Monthly Archives: February 2015

Building a Face, and a Case, on DNA

There were no known eyewitnesses to the murder of a young woman and her 3-year-old daughter four years ago. No security cameras caught a figure coming or going.

Nonetheless, the police in Columbia, S.C., last month released a sketch of a possible suspect. Rather than an artist’s rendering based on witness descriptions, the face was generated by a computer relying solely on DNA found at the scene of the crime.

It may be the first time a suspect’s face has been put before the public in this way, but it will not be the last. Investigators are increasingly able to determine the physical characteristics of crime suspects from the DNA they leave behind, providing what could become a powerful new tool for law enforcement.

Already genetic sleuths can determine a suspect’s eye and hair color fairly accurately. It is also possible, or might soon be, to predict skin color, freckling, baldness, hair curliness, tooth shape and age.

Computers may eventually be able to match faces generated from DNA to those in a database of mug shots. Even if it does not immediately find the culprit, the genetic witness, so to speak, can be useful, researchers say.

“That at least narrows down the suspects,” said Susan Walsh, an assistant professor of biology at Indiana University-Purdue University Indianapolis who recently won a $1.1 million grant from the Department of Justice to develop such tools.

But forensic DNA phenotyping, as it is called, is also raising concerns. Some scientists question the accuracy of the technology, especially its ability to recreate facial images. Others say use of these techniques could exacerbate racial profiling among law enforcement agencies and infringe on privacy.

“This is another of these areas where the technology is ahead of the popular debate and discussion,” said Erin Murphy, a professor of law at New York University.

DNA, of course, has been used for more than two decades to hunt for suspects or to convict or exonerate people. But until now, that meant matching a suspect’s DNA to that found at the crime scene, or trying to find a match in a government database.

DNA phenotyping is different: an attempt to determine physical traits from genetic material left at the scene when no match is found in the conventional way. Though the science is still evolving, small companies like Parabon NanoLabs, which made the image in the South Carolina case, and Identitas have begun offering DNA phenotyping services to law enforcement agencies.

Illumina, the largest manufacturer of DNA sequencers, has just introduced a forensics product that can be used to predict some traits as well as to perform conventional DNA profiling.

The Toronto Police Service has submitted DNA from 29 cases dating from the early 1980s through 2014 to Identitas. In 10 instances, the quality of the sample was too poor for any analysis to be done.

In a number of other cases, “it’s enabled us to actually change the direction we were focused on originally,” said Detective Sergeant Stacy Gallant, a cold-case homicide investigator. But there have been no arrests or convictions as a result, he said.

Gender has long been ascertained from crime scene DNA. About 15 years ago, some police departments began trying to determine the geographic ancestry of suspects, as well, by using tests like the ones consumers order to learn about their genetic heritage.

In 2003, such information helped redirect the search for a serial killer in Louisiana. Police had been looking for a white man based on a witness account and on psychological profiles.

But DNA found at the site of one of the murders indicated the person’s ancestry was 85 percent sub-Saharan African. Eventually, a black man was convicted of the crimes.

Now researchers are closing in on specific physical traits, like eye and hair color. A system called HIrisPlex, which was developed at Erasmus University MC Medical Center in the Netherlands, is about 94 percent accurate in determining if a person has blue or brown eyes, but less so with intermediate colors like green, said Dr. Walsh, who helped develop the technology.

HIrisPlex, which analyzes 24 genetic variants, is about 75 percent accurate for hair color, which can change as a person ages, she said.

Scientists look for genetic variants associated with physical traits the same way they look for genes that might cause disease: by studying the genomes of people with or without the trait or the disease, and looking for correlations. But this can be a complex task.

Many genetic variants may be associated with a trait, but each may make just a small contribution. Studies of twins, for instance, suggest that height is 80 percent determined by genetics, said Manfred Kayser, a professor of forensic molecular biology at Erasmus.

But while one study found about 700 genetic variants linked to height, they explained only about 15 percent of variation from person to person, he added.

On the other hand, eye and hair color have proved relatively easy to ascertain from DNA samples, Dr. Kayser said, because a single gene has a large influence on these traits.

Predicting a suspect’s age is not out of the question, either by analyzing markers that shut off certain genes as people grow older, he said.

But many of these techniques were developed by studying Europeans and might not work as well elsewhere in the world, said Kenneth Kidd, a professor of genetics at Yale.

He and other experts are skeptical that faces, which are very complex, can be determined from DNA. While inheritance clearly plays a big role – identical twins look alike, obviously, and people resemble their close relatives — some experts say not enough is known yet about the relationship between genes and facial features.

