Category Archives: Reactions

Massachusetts Court Could Tell the CIA to Stop Using Flawed Software to Pilot Killer Drones

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Jake Meyer by Jake Meyer

The U.S. is increasingly using unmanned aircraft known as drones to fight its wars and kill enemy targets.  These drones are controlled remotely by soldiers thousands of miles away from the action and armed with 100lb missiles — larger drones can be armed with 500lb bombs that are deadly in a radius of over 200 feet.  Concern has been raised about the use of these drones because drones strikes have resulted in civilian casualties.  Civilian casualties are counterproductive to the war effort in Afghanistan where a goal is “winning the hearts and minds” of the local population.  New America Foundation, a public think tank, has reported that 142 drone attacks in Pakistan killed between 1,013 and 1,362 people from 2004 to 2010 and up to a third of the casualties were civilians.  Now a company involved in a contract dispute in a Massachusetts court is alleging that the CIA is using software to guide its drones to targets that was rushed, illegally reverse engineered, and not properly designed for the CIA’s hardware — causing calculations made by the software to be off from 1 to 13 meters (over 40 feet).  The Massachusetts court is currently considering a motion for preliminary injunction and if the court were to grant the injunction, it could possibly force the CIA to stop using the miscalculating software and have more accurate software developed for its drones.

The case involves claims by the Netezza Corporation that Intelligent Integration Systems Inc. (IISI) was under contract to provide a version of IISI’s Geospatial software (an analytical software program that integrates spatial data with non-visual data) to Netezza for a new computer system called TwinFin.  The Massachussetts court dismissed the claims by Netezza in a summary judgment, but counterclaims made by IISI still remain to be ruled on.  IISI’s counterclaims allege that Netezza improperly acquired an IISI trade secret — the Geospatial software — through reverse engineering.  The software licensing agreement contains provisions that explicitly prohibit the reverse engineering of IISI’s Geospatial software and use of its proprietary information.  IISI also alleges that the reverse engineering of the software was to please its client, the CIA, as “Netezza’s own records also show that Netezza was motivated to take this action in order to save face with the CIA.” 

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From Nude Photos to Naked Genomes: Berkeley Gets Poor Marks on Frosh Gene Tests

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Lori Andrews by Lori Andrews

What do George W. Bush, Hilary Clinton, Meryl Streep and Wendy Wasserstein have in common?  As incoming freshman to Ivy League universities, they were required to pose nude for photographs.  The goal of the project was to correct students’ posture—and to correlate posture with later life achievement.  From the Ivy League, the practice spread across the country until a female freshman at the University of Washington in Seattle challenged it.  In 1968, the program was abandoned, under criticism it was eugenic.

I attended Yale after the demise of the notorious photo program.  But when I read about U. Cal Berkeley’s recent plans for its incoming freshman, I realized Berkeley officials hadn’t learned the lesson of the posture program.  Rather than requiring nude photos of their students, Berkeley officials were planning to peer at students’ DNA.  Indeed, they were opening the door for sensitive genetic information to be made available about our future leaders–their current students.

The Scope of the Berkeley Program

Last summer, 5,000 incoming students at University of California, Berkeley received a surprise along with the packet of information about their freshman year.  Their admissions packet contained an item that looked like a Q tip and an invitation to swab the inside of their cheeks for genetic testing.  The targeted genes were involved in breaking down lactose, metabolizing alcohol and absorbing folic acid.

The program came under criticism from lawmakers, bioethicists and even the California Department of Public Health.  Now Berkeley has significantly cut back the program.  What lessons should Berkeley officials learn from this experience? 

Lessons to be Learned

1.    In the quest to be avant garde, don’t forget the basics

Berkeley officials seem to have been caught up in the novelty of the program.  “Science is moving so fast right now,” said Alix Schwartz, director of academic planning for the college’s undergraduate division. “If we assigned them a book, it would be out-of-date by the time they read it.”

Think hard about that comment.  Parents are spending up to $40,000 a year to send their children to Berkeley.  In most of their courses, students will be assigned books to read.  It would not be unreasonable for parents to ask, is it really worth $160,000 for my child to get an obsolete education?  Why don’t I just get a quickie genetic profile done on my child an put him or her in a job best on the genotype?

