Monthly Archives: May 2014

Hong Kong Privacy chief sees red over DNA staff tests

The privacy commissioner has described as outrageous a move by an investment company to identify bloodstains in a toilet by taking DNA samples from all female employees.

Senior personal data officer Natalie Poon Kit- lam said the hunt began after management found menstrual-blood stains believed to be left by one of its employees.

Without naming the company due to privacy concerns, Poon said in order to locate the woman, all female employees were asked to take blood tests, with one of them complaining to the Office of the Privacy Commission for Personal Data.

The commissioner did not say if the company had located the employee and what happened to her.

Commissioner Allan Chiang Yam-wang said it was outrageous, unreasonable, unnecessary and unacceptable to collect DNA.

He said the commission has ordered the company to stop collecting the data and to destroy DNA information already collected.

Poon said the act is a serious violation of the privacy rights of employees as DNA data is unique identification that can only be used in serious circumstances like criminal investigations.

“The company should have used alternative ways that did not violate the privacy of employees,” Poon said.

Lawmaker Claudia Mo Man-ching said the firm had no right to collect DNA information and the act was “intrusive.”

Barrister Albert Luk Wai-hung said there is no law that entitles any organization other than police the right to collect DNA samples for any purpose.

“People can either voluntarily offer their DNA samples or police can collect it for investigation purposes.”

He said “if the company had talked the female staff into giving DNA information by putting pressure or threatening them in any way, it does not count as voluntary.”

He said it was not just a violation of privacy.

“Hong Kong is a civilized place. This act seriously insults women.”

In a separate investigation, a furniture company had collected the fingerprints of its 400 employees to prevent anyone from clocking cards for other colleagues.

The commission said the company was collecting fingerprints unnecessarily and excessively for the purpose of recording attendance.

The fingerprints were wiped out after the commission contacted the company.

 

 

Qi Luo, The Standard

Anniversary of the Genetic Information Nondiscrimination Act

Six years ago today on May 21, 2008, then President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law.  Senator Ted Kennedy hailed GINA as the “first civil rights bill of the new century.”   GINA represents the first time that Congress has passed legislation before the discrimination it is meant to address has become seemingly permanently ingrained in the country’s social fabric, and in that respect I think we should all be proud.

GINA provides strong new protections against access to genetic information and genetic discrimination in both the health insurance and employment settings.  These protections apply to residents of all 50 US States and territories. ( for more information on GINA please visit our Genetic Privacy Network site at www.geneticprivacynetwork.org )   GINA is not a comprehensive genetic privacy law and it does not address all possible forms of genetic discrimination.  For example, it does not address life insurance, disability insurance, or long-term care insurance.  GINA does not protect symptomatic individuals as well.

GINA is a strong and essential first step in the fight against genetic discrimination and misuse of medical information more generally, but it is not our last battle.  We must continue to seek out and address discrimination in every corner and ensure that strong protections are in place to address it.  To this end, the Council for Responsible Genetics continues to work for progressive legislative reform at the state and federal level to prevent the access to and misuse of genetic information and ensure the right of privacy that is recognized in common law and the Fourth and Fifth Amendments of the Constitution.

But today we celebrate, knowing that the EEOC and other federal agencies have taken a vigorous role in enforcing GINA and that the precedent of GINA, as well as the improved level of education on Capitol Hill as the result of the process of enacting it, will allow us to build upon the foundation that GINA now provides.

Jeremy Gruber

deCODE is going door to door for your DNA

First they came for my DNA…

 

Last week more than 100,000 Icelanders found big envelopes in their mailboxes, sent by the Icelandic biotech company deCODE. The envelope (pictured) contained materials to collect DNA.  Iceland’s official search and rescue team is being paid to go door to door and collect the samples.  Apparently they are being paid $20 for each sample they leave with, and (according to colleagues in Iceland) are using very agressive tactics in carrying out their charge.

 

It has been deCODEs plan all along to build a database with every Icelandic citizens DNA.  They already had about 120,000 samples when they went bankrupt in 2009.  Amgens’ purchase of deCODE at the end of 2012 has apparently given them the capital to continue. There is still about 280,000 Icelandic citizen’s whose DNA is not represented on the database.  deCODE had tried to get these samples by making agreements with government agencies to mine medical records but there was a lawsuit and about a year ago Iceland’s Data Protection Authority ruled that if deCODE wanted to continue this strategy it must obtain informed consent. This is apparently their strong arm strategy for doing so. 