“A bit of science fiction at this point,” said Benedikt Hallgrimsson, the head of cell biology and anatomy at the University of Calgary, who studies the development of faces.

The critics noted that Parabon, which is based in Reston, Va., and has received grants from the Defense Department, had not published information in peer-reviewed journals validating its methods, even though such a publication would increase sales.

Parabon announced last week that a well-known outside expert would conduct a validation study that could be published. Ellen McRae Greytak, Parabon’s director of bioinformatics, said the company’s technique was based partly on the work of Mark D. Shriver, a professor of anthropology and genetics at Penn State University, who published his methods last year.

Dr. Shriver and his main collaborator, Peter Claes of KU Leuven in Belgium, have developed a complex mathematical method to represent faces, based on measuring the three-dimensional coordinates of more than 7,000 points on the face.

They developed a way to create a sort of generic face based on the person’s sex and ancestry mix, as determined from their DNA. They then adjust that face based on 24 genetic variants in 20 genes shown to be involved in facial variation.

The researchers said in their papers that their ancestry and gender analysis explained only about 23 percent of the variation in faces and that the genetic variants did not really add much detail. But the technique is in early development and they have since added many more genetic variants to try to improve the accuracy. Some of the images generated look similar to the actual face of the DNA donor, others less so.

But law-enforcement agencies sometimes have few good options in homicide cases. In the Columbia, S.C., case, the police were at a standstill in their investigation of the January 2011 murder of 25-year-old Candra Alston and her 3-year-old daughter, Malaysia Boykin, in their apartment.

There were no signs of forced entry, suggesting Ms. Alston knew her killer. More than 100 acquaintances voluntarily provided DNA samples, but none matched that found at the crime scene.

So four years later, on Jan. 9, the police released an image developed by Parabon of a “person of interest.”

“We thought it was worth a shot,” said Mark Vinson, a police investigator, who said the department paid Parabon $4,200 and had not independently vetted the technology.

The release of the image generated a couple of leads, he said, but neither panned out.

Law enforcement authorities say that information about physical traits derived from DNA is not permitted in court because the science is not well established. Still, the prospect of widespread DNA phenotyping has unnerved some experts.

Duana Fullwiley, an associate professor of anthropology at Stanford, said that she worried that use of such images could contribute to racial profiling. She noted that Dr. Shriver developed his system by analyzing the DNA and faces of people with mixed West African and European ancestry.

“This leads to a technology that is better able to make faces that are African-American,” she said. The image produced in the South Carolina case, Dr. Fullwiley added, “was of a generic young black man.”

Dr. Shriver said he initially studied people of mixed European and African ancestry, many of them from Brazil, because that made the analysis easier. His more recent research has involved people of many different ethnicities, he said.

Some legal experts, too, say that DNA phenotyping takes civil liberties into uncharted waters.

Conventional DNA profiling, used for matching, does not rely on DNA linked to characteristics of the person, other than sex. Until now, that had helped blunt concerns that forensic use of DNA would violate the Fourth Amendment protection against unreasonable searches, said Ms. Murphy, the law professor.

But the use of DNA to determine physical traits “completely dissolves that firm boundary,” she said.

It also opens up a new set of questions: What traits are off limits? Should the authorities be able to test whether a suspect has a medical condition or is prone to violence should such testing be possible?

Belgium and Germany do not allow forensic DNA phenotyping. The Netherlands restricts it to predicting traits that are publicly visible, like hair and eye color.

In the United States, some states prohibit testing to determine if a person has a medical condition or propensity for a disease, Ms. Murphy said. But those laws mainly pertain to samples taken from a known person, such as those in a DNA database.

Crime-scene DNA, however, is legally considered abandoned material. “There’s pretty much no law on what you can do to a crime scene sample,” Ms. Murphy said.

Andrew Pollack, NY Times

Your DNA is everywhere. Can the police analyze it?

Anybody who has watched a crime drama knows the trick. The cops need someone’s DNA, but they don’t have a warrant, so they invite the suspect to the station house, knowing some of the perp’s genetic material will likely be left behind. Bingo, crime solved. Next case.

A human sheds as much as 100 pounds of DNA-containing material in a lifetime and about 30,000 skin cells an hour. But who owns that DNA is the latest modern-day privacy issue before the US Supreme Court. At its core, the issue focuses on whether we must live in a hermetically sealed bubble to avoid potentially having our genetic traits catalogued and analyzed by the government.

The Supreme Court’s justices will meet privately on February 27 to consider putting a case with this science-fiction-like question on their docket. The dispute blends science, technology, genetic privacy, and a real-world, unspeakable crime against a woman.

