Who Owns Your Genes?

If you’ve never heard of Myriad Genetics, now might be the time to become acquainted. Myriad is a molecular diagnostic company, and they own part of your body. More specifically, they own patents on two human genes called BRCA1 and BRCA2, both of which are associated with inherited risk of breast and ovarian cancer. We all have these genes, but people with certain mutations are much more likely to experience cancer in their lifetimes.   Because Myriad owns the patent on these genes, they have the exclusive rights to stop all clinical testing and research done on the genes. Their monopoly on the genes makes it impossible for women to access alternate tests or get a comprehensive second opinion about their results. And it also allows Myriad to charge a high price for its tests.   This is probably the point where you expect a big “April Fools!” announcement. A private company can’t own part of your body and keep other researchers from even looking at it, right? Sadly, gene patenting is no joke. However, if the ACLU is successful in our current legal challenge, it might be a thing of the past.   In just a couple weeks the Supreme Court will hear our lawsuit, Association for Molecular Pathology v. Myriad Genetics, which challenges the basic idea that human genes can be patented. The Court has consistently said that products of nature and laws of nature are not patentable. Myriad claims that they “invented” the genes in question because they “isolated” them and removed them from the rest of the genome. We think that’s ridiculous and we’re hoping the Court agrees. And with roughly 20 percent of human genes already patented, their ruling won’t just affect these two genes, either.   For more information on gene patenting and the ACLU’s upcoming lawsuit, click here.

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The Judge

For those of us who are lucky enough to get to spend our first year or two after law school working for a judge, the experience invariably shapes our expectations about who a judge is and how she should go about her work. My judge set a high bar (clerks always use the possessive when referring to their bosses). Justice Susan Calkins was both the model of the kind of lawyer that I hoped to be--one who tries to use the law to make people's lives better--and the kind of judge that I hoped would hear my client's cases--careful, thoughtful, and conscious of the real-world impact of legal interpretation. We decided at the ACLU of Maine that we would write blog posts about women that we admire for Women's History Month, and it didn't take me long to decide on a topic (though Ed's choice of Joan Benoit Samuelson is pretty great too). Susan Calkins began her legal career at Pine Tree Legal Assistance in 1970, as a fellow in the Presque Isle Office. Three years later, she became the director of Pine Tree, which she led until 1976. The 1970s were a time of great expansion and experimentation in legal services. The landmark welfare reform cases like Goldberg v. Kelly gave lawyers for the poor new opportunities to protect their clients. Pine Tree Legal was at the forefront of these developments, and Susan, her husband Hugh and Portland attorney Bob Mittel brought one of the most important civil rights cases of the era, Maine v. Thiboutot, which recognized that the federal civil rights act, 42 U.S.C. 1983, can vindicate statutory as well as constitutional rights. Susan was appointed to the Maine District Court in 1980, and she was later named the first Chief Judge of that court. She served briefly on the Maine Superior Court, and in 1998 she was appointed by Governor King to the Maine Supreme Judicial Court, where she served until 2007. I worked for Justice Calkins from 2002 to 2003, and one of the things that really stuck with me was how hard she worked. I don't think I was ever in the office before her, and on days when the Court was not hearing cases, it seemed like she rarely left her office--reading through briefs, drafting notes to herself, her clerks, and her colleagues, drafting opinions. The first case that I was assigned to research as a clerk involved moose hunting. Not having studied moose hunting law in school, I was inclined to think this was perhaps a joke played on the new clerk from out-of-state. But for Justice Calkins, there was really no such thing as a joke case--every case involved real people, and the court's decisions would have a substantial impact on their lives. She was always cognizant of that, and she taught us to be cognizant of it as well. If you visit the Maine Supreme Judicial Court courtroom in Portland, you can see Justice Calkins's picture over the seating gallery to the right of the bench. John Hart Ely once wrote of his judge, Chief Justice Earl Warren, that you don't need many heroes if you choose carefully. I have always found captures my feelings about my judge as well.

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Girls Rule the House (and the Senate)!