 

Brave New World!

 

 

Jeremy Gruber 

 

Iceland’s Search And Rescue Team Is Coming For Your DNA!

 

I was flipping through Fréttablaðið on Wednesday morning when a particular article plus two full-page ads caught my eye. ‘This is crazy!’ I thought, as I read the headline, “Collecting DNA Samples From 100,000 Participants In deCODE Research.”

 

Like Jehovah’s Witnesses, Iceland’s search and rescue team Landsbjörg will soon begin walking door-to-door to win you over to their cause. Only they won’t be doing God’s bidding or even preaching their own gospel. They will be working for deCODE Genetics, a subsidiary of the biotechnology giant Amgen, and their evangelical mission is to collect DNA samples from roughly one-third of the nation. For this task, Landsbjörg will be deploying a small army of 5,000 to 10,000 volunteers who will, according to the article, receive 2,000 ISK (roughly 20 USD) for each person they can get to hand over a pouch containing their DNA.

 

For those unfamiliar with deCODE, the company uses Iceland’s relatively small and homogeneous gene pool (remember the “anti-incest app” that made headlines last year?) to research genetic risk factors for diseases, for instance, but not everyone agrees that the potential benefits outweigh the risks. For instance, there’s always the danger that this information could fall into the wrong hands, and there are all kinds of unethical ways that the information could be used.

 

The newspaper ad for the campaign features photos of Icelanders—such as the dean of Iceland’s medical school, the nation’s minister of health and Reykjavík’s mayor, Jón Gnarr—posing with DNA receptacles. “The rescue team will be paying you a visit in the near future,” the deCODE endorsement states. “Give them a warm welcome and have your envelopes ready if you choose to participate.”

 

While this is undoubtedly clever, it’s also devious if you believe that participation in research should be voluntary and free from any coercion. And it’s surprising that Iceland’s Bioethics Committee would allow it. (Didn’t anybody read that big Special Investigation Commission report which cited an absense of regulatory committee oversight and cheerleading in the universities and the press as some of the reasons for the economic crash in 2008?)

 

Unlike Jehovah’s Witnesses, Landsbjörg is up there with some of society’s most trusted institutions. After all, they’re the ones who voluntarily go out looking for lost people and make miraculous rescues. When a member of the search and rescue team shows up at your door to collect your DNA, your decision is not only about participating in the research, but also about supporting (or not supporting) search and rescue efforts.

 

Incidentally, I received a DNA request in the mail not too long ago, and decided not to return the “Buccal DNA transport pouch,” as appealing as it was to get a deCODE workout T-shirt as a ‘Thank-you’ gift. For starters, giving my DNA to deCODE means that I am effectively giving my parent’s DNA too, and it’s quite possible that one or both of them would prefer not to share this information. In fact, deCODE has used DNA information of relatives to impute genetic information onto Icelanders who never consented to be part of such studies.

 

Who knows what they might do with it, right? In marked departure from their typical research into diseases and disorders, deCODE recently began looking into whether artistic creativity is hereditary and if it can be linked to mental illnesses such as schizophrenia and manic depression. To that end, deCODE CEO Kári Stefánsson has been sending personal letters to members of Iceland’s art community asking them to send him their DNA.

 

Anna Andersen, The Reykjavik Grapevine

Lawsuit alleges unauthorized publication of personal genetics data

On Tuesday, an Alaska man became the lead plaintiff in a proposed class-action lawsuit filed against the makers of Family Tree, a Texas-based DNA testing company

In his suit, Michael Cole alleges that months after purchasing a Family Tree at-home genetics kit and joining a “project,” an online forum for people doing related research about their ancestors, “the results of his DNA tests were made publicly available on the Internet, and his sensitive information (including his full name, personal e-mail address, and unique DNA kit number) was also disclosed to third-party ancestry company RootsWeb (a subsidiary of Ancestry.com, a company that allows users to research their lineage).”

 

If approved as a class-action, the lawsuit would include Alaskans who had their DNA results shared by Family Tree without their consent. But it’s not clear exactly how many people that could potentially include. The filing charges Family Tree with being in violation of the Alaska Genetic Privacy Act and asks the court to award the plaintiffs $100,000 in damages plus attorney’s fees.