The unidentified woman in the case was raped at her Maryland residence in 2006. Over the course of two years, the authorities interviewed as many as 20 suspects. They all voluntarily gave the Maryland State Police a DNA sample. None of it matched the genetic material left at the crime scene.

Then came another suspect, Glenn Raynor, the woman’s former classmate. He voluntarily met with police, said he wasn’t the rapist, and refused to submit to genetic testing.

During the interview, his arms rubbed against the chair, so police swabbed the chair’s arm rests. The genetic material they discovered matched crime scene evidence found on the victim’s pillowcase and patio. Rayner moved to suppress the DNA evidence, arguing that the police breached his genetic privacy in violation of the Fourth Amendment.

In a 4-3 decision last year, Maryland’s top court ruled against Raynor. Leaving one’s genetic material behind is akin to a fingerprint—so no privacy invasion occurred, the majority reasoned.

“In the end, we hold that DNA testing of the 13 identifying junk loci within genetic material, not obtained by means of a physical intrusion into the person’s body, is no more a search for purposes of the Fourth Amendment, than is the testing of fingerprints, or the observation of any other identifying feature revealed to the public—visage, apparent age, body type, skin color,” the court ruled 4-3.

The three dissenting judges said the case sets a dangerous precedent.

The Majority’s approval of such police procedure means, in essence, that a person desiring to keep her DNA profile private, must conduct her public affairs in a hermetically sealed hazmat suit. Moreover, the Majority opinion will likely have the consequence that many people will be reluctant to go to the police station to voluntarily provide information about crimes for fear that they, too, will be added to the CODIS database…. The Majority’s holding means that a person can no longer vote, participate in a jury, or obtain a driver’s license, without opening up his genetic material for state collection and codification. Unlike DNA left in the park or a restaurant, these are all instances where the person has identified himself to the government authority.

If the justices agree to review the issue, the case will follow several high-profile, modern-day privacy disputes the high court has recently decided.

Last year the court said the police need a warrant to search the mobile phone or other gadget of somebody arrested. In 2012, the justices ruled that affixing a GPS device to a suspect’s vehicle and tracking its every move amounted to search, generally requiring a court warrant.

Raynor’s attorney, Byron Warnken, said the same reasoning should apply to his client.

“The amount of technology—chemical and computerized manipulation, amplification, and isolation—needed to obtain a DNA profile from raw bodily residue demonstrates that DNA profiles are in no way exposed to the public in a way that eliminates a free citizen’s reasonable expectation of privacy,” Warnken told  the justices in a petition. “Covertly collecting and analyzing involuntarily shed DNA is precisely a substitute for a physical trespass into Petitioner’s body. Involuntarily shed DNA is a tangible part of Petitioner’s person.”

But in 2013, the Justices ruled in another genetic privacy case out of maryland. By a 5-4 vote, the Supreme Court declared that the police may take a DNA sample from those they arrest. No warrants were needed.

“When officers make an arrest supported by probable cause to hold for a serious offense and bring the suspect to the station to be detained in custody, taking and analyzing a cheek swab of the arrestee’s DNA is, like fingerprinting and photographing, a legitimate police booking procedure that is reasonable under the Fourth Amendment,” Justice Anthony Kennedy wrote for the majority.

Warnken, however, said his client voluntarily went to meet the police and was not in custody when the authorities gathered his DNA. Instead, Warnken wrote, Raynor was a “free citizen” and the subject of a “surreptitious analysis of involuntarily shed DNA.”

Maryland prosecutors declined to submit opposing briefs to the Supreme Court.

So far, one friend-of-the-court brief has been filed—from the Electronic Frontier Foundation.

“As human beings, we shed hundreds of thousands of skin and hair cells daily, with each cell containing information about who we are, where we come from, and who we will be,” said Jennifer Lynch, a senior EFF staff attorney. “The court must recognize that allowing police the limitless ability to collect and search genetic material will usher in a future where DNA may be collected from any person at any time, entered into and checked against DNA databases, and used to conduct pervasive surveillance.”

David Kravets, ars technical

Canadian bill banning genetic discrimination runs into hurdles

A Senate bill that would block businesses from obtaining details of someone’s genetic makeup has been watered down too much, its supporters charge.

The bill, S-201, was aimed at preventing employers, businesses and insurance companies from gaining access the results of genetic testing for any Canadian. Armed with such data, employers could use it to turn down a new hire, and insurance companies could reject applications based on genetic information.

Canada is the only G7 country that has no legal restrictions on access to the results of a genetic test. Such tests provide a window into the diseases a person is susceptible to or could pass on to their children.

