In the Family (POV 2008) tells the first-person story of director Joanna Rudnick as she tries to decide on a course of action after testing positive for the BRCA1 mutation, the "breast cancer gene." To raise public awareness of the issues being presented in the April 15th Supreme Court hearing in our case challenging gene patents, Rudnick, POV, and Kartemquin Films will re-release the film online for free streaming. The film features Rudnick's probing interview with Myriad Genetics' founder about its patents on the genes. Today, Rudnick gives POV an update on her health and personal life, and addresses the upcoming Supreme Court case regarding human gene patenting. An excerpt of the update appears below – to read Rudnick's thoughts in full, and to watch In the Family, go to: http://to.pbs.org/ZjQjcW
By Nathan Freed Wessler, Staff Attorney, ACLU Speech, Privacy & Technology Project at 5:36pm
The Drug Enforcement Administration is trying to access private prescription records of patients in Oregon without a warrant, despite a state law forbidding it from doing so. The ACLU and its Oregon affiliate are challenging this practice in a new case that raises the question of whether the Fourth Amendment allows federal law enforcement agents to obtain confidential prescription records without a judge’s prior approval. It should not.
By Jay Stanley, Senior Policy Analyst, ACLU Speech, Privacy and Technology Project at 11:41am
I recently wrote about how difficult it is to know which technologies on the horizon will turn into genuine privacy nightmares and which remain menacing but distant threats. One group of technologies that we’ve had our eyes on for a while are those that purport to read minds. On Sunday the Washington Post ran an article on a Maryland case where a murder defendant is trying to introduce fMRI “lie detector” evidence in his defense. Functional Magnetic Resonance Imaging (fMRI) allows researchers to look at neural activity in real-time by using powerful magnets to trace blood-flow changes in the brain.
By Corinne Carey, Assistant Legislative Director, New York Civil Liberties Union at 8:30am
During the Super Bowl two years ago, a commercial aired featuring a doctor questioning his patient, a man in boxer shorts sitting on an exam table, about whether he’d been tested for cortical spreading depression. The patient begins to say he doesn’t remember, and suddenly flood lights go up. The patient is surrounded by doctors in white coats sitting in a theatre round. One by one, the doctors stand up and recite entries from the patient’s medical records. When they finish, the mortified patient looks at his doctor and says, “Um, can I put my pants back on, please?” The commercial was for GE’s electronic health records system, and I remember thinking: “Was this an ad FOR electronic health records, or AGAINST them?”
By Nathan Freed Wessler, Staff Attorney, ACLU Speech, Privacy & Technology Project at 3:48pm
A federal judge has granted the ACLU’s motion to intervene in an Oregon case that raises the question of whether the Fourth Amendment allows Drug Enforcement Administration agents to obtain confidential prescription records without a judge’s prior approval. (We’ve previously written about the case here).
By Alex Berger, Legislative Assistant, ACLU at 11:57am
At the beginning of the first Senate hearing on the Sandy Hook Elementary School shootings, Sen. Dick Durbin (D-IL) instructed those in the hearing room to stand if they had been affected by gun violence. As nearly everyone in the packed hearing room, including several Senators, stood in silence, the powerful tone was set for the debate over what to do next.
For several months, I have attended every event and hearing on Capitol Hill regarding the Senate's response to the Newtown shootings. I saw the father of a slain first grader whose uncontrollable sobbing at a Judiciary Committee hearing left everyone in the room quiet and still. I witnessed testimony from a doctor who struggled to retell the story of removing bullets from the heads of five-year-olds. And I saw incredible passion and a sense of purpose from both sides of the aisle.
By Jay Stanley, Senior Policy Analyst, ACLU Speech, Privacy and Technology Project at 3:38pm
One of the biggest problems with protecting privacy in the United States is that, almost alone in the advanced-industrial world, we do not have an overarching privacy law that codifies the basic privacy principles that are accepted around the world as the gold standard for protecting this human right.
Instead, the United States pursues a sector-by-sector approach to privacy. The result is that our privacy protections vary wildly according to area. We have some (inadequate) protections for our health and financial data, very few protections for our commercial transactions, and very rigorous protections for our video rental records.
By Jay Stanley, Senior Policy Analyst, ACLU Speech, Privacy and Technology Project at 4:35pm
We hate to say “I told you so.”
In 2010, the Supreme Court heard a case called NASA v. Nelson, which involved the government’s right to carry out highly intrusive background checks. NASA decided to require its employees—many of whom had already been working for the agency for many years in what the government conceded were “low-risk” and “non-sensitive” positions—to fill out a form in which they were required to disclose any illegal drug use or possession within the previous year, along with details on any treatment or counseling received for such use. These employees were also required to sign an authorization permitting NASA’s security people to obtain
By Corinne Carey, Assistant Legislative Director, New York Civil Liberties Union at 1:46pm
I just returned from the 2nd International Summit on the Future of Health Privacy in Washington, D.C. where the title of this year’s Summit was: “Is there an American Health Privacy Crisis?” The Summit brought together privacy experts, public health officials, lawyers, technology developers, and academics to discuss the importance of privacy protection (as I wrote about last week) as the federal government moves to establish the Nationwide Health Information Network (NwHIN). Security breaches and patient consent were two major themes at the Summit—two issues which I believe are inextricably linked.