2.    Take responsibility for the well-being of your students

Years ago, psychology professors routinely required their students to be subjects in experiments as part of their course requirements.  Now the Code of Ethics for psychologists forbids this sort of coercion of students.  But Berkeley’s “offer” to students, although presented as voluntary, was itself coercive.  “The consent form for the project is pure marketing,” Jeremy Gruber, the president of the Council for Responsible Genetics told California lawmakers at the August 2010 hearing on the program.  The form listed speculative, unproven benefits of the testing, but none of the risks.

The genetic testing program was replacing the “one book” program to give students a common experience to discuss.  A student entering Berkeley might feel compelled to swab rather than risk ridicule by others or marginalization by not participating.  Or worse yet, by saying “My parents wouldn’t let me send in my DNA.”

And what happens when the students started discussing the results of their tests?  Would those who were poor metabolizers of alcohol be left behind when others went to the local bar?  And, as Boston University public health professor George Annas asked, would those who had genes related to alcohol tolerance feel they could drink to excess? 

3.    Look closely at conflicts of interest

According to the consent form for the project, the students DNA sample would “become the property of the University” until its destruction and the university would “save the data for future teaching purposes and for possible publication of the aggregated data and its analysis.”  Such an approach makes one wonder if the project is being undertaken for the students’ benefit or for that of university researchers.  Indeed, the professor behind the program had formed his own genetic testing company last year.

There was also to be a writing contest where the winning students would have a chance to win further genetic testing from 23andMe, a private company that offers DNA profiling.  But should a public university be endorsing a private company?  “The FDA and Congress are currently investigating this type of testing, described as ‘snake oil’ by a member of the House Energy and Commerce Committee at a recent hearing, also described as ‘not ready for prime time’ by the Centers for Disease Control,” Gruber said at the California hearings.

4.     Check the legality of what you are doing

Berkeley planned to do the genetic testing in one of its university labs and provide the individual results to the students.  But its labs had not complied with state and federal requirements, such as the Clinical Laboratory Improvement Act, which cover any lab that provides a medical result back to a consumer.  These laws are designed to ensure the accuracy of the test results.  The university argued that it was not providing medical information and thus was not covered by the laws.  But that argument was just not credible, given the university’s position that this information could be useful to students in planning preventive measures.

Ultimately, Berkeley backed off of its program when the California Department of Public Health warned that the plan to have students’ DNA samples analyzed at an uncertified lab would violate state law.  Now, instead of offering individual test results to students, it will only post aggregate results.

Berkeley’s Poor Marks

The Berkeley administration deserves poor marks on how they handled the program.  In fact, they seemed to have flunked psychology (with a coercive program), law (not complying with statutes), biology (by not acknowledging the limits of predict
ive value in the tests they were offering), ethics (creating a potential conflict of interest) and history (not applying what had been learned from posture photos debacle).   Perhaps now they’ve learned the lesson that the use of genetic tests needs to be analyzed and contextualized–which, after all, are the hallmarks of any great college education.

One Judge Puts a Halt to Human Embryonic Stem Cell Research

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Jake Meyer by Jake Meyer

Before the cells in your body become skin cells, muscle cells, or nerve cells, they are first stem cells.  Human embryonic stem cells are pluripotent – they can become any of the approximately 200 types of cells in the human body – which makes them particularly valuable for treatment and research.  Human embryonic stem cells could conceivably be used to treat patients, by transplanting them into damaged or diseased tissue.  They can be used to study disease mechanisms that cannot be studied within the body and to develop non-stem cell based therapies for conditions.  Among the many promising developments in stem cell research, researchers have created: dopamine-producing nerve cells that could be a promising treatment for Parkinson's disease, insulin-producing islet cells that control the insulin levels in mice with diabetes, and liver cells that could be used for treatment of liver diseases.  But a recent case decision casts into doubt the legality of all federal funding of stem cell research.

