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Who owns your genes?

Posted by Carol Rose, On Liberty March 30, 2010 04:04 PM

One of the scariest moments experienced by all too many of us is the call from our doctor saying that we should come in for additional cancer screening.

So imagine how Newton mother Lisbeth Ceriani felt when her doctors told the 42-year-old breast-cancer survivor and mother of an 8-year-old that she should be tested for the ovarian cancer gene, only to learn that a private corporation, Myriad Genetics, owns the patent on the gene in question (the BRCA gene) and was charging more for diagnostic testing than Ceriani could afford to pay.

Fortunately for Ceriani and the rest of us, a Federal judge this week upheld a lawsuit filed by the ACLU and the Public Patent Foundation challenging the government practice of granting patents to corporations that try to capture and "own" the DNA in our bodies.

The decision is good news not only for women at risk for breast and ovarian cancer, but also for men who carry the gene mutation that raises their risk for prostate, pancreatic, and other types of cancer. Since 20 percent of all human genes have already been patented and may be affected by the Court's ruling, the decision also offers hope for new research and access to treatment for people afflicted with Alzheimer's disease, muscular dystrophy, colon cancer, asthma and other illnesses.


Celebrating America's tradition of courageous students

Posted by Carol Rose, On Liberty March 24, 2010 05:00 PM

Spring is in the air, the time of weddings, graduations and high school proms. Emotions run high as loved ones participate in annual rites of passage. This year, one prom -- the canceled prom of Constance McMillen at the Itawamba Agricultural High School in Mississippi -- marks yet another proud American tradition: the student profile in courage.

McMillan, age 18, wanted to attend the high school prom wearing a tuxedo and escorting a same-sex date. Mean-spirited school officials cancelled the prom rather than permit McMillan to attend with her date or while wearing her attire of choice. A federal Judge this week held that Constance' constitutional rights were violated and that her "expression and communication falls squarely within the purview of the First Amendment." McMillen, who has been subject to hostility from classmates and community members, represents the best of American youth.

History is replete with examples of American students putting themselves on the line in defense of civil rights and equal justice, often in the face of popular prejudice.


A ray of sunshine for poor women

Posted by Carol Rose, On Liberty March 23, 2010 06:01 PM

If you are outraged at the ease with which Washington power-brokers of all political stripes are ready to sacrifice reproductive medical care for poor women in return for political gain, here’s a ray of sunshine from that critical third branch of government -- the U.S. courts.

A judge in Boston ruled yesterday that taxpayers can challenge a government program that uses tax dollars to impose religious doctrine on victims of human trafficking. In a victory for religious liberty, the judge is permitting the case to proceed against the U.S. Department of Health and Human Services for selecting the U.S. Conference of Catholic Bishops to dole out government money under the Trafficking Victims Protection Act.

Here’s the problem: government officials picked the Catholic Bishops group to administer the program even after they were told that the organization would impose Catholic religious restrictions on medical providers seeking funding to support medical services for victims of human trafficking. Each year, more than 14,000 people, mostly women, are trafficked into the United States, mainly for sexual exploitation. Amazingly, government officials permitted the Catholic Bishops to restrict the distribution of these public funds to medical service providers who promise not to supply victims of trafficking with emergency contraception, contraception services, abortion services, or even referrals.


Sexting – and who decides what it means to be a girl in 2010 America?

Posted by Carol Rose, On Liberty March 21, 2010 03:35 PM

Sexting -- the latest twist on technology-meets-teenagers – often involves kids sharing revealing pictures of themselves or others by cell phone or online posting. Such youthful idiocy, while concerning itself, is even more dangerous because it subjects teens to criminal penalties for child pornography and a potential lifetime listing on a sex offender registry.

In Massachusetts, cases of sexting have hit the wires in Belmont, Newton, Falmouth, Billerica, and undoubtedly is coming to your town soon enough. But the law hasn’t caught up with the technology. Instead, prosecutors are armed only with the blunt hammer of child pornography statutes, under which sharing such photos constitutes a felony crime and a sexual offense.


About the author

Carol Rose is executive director of the American Civil Liberties Union of Massachusetts. A lawyer and journalist, Carol has spent her career working for and writing about human rights and civil liberties, both in the United States and abroad. More »

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