On Thursday, the Conservative-dominated human rights committee in the Senate voted to remove eight of the 11 clauses in S-201 over concerns that these stepped on provincial jurisdiction by trying to regulate the insurance industry, including sections about offences and punishments.

The one substantial clause that was left in the bill prohibits employers from discriminating against an employee on the basis of genetic makeup.

Senate Liberal leader James Cowan, who spearheaded the bill, said no province directly or indirectly raised concerns with him that the original bill interfered with their jurisdiction.

“A federal bill to regulate the insurance industry would be … unconstitutional because it’s provincial,” he said. “But this is not a bill to regulate the insurance industry. This is a bill to prevent genetic discrimination.”

Conservative senators on the committee are “being selective in their views,” he said.

The Conservatives promised in the throne speech more than one year ago to bring in legislation to “prevent employers and insurance companies from discriminating against Canadians on the basis of genetic testing,” but the government has not yet done so. Given the amendments now made at the Senate committee, the government will have to find a way to craft a bill of its own that doesn’t tread on the same ground as Cowan’s rejected proposal.

It’s unlikely Cowan’s bill – even if its amended version were quickly approved by the Senate as a whole – would make it through the House of Commons before June when Parliament is expected to rise. It will not return until after the October federal election.

Sen. Linda Frum, the Conservative critic on the bill, said Tory senators would support a detailed study on the topic of genetic discrimination. She said the issue isn’t a partisan one, and that she and other Conservatives agree with Cowan that something needs to be done.

“This is an issue of technology being out ahead of us and one of the consequences that people are faced with today is they can get a test that can help them better manage their health … but there might be negative financial consequences and that is wrong,” Frum said.

S-201 had been before the Senate for two years. Several groups want to see discrimination and privacy legislation catch up with technology.

“It was a bill that would have shown the federal government was taking a leadership role,” said Bev Heim-Myers, chairwoman of the Canadian Coalition for Genetic Fairness.

“All of the provinces are aware of (the bill),”said Heim-Myers, also the CEO of the Huntington Society of Canada. “The first question (provinces) ask is, ‘What are they doing at the federal level?’ I think it’s critically important for the federal level to set the example … and then the provinces will follow.”

Jordan Press, Ottawa Citizen

Where, oh where is 23andme’s Privacy Officer?

The direct to consumer genetic testing company 23andme made headlines six months ago when Vox published a story about unwelcome family connections found as a result of lax privacy settings with its genealogical services. In one case, a professor’s parents divorced after the site revealed that his father had a child before he was married. This revelation came at a time that 23andme was contemplating changes to its privacy policies that would make such connections even more likely.

In light of the story and the attention it garnered, 23andme quickly announced it was reversing that decision and finally hiring a Chief Privacy Officer after eight years in business; to ensure that consumers would have someone in the company exclusively focused on their privacy. They received kudos for their decision, albeit belated. 23andme ran ads on major job listing sites for the position as well as on its own website. A couple of months later, in late December, those ads disappeared. Since then the company has made no announcement of a hire, there is no staff member listed on the company’s website with that job title, and there’s been no public or private appearance in person, in writing or otherwise of anyone professing to be 23andme’s new Chief Privacy Officer.

At a time when the company is rapidly expanding into new international markets (Canada, United Kingdom) with the full range of its direct to consumer health products and beginning to rebuild its service here in the US (they just received FDA approval to market a Bloom syndrome carrier status report), it would appear that the position of Chief Privacy Officer is even more necessary today. Especially so as the company embarks in major new directions, having negotiated research partnerships with several pharmaceutical companies hungry to get access to 23andmes huge database of its customers’ genetic information.

23andme operates one of the largest private DNA databases in the country (over 850,000 samples according to latest reports) and its business model makes clear an intent to continue its rapid expansion. If the company is truly dedicated to ensuring that the valuable consumer data that’s been entrusted to it is not misused and serves only the public interest, it must work quickly and transparently to hire a Chief Privacy Officer dedicated to that task.

Jeremy Gruber

Protect Californian’ DNA privacy

The recent hackings of millions of consumers’ personal information from health insurer Anthem and hospital group Community Health Systems highlight the need to maintain the privacy of individuals’ health records. So it is welcome news that Assemblyman Mike Gatto, D-Glendale, has introduced a bill to protect the privacy of Californians’ blood and DNA samples taken at birth.

All states collect blood samples from newborns to test for a number of health disorders. But California is one of seven states that retain samples – without parental consent – for later research and one of four that charge fees to loan the samples to researchers. Parents may opt out of having their child’s dried blood-spot sample stored, but they must do so in writing, and many are unaware of the option – or even that the state keeps their children’s DNA in the first place.