Chief Judge Royce Lamberth of the District Court for the District of Columbia granted a preliminary injunction preventing the National Institutes of Health from implementing federal guidelines that allow for the federal funding of research on human embryonic stem cells.  For researchers like Dr. George Q. Daley, director of the stem cell transplantation program at Children’s Hospital Boston, "[t]his ruling means an immediate disruption of dozens of labs doing this."

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European Parliament Takes Cloned Meat and Nanoparticles Off the Menu

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Jake Meyer by Jake Meyer

Here in the U.S. we like our food fast, cheap, and in large portions.  Other than that, we don’t particularly care what’s in our food – whether it’s meat from genetically-modified animals, genetically-modified corn which has been found to cause cancer in rats, or nanoparticles.  The European Union is a little more conscious of what their citizens ingest and the European Parliament has called for a ban on meat and milk made from cloned animals and their offspring.  The European Parliament has also called for a moratorium on the use of nano-sized ingredients in food until risk assessments can be made.

European Parliament novel foods rapporteur Kartika Liotard commented on the reasoning behind the ban of meat and milk from cloned animals: “A clear majority in the European Parliament supports ethical objections to the industrial production of cloned meat for food.  Cloned animals suffer disproportionately highly from illnesses, malformations and premature death.”  French Member of European Parliament, Corinne Lepage voiced the concern that these cloning techniques also “raise[] serious issues about animal welfare and reduction of biodiversity, as well as ethical concerns.”

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Nano Ice Cream – Rich Texture, Low in Fat, and High in Unknown Risk

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Jake Meyer by Jake Meyer>

At ISLAT we’ve done studies on the legal issues surrounding nanotechnology for both the Department of Energy and the National Science Foundation, but the issue of nanotechnology has not reached the general public so it is refreshing to see an in depth analysis as part of an AOL News Special Report.  The AOL News Special Report is a three part series written by Andrew Schneider that explores the health risks nanotechnology introduce and the current regulatory efforts to protect workers, consumers, and the environment from these risks.

The first article in the series is titled “Amid Nanotech’s Dazzling Promise, Health Risks Grow.”  This title is apt for the entire series as the issues that are continually raised are the great possibilities that nanotechnology promises weighed against the health risks nanotechnology contains.  The worry is that too much regulation of nanotechnology will impede the development of amazing new technologies (along with it the economic boost new technologies provide).  But too little regulation might lead to widespread harm.

The article describes some of the nanotechnology products, such as the creation of nano-sized delivery systems that can be injected into the body to seek out cancer cells and deliver cancer-fighting drugs.  I previously wrote about other medical innovations that nanotechnology could enable such as nano robots that clean arteries of cholesterol and biosensors that allow a person with diabetes to monitor their glucose level without using a lancet.  Carbon nanotubes are stronger than steel and lightweight.  I previously wrote a blog about how carbon nanotubes could be the answer for the creation of space elevators.

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The Effect of NIH’s Genetic Testing Registry on Direct-to-Consumer Genetic Testing

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Keith Syverson by Keith Syverson

In March 2010, the National Institutes of Health (NIH) announced that it is creating a voluntary national Genetic Testing Registry to provide easy public access to information regarding the availability and utility of genetic tests. The registry, which is slated to be available in 2011, will collect information from clinical, commercial, and research testing organizations and display it in a database geared towards physicians and patients. The announcement came almost two years after the Secretary Advisory Committee on Genetics, Health, and Society (SACGHS) published recommendations suggesting that the NIH establish a web-based registry for laboratory genetic tests. Ideally the registry will include information about the analytical validity, clinical validity, and the clinical utility of genetic tests. This information is particularly important for consumers who wish to utilize direct-to-consumer (DTC) genetic testing options such as 23andMe or Navigenics. Although the database is a step in the right direction for ensuring that patients and doctors receive accurate information regarding genetic testing, the registry may not alleviate the problems associated with direct-to-consumer genetic testing.

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When DNA Takes Center Stage

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Lori Andrews by Lori Andrews

In the wake of the September 11 attacks, Chicagoans Jamil Khoury and Malik Gillani took a unique approach to counter anti-Arab and anti-Muslim sentiment. They formed the Silk Road Theater Company, offering plays which show the complex, multifaceted experiences of people of Asian, Middle Eastern, and Mediterranean descent.  Their productions fight stereotypes with nuanced stories of human similarity and differences.

