
cancer in their families opt to undergo genetic testing to determine if
they have the mutations on their BRCA genes that put them at increased
risk for these diseases. This information is critical in helping these
women decide on a plan of treatment or prevention, including increased
surveillance or preventive mastectomies or ovary removal.
The patents granted to Myriad give
the company the exclusive right to perform diagnostic tests on the
BRCA1 and BRCA2 genes and to prevent any researcher from even looking
at the genes without first getting permission from Myriad. Myriad's
monopoly on the BRCA genes makes it impossible for women to access
alternate tests or get a second opinion about their results and allows
Myriad to charge a high rate for their tests.
"The AMA is concerned that medical
patents on genes could harm patients' access to care," said Rebecca
Patchin, M.D, AMA Board Chair. "Physicians should not be stifled in
what care they can provide because someone has patented a part of human
biology. These patents are too broad and should be reined in so that no
patient is denied care."
Dr. Edward McCabe of UCLA, President
of ASHG, said, "The American Society of Human Genetics includes
thousands of members who do basic research as well as those who are
involved in clinical and patient care. The deterrents presented by the
patenting and exclusive licensing of BRCA genes continue to cause
problems in many laboratories. ASHG is therefore a party to the amicus
brief with other large and representative medical and research
organizations."
Because the ACLU's lawsuit
challenges the whole notion of gene patenting, its outcome could have
far reaching effects beyond the patents on the BRCA genes.
Approximately 20 percent of all human genes are patented, including
genes associated with Alzheimer's disease, muscular dystrophy, colon
cancer, asthma and many other illnesses.
"Every baby deserves a healthy start
in life and patenting genes stifles research and will slow, or may even
prevent, the March of Dimes from realizing that goal," said Alan R.
Fleischman, M.D., March of Dimes Medical Director. "The 540,000
American babies who face life long health challenges such as learning
disabilities, cerebral palsy, blindness and many other diseases because
they were born too soon are relying on genetic research to find a way
to prevent preterm birth and birth defects."
Nobel Prize winner Sir John Sulston,
Chair of the Institute for Science, Ethics and Innovation at the
University of Manchester, who supports the ACLU's lawsuit, said,
"Patents on human genes are harmful to the practice of science and a
disincentive to further research on those genes. Patents on genes
inhibit access to the most basic information and discourage scientific
communication and data sharing. Free sharing of this information is
vital to understanding the role of genetic variations in human disease."
Attorneys on the case include Hansen
and Aden Fine of the ACLU First Amendment Working Group; Lenora Lapidus
and Sandra Park of the ACLU Women's Rights Project; and Ravicher of
PUBPAT. Tania Simoncelli, the ACLU's science advisor, provides expert
guidance on the case.
More information about the case,
including an ACLU video featuring breast cancer patients, plaintiff and
supporter statements and declarations, the motion for summary judgment
and the legal complaint, can be found online at: www.aclu.org/brca
The American Civil Liberties Union was founded in 1920 and is our nation's guardian of liberty. The ACLU works in the courts, legislatures and communities to defend and preserve the individual rights and liberties guaranteed to all people in this country by the Constitution and laws of the United States.
(212) 549-2666LATEST NEWS
Indigenous Brazilians Mobilize for Land Demarcation, Tribal Rights
Participants in the 20th Free Land Camp demanded that leftist Brazilian President Luiz Inácio Lula da Silva deliver on his promises to Indigenous people.
Apr 26, 2024
Thousands of people rallied this week in BrasÃlia for the 20th annual Free Land Camp—the largest gathering of Indigenous people in Brazil—where participants demanded that President Luiz Inácio Lula da Silva's administration safeguard their lands and cultural rights
Organized by the Association of Brazil's Indigenous Peoples (APIB), the five-day Free Land Camp—in Portuguese, Acampamento Terra Livre (ATL)—wrapped up Friday after a week of solidarity and action. Activities included rallies and marches; events commemorating slain Indigenous activists; and plenary sessions on the climate emergency, education, mental health, and more.
Some participants criticized Lula—who was notably absent from this year's ATL after attending the previous two camps—for what they said was his failure to fulfill campaign promises to Indigenous Brazilians—although attendees also acknowledged that his administration has taken major steps toward tackling illegal resource extraction and demarcating tribal lands.