Assembly Bill 170 would strengthen these notice requirements and require the state to honor the request of a parent or guardian to destroy their child’s blood sample. Adults aged 18 or older could also demand that their own sample be destroyed.

“Whenever data is stored, data can fall into the wrong hands. Imagine the discrimination a person might face if their HIV status or genetic predisposition to a mental disorder were revealed to the public,” Mr. Gatto said in a statement. “Parents should have the right to protect their children and people should have the right to control how their personal medical records are used once they reach adulthood.”

Screening for diseases at birth should not give the state free rein to claim that someone’s DNA is property of the government indefinitely, much less profit from it. People are free to volunteer use of their genetic material, whether to the government or private companies, but AB170 is a commonsense step toward protecting the privacy of those with concerns who feel otherwise.

Orange County Register Editorial

Seizing DNA In Vermont

Say this for the Vermont Legislature: Sometimes it just won’t take “no” for an answer, even when it should know better.

In 2009, the Legislature passed a law extending the requirement to provide DNA samples from only those convicted of felonies to those merely charged with them. Last summer, the Vermont Supreme Court overturned that provision, holding it to be a violation of the Vermont Constitution’s protections against unreasonable searches and seizures. Thankfully, the presumption of innocence still counts for something in Vermont.

Now Sen. Richard Sears, D-Bennington, is back at it with new legislation that would extend the DNA sampling requirement to people convicted of misdemeanors that carry prison time as a potential punishment.

“The more people you have in the database, the easier it is to eliminate suspects and to zero in on the right suspect,” says Sears. That’s true, and under that theory, the state should require all newborn Vermonters to submit DNA samples in the event that they grow up to be serial killers.

But this bill is flawed in so many ways that perhaps it won’t come to that. First, it casts an exceptionally wide net; an estimated 4,600 people would be added to the DNA database in the first year alone. Thus thousands of Vermonters who have committed only minor offenses would be required to provide to the state what the Vermont Supreme Court has called “a massive amount of unique, private information” that goes beyond mere identification. That’s a disproportionate imposition on the privacy of someone who may have done nothing more sinister than wander onto posted land. And if you think that this is not a matter of concern to you, consider that by some estimates, 70 percent of adults Americans have, often unintentionally, committed a crime for which they could be imprisoned.

Second, entrusting this vast new amount of personal information to the management of the state of Vermont is folly. The folks who brought us the ace Vermont Health Connect website have demonstrated that beyond a reasonable doubt. If the bill passes, maybe Anthem will be hired as a consultant to provide advice on how to keep sensitive personal information secure from misuse.

Third, according to Vermont Public Radio, the annual costs of complying with the legislation would exceed $142,000 for laboratory tests alone, at a time when the Department of Public Safety is looking to cut more than a million dollars from next year’s budget because of reductions in revenue estimates that are forcing retrenchment throughout state government. If it’s crime this bill seeks to combat, a better use of that money would be to shore up the prison program under which inmates earn high school degrees and get job training — something the Shumlin administration is proposing to shrink.

This legislation is yet another example of technological capability outrunning thoughtful consideration of privacy costs and a failure to anticipate further advances that might pose even thornier problems. Suppose scientists somehow discerned a genetic pattern that in some cases prefigures criminal activity of a certain kind. With all these DNA samples in hand resulting from minor offenses, would the state be tempted to subject those who fit the profile to pre-emptive monitoring in the effort to prevent future crimes? Sounds far-fetched, but so did a lot of other scary invasions of privacy that have become reality in recent years.

Valley News editorial

Law Professor Asks Supreme Court to Hear DNA Case

Prof. Warnken Seeks Overturning of Client’s Rape Case, Hopes Justices Will Consider Implications of ‘Sweat Test’

University of Baltimore School of Law Associate Professor Byron L. Warnken has filed a request with the United States Supreme Court, seeking a hearing in hopes of overturning a criminal conviction against a client whose constitutional rights were violated, Warnken claims, through the use of so-called “sweat-test” evidence—DNA collected surreptitiously by police prior to the person’s arrest.

Through his private law firm, Warnken is acting as lead attorney for Glenn J. Raynor, who is serving a 100-year sentence for a 2006 rape. In 2008, Maryland State Police were continuing their investigation of the case when the victim suggested that Raynor, an acquaintance of the victim, could be the perpetrator. The police asked him to be interviewed at their headquarters and he voluntarily did so. After Raynor left—without being arrested—officers collected his DNA from perspiration he left on a chair. The DNA sample proved a match with DNA at the crime scene. Raynor was convicted in Harford County Circuit Court of first-degree rape and related charges.