Now, eight years and multiple awards later, Khoury and Gillani have tackled another complicated and misunderstood phenomenon–genetic testing.  For their latest production, seven playwrights of Silk Road ancestry took genealogical DNA tests and wrote short plays, which are joined together in The DNA Trail.  Performances continue until April 4 at the Silk Road Theater Project, 77 W. Washington, Chicago.

Lori DNA TrailAs the former chair of a federal advisory commission to the Human Genome Project, I was prepared to cringe at any genetic determinism in the plays. I’d been in countless meetings with scientists who tried to reduce complex people to genetic explanations.  One researcher made the controversial claim that, because Maoris were once warriors, he’d searched for and discovered a “warrior” gene in the Maori of New Zealand which makes them more aggressive and violent.  Tariana Turia, a co-leader of the Maori party, questioned why researchers were even looking for the warrior gene in their blood. “Once were warriors?” Turia said to the Daily Telegraph.  “Once were gardeners, once were astronomers, once were philosophers, once were lovers.”

Before the play began, I opened my printed program, which featured bios of the seven playwrights and a brief description of each play.  The first playwright, Elizabeth Wong, started her bio by saying, “I’m in the N9a haplogroup.”  She then went on to say that she thought she was pureblood Chinese, but that the test showed she was linked to a woman out of Africa.

Oh, oh, I thought.  I’d seen data showing that the genealogical tests are not very accurate.  When a journalist sent her DNA to two different companies, she got conflicting results and news that conflicted with her families’ oral history about her ancestry.  The snafu is that 99 percent of our DNA is like anyone else’s, including the people who lived thousands of years ago.  Depending what stretch of the three billion genetic bases the test scrutinizes, I could receive a test result that declares me related to anyone who currently lives or who ever lived.

When the performances began, though, my concerns about determinism vanished.  The playwrights had caught the nuances, complexities, heart-wrenching conflicts, and occasional zaniness of DNA testing.  Wong’s own play, “Finding Your Inner Zulu,” took two sisters on a journey through their DNA that showed how all of us have genetic strengths and weaknesses.  The plays added new twists to questions of identity (Jamil Khoury’s “WASP: White Arab Slovak Pole”) and family (Velina Hasu Houston’s “Mother Road”).  David Henry Hwang’s contribution, “A Very DNA Reunion,” is roaringly funny.  After a son who lives with his parents upsets them by charging a DNA test on their credit card, his purported ancestors–Ghengis Khan, a Ninja, and Cleopatra–show up in his bedroom to help him deal with his folks.  On the other end of the emotional continuum, Shishir Kurup’s captivating and well-acted “Bolt from the Blue” provides a gripping portrait of a family separated by distance dealing with suicide and the propensity to mental illness.

DNA Reunion

Featuring, left to right: Anthony Peeples, Fawzia Mirza, Clayton Stamper, and Khurram Mozaffar.
Photo by Michael Brosilow.

The complexities and significance of genetic testing are laid out in videos on the theater’s website and in essays that cover eight pages in the program.  With the same patience that the Silk Road Theater Project has sought to explain the dreams and goals of discriminated-against people, the Project gives audience members the tools to understand genetic testing.

The extraordinary Nancy Wexler, whose research was responsible for the discovery of the Huntington gene, once said that DNA tests are like card games.  It doesn’t matter what hand you are dealt, it is how you play it.  Once again, the Silk Road Theater Project has played its hand flawlessly.

Big School District is Watching You: A Webcam on a School’s Laptop Photographs a Student Eating Candy in His Home

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Jake Meyer by Jake Meyer
Most of us carry gadgets and use technologies that allow us to be tracked, recorded, and watched.  Cell phones contain GPS units that allow the user to be tracked.  Internet search engines record keystrokes and search queries.  Photos taken for the purposes of Google Maps have caught cheating husbands, when their car was found in a mistress’s driveway.  Almost all cell phones include a camera and allow for video recording, and a bystander can easily capture and post photo or video evidence of you in an embarrassing or compromising situation, but at least then you’d be in public, or aware of the bystander’s presence.  But what if your school district was snapping photos of you and your kids inside your home without you knowing?