Family Tree did not immediately respond to Ars’ request for comment.

“Anyone could come across this information”

Christopher Dore, Cole’s attorney, told Ars that his client did attempt to contact Family Tree about the issue.

“They removed his information from some but not all of the public pages,” Dore said.

These links are still available online, but Ars has chosen not to link to them at Dore’s request.

The results show Cole’s Y-Chromosome DNA (Y-DNA) short tandem repeat (STR) results, which are used to establish paternity and lineage.

“[Cole] was doing a search for himself,” the attorney explained. “His information had been cross-posting on another website with his kit number and that led him to do additional searches and that brought him back to this page. That’s what scared him personally was that it was a simple search and anyone could come across this information.”

According to the lawsuit, Cole had never given Family Tree permission or consent to make his test results public or to share them with any unrelated third party.

“As a result, had he known that Family Tree would disclose his full DNA test results and make them publicly available if he joined a project, he would not have purchased his DNA test from Family Tree, or he would only have done so if offered a substantial discount from the price paid,” the lawsuit states.

Cyrus Farivar , ars technica

 

Government Cracks Down on Fake DNA-Based Medicine

Any medical advance always brings along con men hoping to exploit the news with useless or even dangerous “medicine” of their own that they can lie about to sell to people who don’t yet know how to spot fakes. Personalized medicine, treatment that uses genetic information to improve people’s health, has now reached the point where companies eager to cheat people excited by its promise are sprouting up. The Federal Trade Commission has taken the first steps to quashing these 21st century snake-oil salesmen in a settlement finalized Tuesday with two “personalized nutritional supplement” companies.

Genomics and personalized medicine  has the potential to help countless people by diagnosing cancer earlier, treating genetic diseases and even restoring organs and tissue. It’s still early days for the field and the FDA and FTC are watching closely as techniques and products are developed. GeneLink, Inc. and its former subsidiary,  foruTMInternational Corp., were also watching, and created an entire scam around the idea of personalized medicine. Customers would send them a cheek swab and the companies claimed they would analyze the DNA and use it to make nutritional supplements and skin repair serum that was “scientifically proven” to work all kinds of miracles. Diabetes, heart disease, insomnia and a host of genetic deficiencies could all be cured by the supplements, the companies claimed, all for more than $100 a month, since of course the cures wouldn’t be permanent.

Obviously all of it was nonsense, as much as any fake medical peddler from the crazy mixes of opium and alcohol sold in the 19th century, to the electricity or magnetism-based treatments of mid-century. It still goes on today but there are strict rules about what so-called “holistic” medicine makers can claim their pills and powders do, and that’s why Genelink and foru got in trouble.

“This case is about the consequences of making false claims,” said Jessica Rich, director of the FTC’s Bureau of Consumer Protection in a release.  “It doesn’t matter whether the claims deal with the benefits of direct-to-consumer genetic testing or the privacy of personal information.  It’s against the law to deceive people about your product and to make promises you don’t keep.”

The settlement was first proposed in January but went through review and public comment before getting finalized this week. The companies have to stop claiming their placebos do anything to help people with diseases by affecting their genes without actual scientific proof, and they can’t pretend to have or misrepresent real science to sell their “medicine” either.

In case all of that wasn’t enough, the companies also got in trouble for basic security lapses.

“To add insult to injury, GeneLink and foru also allegedly failed to take reasonable and appropriate security measures to safeguard personal information collected from nearly 30,000 people,” wrote FTC consumer education specialist Colleen Tressler in a blog post. “That’s enough to give anyone insomnia.”

Those same orders from the FTC require them to stop lying about their security  and they have to submit data security programs they use to audits every other year for the next two decades.

Of course all of this is less about these two companies than it is about nipping the practice of fake personalized medicine in the bud. People have the right to sell and buy the hokum, but they can’t lie about it actually curing diseases. It’s inevitable that the next medical con is just around the corner, but hopefully it won’t be necessary for the FTC to go after other companies for the same lies as these at least.

Eric Hal Schwartz, IntheCapital

Minnesota Parents, State Law Now Requires You to Opt Out of Blood Samples Storage Involving Your Newborns

Minnesota’s governor last week signed a bill to reinstate a practice that allows doctors to take blood samples from newborns and store them indefinitely unless their parents opt out, prompting concern from privacy advocates.