Today was my FAVORITE day of the session, every session. Today was Girls Day at the State House, an annual event sponsored by our friends at Maine Women's Lobby.  100 eighth grade girls come to Augusta from all over the state. They learn about the legislative process, participate in a mock public hearing and stage a press conference. Every year, I am amazed by how smart, opinioned and articulate the girls are. It gives me great hope for our future as a state. These young women might consider running for office some day and it all started today! Interestingly enough, the bill debated in a mock public hearing and press conference was LD 699, legislation that would allow single sex education in Maine. The ACLU of Maine was opposed to this legislation in its real public hearing last week before the Education Committee - although we remained neutral today.  The girls in my mock public hearing and press conference unanimously voted against the bill. They stated lots of reasons for their opinions - separate but equal is not equal, girls and boys deserve the same education and how important it is for the genders to be socialized together. A couple of the girls even brought up how this could negatively impact transgender and gay or lesbian students in our schools. On a break, I shared with Shenna that it's a different world than when I was in eighth grade!  All in all, an amazing day. Thank you to all the girls who make my year every session. You are shinning stars. 

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Dorothea Dix: Speaking Up for Those Who Need it Most

Dorothea Dix, born in Maine in 1802, was a champion of the rights of the mentally ill before most people even considered the idea that the mentally ill should have rights. As a volunteer Sunday School teacher for women incarcerated in the East Cambridge Jail in Massachusetts, Dix witnessed conditions that would shape her work forever: the jail was unheated and dirty, and no consideration was given to the care of the mentally ill. Her observations led Dix to think seriously about the treatment of prisoners, and particularly the mental ill. She began to read all the available research, interview doctors and study the work of other reformers. Realizing that she could not fully know what she could not see, she set out to visit many of the jails in the state. Her survey of the Massachusetts jails would be the first of many across the nation and Europe. She worked with lawmakers to establish mental health care facilities and reform policies on care for the mentally ill. She even managed to convince Pope Pius IX of the need for reform in Rome’s prisons. At a time when it was rare for women to be given an audience to influence public policy, Dix undertook a bold advocacy campaign. At a time when little thought was given to the rights of the mentally ill, she was a beacon of hope in a world that had been plagued by abuse and neglect. She should be remembered as an advocate for the most vulnerable among us. The ripples of her work are still felt today.

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No Limits

Joan Benoit Samuelson would be famous if she didn't run another step after winning the inaugural Olympic Women's Marathon in 1984.  A two time Boston Marathon champion and American women's marathon record holder for 17 years, Samuelson is perhaps Maine's most famous and recognizable athlete.   However, it's what she continues to accomplish as a runner and community leader that makes her truly extraordinary. She founded and continues to help organize the Beach to Beacon 10K road race, which generates $30,000 annually to Maine nonprofit organizations that work with children.  She has written two books, Running Tide and Running for Women, coached women's cross-country and long-distance athletes, and is a motivational speaker and sports commentator. In 2008, at 50 years old, Samuelson participated in the Olympic Marathon Trials in Boston and met her goal of running under two hours and 50 minutes, setting an American record for her age group.  In 2012, she ran the Boston Marathon in under three hours, to celebrate the 40th anniversary of Title IX. Joan Benoit Samuelson winning the 1984 Olympic Women's Marathon:

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Single-Sex Classrooms - A Bad Idea for Maine