“This is one of the most ‘cert worthy’ issues in recent years,” Warnken said. “DNA seems to be at the heart of all criminal investigations. Every police officer, every prosecutor, every criminal defense attorney and every judge needs to know the relationship between DNA and the U.S. Constitution.

“There is a split among the jurisdictions on whether there is a reasonable expectation of privacy against DNA testing and, thus, requiring a search and seizure warrant to analyze the highly private genetic make-up of a free citizen—not incarcerated, not under arrest, not on probation, not on parole.”

Raynor’s appeal, which follows a decision against him by the Maryland Court of Appeals last August, may hinge on whether the Supreme Court views DNA as similar or exactly like fingerprints. The Court of Appeals (Maryland’s highest court) asserted that collecting DNA and testing for fingerprints or observing other identifying features are the same, and police have relatively wide discretion in investigating via all of those means.

But, Warnken says, if that is the case, where is the line between DNA and a person’s mobile device?

“The Supreme Court held this year, 9-0, that even if the police validly seize a cell phone during an arrest, they may not go into that cell phone without a warrant because people have their entire lives in their phones,” Warnken said. “If the Supreme Court denies certiorari in this case, a validly arrested person will have a greater expectation of privacy in his cell phone than a free citizen has in his DNA.”

The Supreme Court is expected to announce whether it will grant Raynor a hearing in the coming days.

In his brief asking for cert, Warnken said that if the state court’s ruling is allowed to stand, the decision would “permit technology to erase society’s sense of personal security, forcing ordinary citizens to relinquish their expectation of privacy in their DNA when they enter a public place or identify themselves to the government.

“Rejecting a reasonable expectation of privacy in free citizens’ DNA will fundamentally alter the relationship between law enforcement and the general citizenry.”

University of Baltimore, PR

Fire at a Brooklyn Warehouse Puts Private Lives on Display

No lives were lost in the huge fire that gutted a storage building on the Brooklyn waterfront over the weekend. But the flames put plenty of lives on display as the crumpling warehouse belched up its contents: decades’ worth of charred medical records, court transcripts, lawyers’ letters, sonograms, bank checks and more.

“They’re like treasure maps, but with people’s personal information all over them,” Spencer Bergen, 24, said of the half-charred scraps that he said he had seen strewn around the Williamsburg neighborhood as far inland as Berry Street, several blocks from the warehouse.

New York City sent disaster recovery contractors, equipped with nets, shovels and protective boots, to try to collect the debris. But still, beachcombers sifted freely through the trove of documents, picking their way through remnants of the days when many records were on paper and the city government was one of the few takers for north Brooklyn’s waterfront land.

Compared with the large — and increasingly commonplace — online breaches of personal information at corporations like Home Depot, Target and Sony, the potential damage from stray scraps of paper may seem slight. Still, a glance at a rocky jetty just south of the warehouse revealed a scattering of records stamped “confidential,” a health insurance form with a person’s Social Security number, a urinalysis report complete with a patient’s name and copies of checks featuring bank account numbers.

“If you wanted to steal an identity, I’m sure if you looked at that piece of paper, you’d find a medical record,” said Sherry Hanson, 50, one of the many curious onlookers who clambered down the rocks at the edge of Bushwick Inlet Park to get a closer look at the heaps of paper on Sunday.

Among the government agencies that said they had housed records in the CitiStorage warehouse at 5 North 11th Street were the state court system, and the city’s Administration for Children’s Services and the Health and Hospitals Corporation. Several local hospitals had stored medical records there as well. CitiStorage said the building, with six million cubic feet of storage, also held documents from law and financial services firms.

Reached on Sunday, the hospitals and city agencies sought to play down the possibility that reams of sensitive information had been thrown to the wind. At the same time, however, they said it was too early to know what types of documents had been lost.

The warehouse disgorged so many papers that they clogged the water-intake system of one of the fireboats aiming high-powered jets of water into the smoldering, ice-covered building, trying to smother flames that were still flaring up on Sunday. The current carried more papers to shore, luring people who paged through some documents, photographed others and kept more than a few as souvenirs.

“What if this was all diaries, instead of personal information? Love letters?” mused Loretta Rae, 38, who lives nearby. “If it was diaries,” she joked, “I’d definitely be down there reading it.”

Munirih Quinlan, 29, who works at a hospital , examined slides of what appeared to be an X-ray that had landed on a rock.

“This is crazy,” she said, recalling her training in recognizing Medicare fraud stemming from identity theft. “If you post anything,” she advised others, “make sure it doesn’t have people’s personal information on it.”