Two big issues at this year's ATL—whose theme was "Our Existence is Ancestral: We Have Always Been Here!"—were the demarcation of Indigenous lands and opposition to proposed Amazon megaprojects, especially the plan to build the EF-170 railway through the heart of the imperiled rainforest in order to boost mining, logging, agribusiness, and other resource extraction and exploitation.
Last year, Brazilian lawmakers overruled Lula's partial veto of the highly contentious "Marco Temporal" law, which effectively paused demarcations and potentially opened more Indigenous lands to exploitation.
Demarcation confers legal protections against the illegal logging, mining, and ranching that have plagued rural Brazil for generations. On April 19—Indigenous Peoples Day in Brazil—Lula touted his government's demarcation of Aldeia Velha, land of the Pataxó people, in the northeastern state of Bahia, as well as the territory of the Karajá people in Cacique Fontoura, Mato Grosso.
Lula has acknowledged that his administration is falling short of its own demarcation pledges to Indigenous people and has promised to do more.
Alessandra Korap Munduruku, a member of the Munduruku people and a 2023 winner of the prestigious Goldman Environmental Prize, criticized the demarcation delay.
"Twenty years of resistance struggle by the Terra Livre camp. For 20 years we've been coming to BrasÃlia, occupying and seeking our rights," she said. "This year, we're waiting for the government to demarcate all our lands. But the government is letting the [state] governors decide for us."
"This is not what we expect. It's not the governor's decision to make. It's the federal government's," Korap Munduruku added. "This is written in the Constitution, and we see that we are being used."
Brazilian and international agribusiness interests, including commodity traders like U.S.-based Cargill, are pushing Lula's administration to proceed with EF-170—commonly called the Ferrogrão—over the objections of Indigenous peoples. Kayapó leader Doto Takak-Ire warned last year that the Ferrogrão threatens the survival of no less than 48 native peoples, calling the project "the railway of Indigenous genocide."
Earlier this year, Brazilian Transport Minister Renan Filho said that building the Ferrogrão is a top administration priority, sparking widespread disappointment and anger among the Kayapó and other Indigenous people who say they'll be adversely affected by the railway.
ATL participants on Thursday led a "train of death" through BrasÃlia's Esplanade of Ministries, a greenway bisecting numerous government buildings, to draw attention to the project's perils.
"Ferrogrão is the train of death, of deforestation," Korap Munduruku said Thursday.
"The railroad is not going to carry people, as they claim, but grain production of international companies that are financing this project," she continued. "It's a project that will affect not only Indigenous people, but also traditional communities and the people who live in the towns alongside its route."
"In addition, it is a project that will affect people all over the world because it would exacerbate climate change with the massive deforestation it would cause," Korap Munduruku added.
APIB executive coordinator Kleber Karipuna said the government did not adequately consult Indigenous peoples when planning the Ferrogrão.
"Hearings have only been held in cities, none in Indigenous villages," the Karipuna tribal leader said. "Once again, we demand that the protocols for consulting Indigenous peoples be respected. Additionally, the absence of a consultation protocol should not be used as an excuse to deny consultation of peoples affected by the project."
Takakpe Tapayuna Metuktire of the Raoni Institute, which promotes Indigenous rights and sustainability, warned that "Ferrogrão represents the death of kilometers and kilometers of forest."
"While we should be thinking about how to preserve what remains and think about alternative infrastructure projects that respect our rights, nature, and Indigenous and traditional peoples," Tapayuna Metuktire asserted. "We are fighting to prevent yet another project of death and destruction from prevailing in the Amazon. With Ferrogrão all that will be left is scorched earth."
Keep ReadingShow Less
UN Warns of 'Catastrophic' Imminent Escalation in Sudan
Warring factions in North Darfur state must "avoid locating military installations within or near densely populated areas, including towns and camps for internally displaced people," said one U.N. official.
Apr 26, 2024
The United Nations' top humanitarian affairs officials on Friday called for an immediate deescalation of hostilities in Sudan, where rival factions in the military government have been fighting for a year and where an attack on the city of El Fasher is reportedly imminent.