All newborns across the country receive screening tests, but storage practices of blood samples vary widely. Minnesota recently decided to retain samples unless parents opt out.

Beginning in the 1960s, the Minnesota Department of Health has screened babies soon after birth for various illnesses and disorders with the hope of quickly identifying the need for any medical intervention.

In 2012, the state legislature banned the retention of these samples, except for a set period of time, unless parental consent was obtained for the samples to be stored longer. This move came after a 2011 Supreme Court ruling, which ultimately led to the destruction of millions of previously stored blood samples.

Earlier this month, the Minnesota state House and Senate passed a bill to reinstate retention of the samples. Parents can now choose to opt out of having samples retained, according to the legislation, and a provision was included by lawmakers to ban the sale of the samples or test results. Gov. Mark Dayton (D) signed the bill into law last week, to the disappointment of privacy advocates.

“Governor Dayton clearly disregarded the rights of parents by handing over to the state the initial right of ownership of newborn DNA,” Twila Brase, president and cofounder of the Citizens’ Council for Health Freedom, said in a statement. “This law that Governor Dayton signed was never about newborn screening; it was never about the health and welfare of children. It was about denying parents first right of consent in the ownership of their child’s genetic blueprint and allowing the state to store newborn DNA and use it for research without parental consent. Governor Dayton did more than sign a bill; he crossed out the right of parents to protect their children and the privacy and property rights of newborn babies.”

The American Civil Liberties Union in Minnesota argued against the law’s opt-out stance, saying that “obtaining informed consent for the retention and later use after newborn screening for all purposes is not only possible but practical.”

The practice of newborn screening through blood samples and other means is not unique to Minnesota. According to the Centers for Disease Control and Prevention, all babies in the U.S. are checked for certain medical conditions soon after birth using this method.

But an article in the journal for the American Academy of Pediatrics several years ago noted that many states do not have policies regarding retention of these blood samples: The review found that four states claim the samples as their own property; five states allow parents to request the samples be destroyed after testing; and six states require parental consent if the sample were to be used for other research. Only one state prohibits the newborn blood samples from being used for other research, while 18 states have not addressed the issue of retaining the samples at all.

“Few state laws address the issues related to the retention and use of DBS in a comprehensive manner. Some states that retain DBS, and use them for research purposes, may be acting outside the scope of their legal authority,” the study authors wrote. “The maintenance of public trust in these important programs is paramount, yet state laws often are silent with respect to the education of parents about DBS and parental control over their retention and use.

“Although the appropriate role of parental decision making is subject to debate, the need for state regulatory bodies to develop a more comprehensive approach to these issues is clear. The appropriate balance between respecting the rights of newborns and their parents versus the potential for public good should be considered carefully. The lack of transparency on the part of states in retaining DBS may undermine the public’s trust in state newborn screening programs and the research enterprise,” the study concluded.

The Minnesota Department of Health said it stores these blood samples and test results for future testing of the child and population-based research. They can also be used to help identify a deceased or missing child.

More specifically, while the blood samples are dried as spots, they still contain biomarkers that can be used to identify elements like antibodies, DNA, environmental toxins and proteins, which can be then used to identify birth defects, cancer or chronic diseases. The department said these samples cannot be used for cloning or stem cell research.

While the screening can have direct benefits for the child tested, the health department said that it could also help families later down the line if used in research to develop new diagnostic, preventative or disease treatment methods.

The new retention practices will go into effect on August 1.

 

Liz Kilmas, The Blaze

DNA deal reached in Christa Worthington murder case

State police will destroy electronic data containing the profile of a former Provincetown man’s DNA that was collected during a highly publicized murder investigation, according to a settlement reached in Suffolk Superior Court.

Keith Amato filed suit in 2008 alleging that the state police, Cape and Islands District Attorney’s Office and state police crime lab violated his civil rights after the investigation into the murder of Truro resident Christa Worthington by retaining his DNA profile longer than originally promised.

On March 25, Suffolk Superior Court approved a settlement indicating the state police will “destroy any electronic data containing a profile of Amato’s DNA or other electronic information obtained from the analysis of Amato’s DNA,” according to court records. Police will be allowed to keep paper copies of Amato’s DNA information as well as “electronic versions of narrative reports that reference his DNA information,” according to the settlement.

“I’m absolutely satisfied,” Amato, who now lives off-Cape, told the Times on Monday.