The city learned firsthand the dangers of storing important documents in waterfront buildings when storm surges from Hurricane Sandy ravaged two Police Department storage facilities in Red Hook and Greenpoint in October 2012. The department is still struggling to determine the extent of the damage to the Greenpoint building, which contained thousands of pieces of evidence.

Despite plans to move evidence away from the vulnerable Brooklyn waterfront buildings, however, the department has yet to do so, and the blaze over the weekend raised questions about how slowly the city was digitizing or otherwise protecting its records.

What types of records were stored in the CitiStorage warehouse or how many were damaged or dispersed remained a matter of confusion on Sunday evening. The state court system and the Administration for Children’s Services said they had been in the process of removing files from the building, making it unclear what still remained there, while the Health and Hospitals Corporation said it kept vital patient records in electronic form and that its operations would be unaffected.

Some members of the Greater New York Hospital Association — which includes Mount Sinai Health System, NewYork-Presbyterian Hospital, North Shore-Long Island Jewish Health System and NYU Langone Medical Center — kept records at CitiStorage, said Brian Conway, a spokesman for the association, but it was not clear which, if any, were involved.

About the possibility that confidential patient information might have been disclosed on a large scale as the wind scattered unburned records, Mr. Conway said, “There’s no reason to believe that’s a possibility.”

Yet in one indication of the city’s concern, the disaster recovery contractors, in their neon yellow jackets, sealed off the entrance to the rocky jetty with yellow caution tape early Sunday and began to scoop documents out of the water with nets and shovels.

“We’re just here to clean up the debris,” said one of the workers, adding that he did not have permission to explain further.

At a news conference on Sunday afternoon, the fire commissioner, Daniel A. Nigro, said the blaze was expected to continue smoldering for days as the paper inside continued to feed the flames.

The fire, which reached seven alarms, began around 6:20 a.m. on Saturday. But firefighters had also been called there two hours earlier for a smaller fire in the same location, which they found had been contained by the building’s sprinkler system. The firefighters then shut down the sprinklers to prevent further water damage to the paper records, and because sprinkler heads must be replaced after discharging water.

By the time the second emergency call came in, the sprinklers were offline, and the blaze was already large enough to draw scores of firefighters.

“It’s a building full of fuel,” Mr. Nigro said. “Once it got started, it was difficult to extinguish, especially under the extraordinarily rough conditions for the firefighters, with the extreme cold and strong winds.”

He said the department had interviewed three warehouse employees, but investigators had not been able to enter the building and were not close to determining the fire’s cause. Marshals were investigating whether the first fire had rekindled or a second fire started independently, and whether the fire had been deliberately set or sparked accidentally.

In Williamsburg, where luxury high-rises have rapidly replaced the old factories and warehouses and residents fear the 11-acre site where the CitiStorage building sits is next, it was not hard to find people who believed the fire’s cause was obvious.

Less than two blocks downwind from the smoldering waterfront, the cafe MatchaBar, on Wythe Avenue, reopened on Sunday; the acrid, ashy smoke had kept it closed the day before. Among the artists, musicians and writers gathered there was Lisa Markuson, 28, a blue-haired poet, who perched by the window with a Smith Corona typewriter, offering free haikus to customers.

Her ode to the fire:

we’re all pretty sure

that this was no accident

smoke clouds our vision

Vivian Yee, NY Times

CRG in the News-Millions of DNA samples stored in warehouse worry privacy advocates

Privacy advocates are calling for more safeguards related to a state collection of DNA samples from 16 million Californians in a nondescript government warehouse in the Bay Area.

The biobank holds blood taken with the prick of a heel from almost every baby born in California for the last three decades. It is used to screen for 80 health disorders, such as cystic fibrosis and sickle cell anemia.

Unlike most states, California keeps the frozen samples indefinitely and shares them with genetic researchers, for a fee.

State officials say the samples are secure and are used to save lives. But the privacy advocates and an influential state lawmaker, concerned about the potential misuse of DNA information, say parents and donors should have a clear choice about whether the state can keep theirs.

“Throughout the process, from the point of screening to the point of storage to the point of third-party use, public understanding, knowledge and consent is almost completely” absent, said Jeremy Gruber, president of the nonprofit Council for Responsible Genetics.

The blood samples are stored on special paper cards without names — just numbers that can be used to find identifying information stored separately, according to officials. Names are not provided to researchers.

But Assemblyman Mike Gatto (D-Glendale), chairman of a new committee created to address privacy issues in a world where technology is seen as outpacing the law, says that “whenever data is stored, data can fall into the wrong hands.”

“Imagine the discrimination a person might face if their HIV status or genetic predisposition to a mental disorder were revealed to the public,” he said.