At the Merion School District in Eastern Pennsylvania, each of the 2,300 high school students receive a laptop.  The students are required to pay a $55 insurance fee with a $100 deductible if the laptops are damaged or lost.  Because the laptops are frequent targets for theft, each laptop had tracking-security software installed that could be activated remotely to capture images of the user via the laptop’s built-in webcam.  When a laptop is reported lost or stolen, a technician can remotely activate the software which records photos from the webcam and screen shots of what the computer user is doing. School officials report that the software was activated 42 times this school year.

In at least one instance where the software was activated, the school did not observe a theft, but instead peered into the home life of one of their students.  On November 11, 2009, Blake Robbins, a 15 year old sophomore was told by assistant principal Lindsey Matsko, that she thought he was engaging in improper behavior at home.  The school district had captured images from the web camera attached to Robbins’ laptop that appeared to show him handling pills.  Matsko was mistaken, however, as Robbins was eating Mike and Ike’s candy.

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The Lancet Can Erase Its Pages But Can’t Put out the Fire — Exploring the Retraction of Wakefield’s 1998 Study Connecting Childhood Vaccination with Autism

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Keith Syverson by Keith Syverson

This month, The Lancet retracted a 1998 study conducted by Andrew Wakefield that demonstrated a connection between the MMR vaccine and autism.  The Lancet made the retraction in response to the findings of a UK General Medical Council’s Fitness to Practice Panel, which found that Wakefield falsely claimed that the study participants were referred by routine methods and that the investigations were approved by local ethics committees.  The Lancet retraction reignited the debate over whether vaccines cause autism and invites a brief history of the Wakefield paper and a discussion on the more recent debate over the connection between mitochondrial disorders, autism, and vaccines.

In 2004, The Lancet published results of its own investigation of Wakefield's alleged professional misconduct concerning the 1998 study.  The editors reviewed all available documentary evidence and interviewed the study's authors to determine the validity of six claims of misconduct: (1)that the study falsely claimed it received ethics approval; (2)that the study was completed under the ethics approval of an entirely different study; (3) that the children involved were invited to participate directly by Wakefield and his co-authors, rather than through outside referrals; (4) the children from the study were also part of a Legal Aid Board funded project led by Dr. Wakefield with the goals to investigate the "grounds for pursuing a multi-party legal action on behalf of parents allegedly vaccine-damaged children;" (5) that the results of the study were passed to lawyers to justify the legal action; and (6) that Wakefield received £55,000 from the Legal Aid Board to conduct the study and that, "since there was a substantial overlap of children in both the Legal Aid Board funded pilot project and the Lancet paper, this was a financial conflict of interest that should have been declared to the editors and was not."

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DIY Genetics-Biotechnology by Parents, Artists, and…Potential Terrorists

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Lori Andrews by Lori Andrews

When geneticist Hugh Rienhoff's daughter Beatrice was born six years ago, he noticed a few traits that differed from his other children.  She seemed a little floppy, her feet were slightly bigger than usual, and her fingers didn't seem to stretch completely open.  In the months to come, she ate well, but didn't gain a commensurate amount of weight.  Although Rienhoff had left clinical genetics to join the venture capital and commercial biotech worlds, concern about his daughter pulled him back in.  After consultations with experts didn't bring a satisfactory answer about the cause of her disease, he took matters in his own hands.  He built a lab in his attic and started sequencing her DNA. 

Although his work hasn't yet established a definitive diagnosis or cure, his increased understanding of his daughter's biological pathways did lead her doctor to put her on a drug which strengthened her skeletal muscles.  He's also created a digital community at mydaughtersdna.org where other parents of children with unusual syndromes can share information.   According to an article in Wired, when a Bulgarian man posted information about his 12-year-old daughter's symptoms–inability to shed tears, speech problems, and weak limbs–a geneticist responded by correctly suggesting that the girl should be tested for Triple A syndrome.

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