Worthington, a fashion writer who left behind a life in New York and Paris to raise her daughter in a quiet family cottage, was found dead Jan. 6, 2002. She had been raped, beaten and stabbed multiple times. Her 2½-year-old daughter, Ava, was alone with her mother’s body for two days.

Amato was interviewed by police in the weeks that followed as the investigation was expanded to include people who were in Worthington’s life even if they didn’t know her well, Cape and Islands District Attorney Michael O’Keefe said.

Amato, who was related to Worthington through marriage, said he voluntarily provided a DNA sample at that time to help with the investigation. Police told Amato if his sample did not match, it would be destroyed, along with any information obtained from it, according to the 2008 complaint.

“Nobody in Amato’s position would be told what he is claiming he was told,” O’Keefe said Monday. A person in the victim’s life who provides a voluntary DNA sample is not told anything except that it will help to exclude the person, O’Keefe said.

As leads evaporated in the three years after Worthington’s murder, the district attorney’s office conducted a “DNA sweep,” collecting voluntary DNA samples from about 110 male residents in the Truro area in the hope they would match biological evidence collected from the victim’s clothing. These men were told their samples would be returned or destroyed if they did not match.

Before these random samples were tested, a DNA sample collected from Christopher McCowen, Worthington’s garbage collector, came back as “a hit,” O’Keefe said. McCowen was convicted in 2006 of Worthington’s murder and is serving a life sentence.

Because these random samples were never processed in the lab, they never became evidence in the case, O’Keefe said. The sample from Amato, however, who was a person in Worthington’s life, was processed and entered into evidence, O’Keefe said.

In November 2006, O’Keefe’s office announced that voluntary samples collected during the DNA sweep would be returned or destroyed. At that time, Amato requested that his sample be destroyed, but he received no response from O’Keefe, according to the complaint.

“The records retention law requires all evidence in a murder case be retained for 50 years,” O’Keefe said. “That’s why I think the court … made a point of saying the electronic records as well as the paper records of the narrative of the DNA sample can be retained.”

Amato erroneously tried to include himself in the group of men who voluntarily gave their DNA samples during the sweep, O’Keefe said.

In 2008, after the lawsuit already had been filed, Amato’s cheek swab was returned to his attorneys at the Boston firm Proskauer Rose LLP. The firm agreed to donate its time to the project after being approached by the American Civil Liberties Union of Massachusetts, which Amato contacted after he did not receive a response regarding his sample, according to the complaint.

Although the physical DNA sample was returned, Amato’s attorneys worried that an electronic profile of his DNA could theoretically be used in other cases, said Mark Batten, one of the attorneys.

In 2009, the lawsuit was dismissed by Superior Court Judge Nancy Staffler Holtz, who found the law requires DNA and other case information to be retained for a certain period of time. But two years later, the state Appeals Court overturned the dismissal, saying Amato was free to “pursue claims for equitable relief.”

Amato’s DNA profile was not entered into the Combined DNA Index System, or CODIS, a national DNA database overseen by the FBI, because a person must be convicted of a list of offenses to be included. The basis for the lawsuit was invasion of privacy, Batten said.

The law “doesn’t authorize a crime lab to … keep DNA profiles on innocent people who cooperated with police voluntarily,” said Christopher Ott, communications director for the ACLU of Massachusetts.

Amy Anthony, Cape Cod Times

Top WIPO Official Accused of DNA Theft

The top American official at the United Nations’ World Intellectual Property Organization has accused its Director General, Francis Gurry, of “serious misconduct”  and “violations of national and international law” in connection with a bizarre series of alleged 2008 burglaries of staffers’ offices to obtain samples of their DNA.

The official, James Pooley, is one of Gurry’s four top deputies, and also a highly regarded U.S. patent lawyer, who was nominated for his WIPO job by the Obama Administration in 2009.

Pooley himself is head of the Innovation and Technology branch of WIPO, which administers the international Patent Cooperation Treaty, and which offers patent protection and garners tens of millions in fees annually for providing access to patents in 148 countries.

The accusations he has formally brought forward to WIPO’s member states are not new: they have been put forward by other former WIPO staffers in tribunals that consider internal U.N. justice matters, but no one of Pooley’s rank has done so.