The lawmaker wants the state to get written consent from parents before storing children’s blood samples indefinitely and allowing their use in research after the initial screening. Parents can already opt out if they do so in writing, but Gatto said many don’t realize it.

He wants to require that the state get them to opt in, to make sure parents consider the issue. Gatto said he plans to amend such a proposal into a bill he has introduced, AB 170, that would allow the blood donors, when they turn 18, to have their samples destroyed.

He said he may also include stiff financial penalties against researchers if DNA information in their possession is breached or leaked.

One researcher who has used the blood samples to make a breakthrough in public health said requiring parental consent would be “very damaging” to work like hers.

“The parents who don’t suspect anything is wrong with their kids are going to say no, because they are not going to understand” how research might help their children or others later, said Jennifer M. Puck, a professor of immunology in the Department of Pediatrics at UC San Francisco.

Puck developed a test for severe combined immunodeficiency, or “bubble boy” disease, using blood samples from 20 newborns who later developed the malady. That test has been used since 2010 to identify dozens of infants who could ultimately lose their immune systems without treatment, Puck said.

California’s biobank “has been exceedingly useful in my clinical work and my research.”

All 50 states collect and test blood samples from newborns. California is one of 20 that keep blood samples after screening. It has samples dating to 1982 and adds to the collection with every birth.

California is one of seven states that release samples for research without parental consent and one of four that charge a fee for their release, according to a survey published recently in the medical journal Pediatrics.

The state Department of Public Health collected $71,000 in processing fees and approved six research requests in the current fiscal year, according to Scott Sandow, a spokesman for the agency.

A 16-page brochure given to all expectant parents when they arrive at the hospital says they may decline to have their child’s samples stored after the initial screening by sending a written request to the state, Sandow said.

Gatto, who with his wife has been through the childbirth experience twice in the last four years, says he does not remember anything said about blood samples kept indefinitely and used in research.

“Obviously, when that blood is taken, it’s a very emotional time, and it’s a very fast-moving time,” Gatto said. At the births of both of his daughters, he and his wife were absorbed in “arguing about what we were going to name them.”

Gatto said he has spoken to hundreds of parents who were not aware that their children’s DNA was kept by the state.

“You assume they will test your child for the disease and then burn the [sample] as medical waste,” Gatto said.

Gatto envisions a notice that parents would receive well before entering the hospital to give birth, with a box they could check to allow storage of and research with their child’s blood after screening.

Robert Nussbaum, chief of the Division of Medical Genetics at UCSF, said that there is no such thing as a guarantee of absolute security but that new restrictions are unnecessary. The state program is doing a good job of keeping the information stored in the samples confidential, he said.

The program’s benefits to healthcare, he said, “outweigh the risks” of any data compromise.

CRG in the news-Group Says US Needs Better Laws to Prevent Misuse of Genetic Information

President and Executive Director of Council for Responsible Genetics claims that US needs more comprehensive laws that would protect US citizens from inappropriate usage of their genetic information.

The United States need more comprehensive laws that would protect US citizens from inappropriate usage of their genetic information, President and Executive Director of Council for Responsible Genetics Jeremy Gruber told Sputnik News Agency Friday.

“We really need a comprehensive framework to govern the appropriate usage of genetic information, as it becomes more commonly used,” Gruber said.

Currently the United States operates under the Genetic Information Nondiscrimination Act (GINA) of 2008, which forbids to treat people genetically predisposed to disease differently in health insurance and employment, but doesn’t cover life, disability or long-term insurance.

GINA was founded in mid-1990s, Gruber pointed out, but genetics has come a long way since then and became more common in people’s daily lives. The ability to use that information inappropriately, therefore, is also becoming more of a concern, expert explained.

“I think we need greater public awareness and greater legislative attention to this problem, so that we are fully protected,” Gruber said, adding that people will be far more likely to participate in research and other activities that will benefit human kind with regards to genetic research, if there are laws in place that will protect them from misusage of genetic information.

More comprehensive laws are needed to further fight genetic discrimination, expert said, adding that there have been about 200 complaints a year filed with the US Equal Employment Opportunity Commission over GINA violations, and the number will grow as genetic information becomes more pervasive.

“Unfortunately, the system for resolving GINA–related complaints with health insurance in the United States is not transparent,” Gruber said.

At the moment people are not allowed to pursue individual litigation and have to go through government authorities, which do not fully disclose information on what they are doing to raise awareness, so that more complaints can be filed.

Since 2008, only California has taken further effort to provide more comprehensive protection to it citizens. In 2011 local government passed a law which does address genetic discrimination in areas like long-term insurance. The Congress hasn’t yet built upon that model nationally.