About 800,000 people in the city, the capital of North Darfur state, are in "extreme and immediate danger," U.N. aid operations director, Edem Wosornu, told the U.N. Security Council earlier this week, as she reported that clashes between the Rapid Support Forces (RSF), a paramilitary group, and the Sudanese Armed Forces (SAF) are nearing El Fasher.
Fighting between the two groups has intensified in recent weeks, forcibly displacing an estimated 40,000 people.
The U.N. Office for the Coordination of Humanitarian Affairs said Friday that the security situation in North Darfur has left more than a dozen aid trucks with relief supplies for 122,000 people stranded in neighboring Northern state, unable to proceed into the only capital city in Darfur that is not controlled by RSF.
"A patchwork of armed actors, including the Darfur Joint Protection Forces, the SAF, and the RSF control different parts of the El Fasher area," Human Rights Watch reported this week. "Tense calm alternating with episodic fighting has prevailed for months."
Since April 14, when RSF began to push into El Fasher, at least 43 people—including women and children—have been killed due to fighting between the SAF and RSF.
"Civilians are trapped in the city, afraid of being killed should they attempt to flee," said Seif Magango, spokesperson for the U.N. high commissioner for human rights, Volker Türk. "This dire situation is compounded by a severe shortage of essential supplies as deliveries of commercial goods and humanitarian aid have been heavily constrained by the fighting, and delivery trucks are unable to freely transit through RSF-controlled territory."
The lack of humanitarian aid in North Darfur has pushed the state toward a famine, with one child dying of starvation every two hours, according to a February report by Doctors Without Borders.
In December, the U.S. State Department announced an $85 million sale of radar and other military equipment to the United Arab Emirates (UAE), which The New York Times reported last year has been covertly supporting the RSF.
U.S. Rep. Ilhan Omar (D-Minn.) proposed a joint resolution to block arms sales to the UAE in January, in light of its support for the paramilitary group.
Omar was among several lawmakers who wrote to President Joe Biden and Secretary of State Antony Blinken earlier this week, urging them to "deliver urgently-needed humanitarian assistance" and to help end the hostilities.
Sudanese-Australian writer Yassmin Abdel-Magied urged Americans on Friday to pressure lawmakers and the White House to take more action.
"There is a tiny window of opportunity for us to find a way to get the UAE... to make the RSF to stop in their tracks," said Abdel-Magied. "Maybe there's a way that we can avoid this massacre."
OCHA called on the warring parties to "take constant care to spare civilians and civilian objects in the conduct of military operations."
"They must, to the extent possible, avoid locating military installations within or near densely populated areas, including towns and camps for internally displaced people," said the office. "It is also imperative that the parties allow safe passage for civilians to leave El Fasher for safer areas."
Keep ReadingShow Less
With US Workers on the March, Southern States Take Aim at Unions
GOP leaders in the region are "truly astonished that workers might not trust their corporate overlords with their working conditions, pay, health, and retirement," said one critic.
Apr 26, 2024
Since six Southern Republican governors last week showed "how scared they are" of the United Auto Workers' U.S. organizing drive, Tennessee Volkswagen employees have voted to join the UAW while GOP policymakers across the region have ramped up attacks on unions.
The UAW launched "the largest organizing drive in modern American history" after securing improved contracts last year with a strike targeting the Big Three automakers—General Motors, Ford, and Stellantis. The ongoing campaign led to the "landslide" victory in Chattanooga last week, which union president Shawn Fain pointed to as proof that "you can't win in the South" isn't true.
The Tennessee win "is breaking the brains of Republicans in that region. They're truly astonished that workers might not trust their corporate overlords with their working conditions, pay, health, and retirement," Thom Hartmann wrote in a Friday opinion piece.
"The problem for Republicans is that unions represent a form of democracy in the workplace, and the GOP hates democracy as a matter of principle."
"The problem for Republicans is that unions represent a form of democracy in the workplace, and the GOP hates democracy as a matter of principle," he argued. "Republicans appear committed to politically dying on a number of hills that time has passed by. Their commitment to gutting voting rolls and restricting voting rights, their obsession with women’s reproductive abilities, and their hatred of regulations and democracy in the workplace are increasingly seen by average American voters as out-of-touch and out-of-date."