Pooley, in a “Report of Misconduct,” filed Wednesday with the legislative branches of the Geneva-based organization known as WIPO and also sent to the U.S. Mission in Geneva, calls for WIPO’s  member states to “demand immediate answers and explanations from Mr. Gurry” about the charges, and suspend him from duty pending an independent investigation if he fails to comply.

Through his attorney, Pooley declined an interview request from Fox News, “on account of his duty of confidentiality as a staff member of WIPO.”

For his part, Gurry told Fox News, “The allegations are without foundation and I have no further comment.” But he has previously stated  that “I have not seen any allegation that is substantiated. Every single allegation is a repetition of a previous allegation that is being made.”

Pooley’s accusations, obtained by Fox News, are just the latest eruption of controversy at WIPO, a low-profile U.N. “specialized agency” that is gatekeeper for international protection of, and access to, the huge trove of largely Western-originated patents and other forms of intellectual property that are the centerpiece of the 21st Century economy. 

Few countries have a bigger stake in WIPO’s welfare than the U.S., which is by far the largest filer of international patents under the treaties administered by the organization.

Much of WIPO’s spate of controversy has had to do with the autocratic Gurry, an Australian who was recently re-selected by WIPO’s 83-nation Coordinating Committee for a second term starting in October. The decision must still be ratified by the 187 members of WIPOs General Assembly in May.

That ratification is still considered likely.

Gurry has already survived several fierce international storms in the past two years, mostly to do with his penchant for taking controversial actions without informing  the countries that make up WIPO’s membership.

In September, 2012, an investigative committee picked by Gurry himself found “inexplicable” and “unfathomable” a WIPO decision to provide sensitive U.S.-made computers and other high-tech equipment to North Korea and Iran as part of a renovation of WIPO facilities, without informing the U.N.’s committees that monitor sanctions against them. 

Gurry refused to let staffers, including his current accuser, testify before Congress about the WIPO actions.

Last October, another major fuss erupted when participants in WIPO’s annual assembly learned that he had agreed to open new offices in Russia and China without asking for approval. That kicked off an uproar as other countries demanded the same privilege, and the ten-day assembly closed without passing a biennial budget.

Pooley’s complaint, however, is focused on a tangled series of  actions that go back even further in WIPO’s convoluted history, prior to Gurry’s first election as Director General in March 2008.

A variety of evidence, Pooley argues, points toward the likelihood that Gurry, then WIPO’s de facto No. 2, directed security officers to break into the offices to obtain DNA samples from various small personal items of selected staffers as part of a secretive effort to find and root out some faceless opponents.

The samples were used by Swiss police to  check if any of the staffers were the authors of  a series of anonymous letters filled with vague charges of financial impropriety against  Gurry and his wife, which had appeared the previous October. 

At the time, Gurry had filed a criminal defamation charge with Swiss authorities against his unnamed detractors.

All of the staffers Gurry had allegedly suspected were cleared—after their diplomatic immunity was temporarily lifted and their DNA formally checked by police. The formal clearances, Pooley says, came a week after Gurry was confirmed as WIPO’s new Director General.

Even though none of the staffers was charged, Pooley argues, what happened between the secret acquisitions and the police checks was “nothing less than a burglary of personal property that carried biological evidence of the persons who owned it,” an “unlawful act” that was also a “violation of human rights.”

According to Pooley, the alleged crime was discovered after one of the affected staffers persisted in obtaining the police lab reports on the issue, and discovered that DNA samples had been taken months before the formal police checks.

One of the samples in the lab report, it turned out, came from a WIPO security officer with ties to Gurry, who now works at another U.N. agency. Pooley argues—circumstantially—that “it does not stretch our understanding of human behavior to infer” that Gurry could have ordered the actions.

Since then, according to Pooley, Gurry has actively been involved in covering up the case. One of the offended staffers filed her own criminal complaint about the privacy violations in 2009, and the next year filed a case with the International Labor Organization Administrative Tribunal, which handles WIPO staff justice issues. 

Amid charges and counter-charges, Pooley says that Gurry suddenly ordered the woman transferred from Geneva to Singapore, a move she did not want to make; the woman subsequently reached a settlement with WIPO that included a non-disclosure agreement.

The DNA theft issue was taken up again in 2012 by another staffer—Gurry’s newly-created Strategic Advisor to the Director General, Miranda Brown, a fellow Australian who arrived at WIPO as the previous case was reaching its height.   Brown subsequently resigned from her job in December, 2012, charging that Gurry had made her work “impossible.”