Today, the Joint Standing Committee on Education and Cultural Affairs is holding a public hearing on LD 699, which seeks to allow Maine public schools to segregate classrooms by sex. We will testify in opposition, alongside many of our partners including Equality Maine and the National Organization for Women. On top of the questionable legality of single-sex schooling in public schools, segregating students by sex in Maine's schools raises significant educational and pedagogical concerns. The research that is cited in support of single-sex schooling has been deemed “pseudo-science” because it lacks scientific support. While many students who attend single-sex schools outperform many students in coeducational institutions, the link between the single-sex educational environment and academic success is tenuous. There is no empirical evidence showing that the success of these students stems from the single-sex nature of the learning environment. (Diane F. Halpern et al., The Pseudoscience of Single-Sex Schooling, 333 Science 1706, 1706 (2011).)  Most of the research on single-sex schooling in the United States has been conducted on private or religious schools, which tend to draw students from an affluent pool. (Amanda Datnow et al., Is Single Gender Schooling Viable in the Public Sector? (2001).) Research on the benefits of single-sex schooling often fails to control for socioeconomic factors. (Id.)   Thus, it is likely that the relative academic success of students in single-sex environments is attributable to factors apart from sex segregation. Advocates of single-sex schooling claim that boys and girls learn differently because of differences between male and female brains. Two prominent advocates, Leonard Sax and Michael Gurian, have used alleged brain differences to justify sex-segregated schooling and different teaching methods for boys versus girls. (ACLU Women’s Rights Project, Boys’ Brains vs. Girls’ Brains: What Sex Segregation Teaches Students (2008).) However, neuroscientists have found little difference between the brains of male and female children, and where differences have been observed in adults, such differences “may result from a lifetime of sex-differentiated experiences[.]” (Halpern at 1706.) A three year case study of so-called "single gender academies" in California found that perceived gender differences amongst boys and girls led teachers to conduct classes differently, which in turn reinforced gender stereotypes. (Datnow, 2011.) For example, boys were perceived to be louder and more talkative, leading teachers to create a stricter environment in boys’ classes. Separating boys and girls during academic periods, but bringing students together during social periods, like lunch and recess, increased the risk that students themselves viewed members of the opposite sex in social and romantic terms, rather than intellectual terms. Segregating classrooms to promote gender equity is problematic because single-sex schooling reinforces sex-stereotypes. We hope the committee will consider these concerns, as well as the legal peril of schools engaging this type of programming, and vote ought not to pass on LD 699.

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A Declaration of Conscience

For those of us who grew up in Maine, the name Margaret Chase Smith is one we’ve heard since we were little children. Her place in history is undeniable: the first woman to represent our state in Congress; the first woman from any state to serve in both the House and the Senate; and the first woman in American history to run for president for a major party.   This week, in celebration of Women’s History Month, our entire staff will be blogging about a handful of important Maine women. There are obviously too many to cover in a week, or a month, or a year, but we’ll highlight a few of our personal favorites. Smith’s legacy is so strong and her story so well known that I thought it best to highlight just one moment from her illustrious career.   On June 1, 1950, Smith rose to speak on the floor of the U.S. Senate. Less than four months earlier, Joe McCarthy had infamously revealed his “list of names,” and no member of Congress had yet to speak out against his anti-Communist witch hunt that was gripping the nation.   But Smith would have none of it. With McCarthy sitting just two rows behind her, she denounced his tactics (though not mentioning him by name) and offered a robust defense of the right to free speech. Only six of Smith’s colleagues signed onto her declaration, leading McCarthy to coin the term “Snow White and the Six Dwarfs.” But President Truman saw it differently, telling Smith that her speech was “one of the finest things that has happened here in Washington in all my years in the Senate and the White House.”   I encourage you to read Smith’s full speech, which she deemed her “Declaration of Conscience.” You can find it by clicking here. Much of it deals with the politics of the time. But the universal themes of civil liberties and the courageousness of the speech, especially given the moment at which it was given, are impossible to ignore. Here is my favorite passage:

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This week in civil liberties: Women’s Rights, Voting, DOMA, and Drones

Each Friday, we’ll bring you updates on the latest civil liberties news from Maine and the nation. This week, we bring you highlights from around the country, courtesy of the nationwide ACLU. “Today is March 1st – the start of Women’s History Month, which is dedicated to honoring women throughout history who have taken part in the movement to advance women’s rights. Over the years, women have fought tirelessly against discrimination to break down the social and economic barriers to gender equality.” Read more. “More than 45 briefs from religious leaders, members of Congress, retired military generals, children's advocacy groups, civil rights groups and others will be filed today in support of Edith "Edie" Windsor's challenge before the U.S. Supreme Court to the Defense of Marriage Act (DOMA).” Read more. “The use of surveillance drones is growing rapidly in the United States, but we know little about how the federal government employs this new technology. Now, new information obtained by the ACLU shows for the first time that the U.S. Marshals Service has experimented with using drones for domestic surveillance.” Read more. “During the signing ceremony of the Voting Rights Act, President Lyndon B. Johnson characterized the law as "one of the most monumental laws in the entire history of American freedom." Since that day, this landmark civil rights law has steadily and surely defeated and deterred countless discriminatory and varied barriers to the ballot.” Read more.

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