Just before voting began in Chattanooga, GOP Govs. Kay Ivey of Alabama, Brian Kemp of Georgia, Tate Reeves of Mississippi, Henry McMaster of South Carolina, Bill Lee of Tennessee, and Greg Abbott of Texas claimed that "unionization would certainly put our states' jobs in jeopardy" and the UAW is "making big promises to our constituents that they can't deliver on."
The next nationally watched UAW vote is scheduled for May 13-17 at a Mercedes-Benz plant in Vance, Alabama.
"Workers at our plant are ready for this moment," Mercedes employee Jeremy Kimbrell said last week. "We are ready to vote yes because we are ready to win our fair share. We are going to end the Alabama discount and replace it with what our state actually needs. Workers sticking together and sticking by our community."
As workers gear up for the election, the Alabama House of Representatives on Tuesday voted 72-30 for a bill that would withhold future economic incentive money from companies that voluntarily recognize unions rather than holding secret ballots. The state Senate previously passed a version of the legislation but now must consider it with the lower chamber's amendments.
The Associated Pressnoted that "Georgia Gov. Brian Kemp signed similar legislation on Monday" and that Tennessee already has one on the books.
With his signature on Senate Bill 362, "Kemp's aim is to thwart future organizing attempts by workers at automotive plants in Georgia, such as those operated by Hyundai Motor Group," according toThe Atlanta Journal-Constitution.
As the newspaper detailed:
Georgia has been a right-to-work state since 1947, when Congress passed the Taft-Hartley Act, allowing workers to refuse to join a union or pay dues, even though they may benefit from contracts negotiated by a union with their employer. Just 5.4% of workers in the state belonged to a union in 2023, according to the U.S. Bureau of Labor Statistics.
But the National Labor Relations Act of 1935, also known as the Wagner Act, protects the right for workers to form a union and collectively bargain for better wages and working conditions.
The new Georgia law is expected to be challenged in court, labor experts have said.
Acting U.S. Labor Secretary Julie Su told the AP on Thursday that she is not sure if the department will challenge the laws, given the National Labor Relations Board's responsibilities, but she stressed that "there are federal standards beneath which no worker should have to live and work."
In terms of joining a union, "that choice belongs to the worker, free from intervention, either by the employer or by politicians, free from retaliation and threats," Su said. "And what we are seeing is that workers who were thought to be too vulnerable to assert that right are doing it, and they're doing it here in the South."
The U.S. labor chief also slammed "unacceptable" union-busting efforts by companies and suggested that protecting the right to unionize is part of President Joe Biden's "promise to center workers in the economy."
"He has said he's the most pro-worker, pro-union president in history, and we are going to make good on that promise. And that includes making sure that workers have the right to join a union," Su said of the president.
Biden's commitment to workers and unionizing rights has caught the attention of GOP leaders. The governors' joint statement nodded to the UAW's January endorsement of the president, who is seeking reelection in November, and South Carolina's leader attacked the administration earlier this year.
During his January State of the State speech, McMaster declared that "we will not let our state's economy suffer or become collateral damage as labor unions seek to consume new jobs and conscript new dues-paying members. And we will not allow the Biden administration's pro-union policies to chip away at South Carolina's sovereign interests. We will fight. All the way to the gates of hell. And we will win."
News From the Statesreported Friday that "of all the foreign-owned automakers in South Carolina, BMW would be the most likely mark in the near term if enough of its workers show interest. The massive plant near Greer—the manufacturer's only U.S. production facility—employs some 11,000 people, twice the number of workers at Volkswagen in Tennessee and Mercedes in Alabama. It has operated in the Upstate for nearly 30 years and is in the process of adding electric vehicle lines."
However, a UAW spokesperson told the outlet that they don't yet have the numbers for the BMW and Volvo facilities in the state, and Marick Masters, a Wayne State University professor who studies the union, said: "I don't think they're writing anybody off but they know the history of unionization. And I would say South Carolina is a very inhospitable place for unions."
Keep ReadingShow Less
Most Popular