BROWN’S RESIGNATION LETTER

Before she left, however, Brown also filed a request for an investigation of Gurry that eventually included the alleged DNA theft. According to Pooley, that probe was squelched after Gurry put severe pressure on WIPO’s chief internal watchdog, who reports to the Director General as well as an independent audit committee.

In February 2014, Brown brought her own complaint against Gurry to the ILO Administrative Tribunal, over the lack of investigation by WIPO of her charges. Among other things, Brown argued that her resignation from WIPO was “forced,” the investigation of her charges was “completely corrupted,” and that having exhausted the “internal means of redress,” she demanded an “independent investigation into these disturbing circumstances.”

That case is still grinding through the ILO justice machinery, and according to Pooley “is likely to take years to resolve.”

The question is whether Pooley’s intervention will make much anything happen much faster. The response of the State Department to his “Report of Misconduct” hints that the Obama Administration is not about to come charging into battle any time soon.

In response to e-mailed queries from Fox News, a State Department spokesman said the WIPO official had “discussed his concerns with the U.S. Mission in Geneva in advance of his decision to make his allegations public,” and that Pooley’s report “has been shared with appropriate offices throughout the United States government. 

The spokesman added that “We take the allegations in Mr. Pooley’s report very seriously and are reviewing the report carefully.    The U.S. Government is committed to eliminating waste, fraud, and abuse at the United Nations and elsewhere, and will continue to work to assure that whistle blowers can report wrongdoing without fear of reprisal.”

Moreover, the spokesman declared,  “The State Department has expressed to Mr. Gurry its concerns about the need for continued reform at WIPO to improve management practices and efficiency.   We continue to work with WIPO, as we do with all international organizations, to promote transparent procedures and accountability.” 

Likely translation: don’t hold your breath.

George Russell , Fox News

This company wants to make your DNA untraceable

As the scope of the NSA’s bulk surveillance program becomes all too clear, less attention has been paid to the issues surrounding genetic information and surveillance. BioGenFutures, a new company-cum-art-project launched by information artist Heather Dewey-Hagborg, hopes to bring DNA surveillance back to the fore. The company just announced a product it calls “Invisible,” which endeavors to make it harder for authorities to trace left-behind DNA evidence back to people. Not only is the product actually launching to consumers, but Dewey-Hagborg believes solutions of its kind will be commonplace within five years.

Back in 2012, Dewey-Hagborg premiered “Stranger Visions” at New York City’s Eyebeam lab. At the time, that project focused on how the physical traces we leave behind in everyday spaces — saliva, skin, and hair follicles — can becomes liabilities if regulations aren’t put in place to restrict how that genetic data is mined. “I was just really disturbed but also preoccupied by this emerging possibility of genetic surveillance,” she told The Verge. “It just struck me that we were having a national dialogue about electronic surveillance, but this form of biological surveillance isn’t being discussed.” “Invisible” expands on that work by imagining a future wherein discrimination based on genetics is an everyday fear.

“Invisible” comes with two sprays, both of which can be combined to keep your identity safe from those sifting for it. The first, “Erase,” is essentially a lab cleaning agent that can allegedly destroy 99.5 percent of trace materials. The second, “Replace,” covers up the remaining .5 percent with DNA material from other sources. Dewey-Hagborg calls it high security in spray form.

Of course, the work itself is knowingly informed by art, and draws on theatrical hyperbole in illustrating the quasi-dystopian future that could conceivably call for ways to erase traces of your DNA. For example, one section of the site cheekily reads, “Dinner with the prospective in-laws going smoothly? Don’t let them judge you based on your DNA, be invisible.” Nonetheless, Dewey-Hagborg cites the passage of the Genetic Information Nondiscrimination Act (GINA) in 2008 and the more recent case of the NYPD trying and failing to link Occupy Wall Street activists to a murder using DNA evidence in 2012 as examples of the powers-that-be taking more assured steps into genetics and reasons for why citizens should have the choice to make their DNA harder to track.

BioGenFutures will release “Invisible” to the market sometime this June, after which Dewey-Hagborg and her company will test out how consumers feel about the idea. “I think, basically, this is just the beginning,” she says. “This is my first prototype. These issues will only continue to emerge and become a part of our everyday lives.”

Kwame Opam, The Verge