Monthly Archives: March 2015

A New Facebook App Wants To Test Your DNA

A medical research study launched Tuesday aims to screen the genes of at least 20,000 people. Part of a surging tide of genetic research, this project would be unremarkable if not for the place it’s recruiting and communicating with volunteers: Facebook.

The scientists behind the project, Genes for Good, hope that Facebook users will send a tube of their spit to a laboratory at the University of Michigan and use a free Facebook app to fill out periodic surveys about their health, habits, and moods.

The scientists will screen the volunteers’ DNA to try to discover new links between certain genetic variants, health, and disease. To rigorously establish these links, the researchers will need to enlist tens of thousands of volunteers from a wide variety of backgrounds.

“We’re really hoping that the main reason people will join is to say, ‘Hey, my health and genetic information is valuable. I would like to share it and put it to good use,’” Gonçalo Abecasis, professor of biostatistics at the University of Michigan and one of the leaders of the project, told BuzzFeed News. “Hopefully that will be the major motivator.”

Abecasis and his colleagues stress that the Facebook app is a digital portal, and that Facebook will not have access to volunteers’ personal information. From the scientists’ perspective, Facebook is simply a communication service: a smart way to recruit the massive number of volunteers needed to carry out complex genetic studies. “The standard ways of collecting information on people don’t really scale,” Abecasis said.

Genes for Good could go viral if it taps into the public’s altruistic streak — as did Facebook’s organ donation status field, get out the vote campaigns, and the Ice Bucket Challenge.

On the other hand, some people are growing wary of Facebook’s reach into seemingly every aspect of life, and all of the privacy and security concerns that come with that. What’s more, the new app comes at a time when the Food and Drug Administration (FDA) is beginning to crack down on genetic tests of all sorts.

“Some people are going to freak out about this,” Michelle Meyer, an assistant professor at the Union Graduate College-Mt. Sinai Bioethics Program, told BuzzFeed News. “DNA and Facebook are two words that most people do not want to hear in the same sentence.”

They will be able to track how their answers to surveys — such as the age that they smoked their first cigarette, what time they went to sleep the night before, and how extroverted they are — compare to other volunteers.

They’ll also get some insight into their genomes. The researchers will extract DNA from each saliva sample and screen it for about half a million genetic markers. Some of these give clues about ancestry, which the researchers will interpret for volunteers. For example, the Facebook app creates a pie chart showing the proportion of the volunteer’s ancestors who came from Europe, Africa, East Asia, and other areas of the world.

The researchers are keenly interested in markers with medical relevance, and will begin by taking a close look at about 100 genes. Certain genetic variants in the APOE gene, for example, increase the risk of Alzheimer’s disease.

For now, following recommendations of the project’s ethical review board, the researchers aren’t going to tell study volunteers anything about their genetic risk of disease. Participants will be able to download an encrypted file with all of their raw genetic data, however, and those who are savvy about genetics could dig into their health-related DNA markers.

“There are rogue websites out there” — such as SNPedia — “where you can upload genetic data and get some kind of interpretation back about disease risks,” Scott Vrieze, an assistant professor of psychology and neuroscience at the University of Colorado, Boulder, and co-leader of the new app, told BuzzFeed News.

“Our plan is to have a section of the app where people will give an extra level of consent,” Abecasis said, allowing participants to decide whether they want to find out about their genetic predispositions.

“We think it’s people’s data and they should do with it what they want,” Abecasis said. The researchers are still discussing this plan with the project’s ethical review board, he added.

There’s nothing revolutionary about sharing health information online, Robert Green, a medical geneticist at Brigham and Women’s Hospital in Boston, told BuzzFeed News. “There are all sorts of health apps being built right now that allow you to share your exercise or Fitbit information or whatever you want to share with your social network.”

But when it comes to genetic disease risks, sharing information outside of a doctor’s office is hugely contentious. Some ethicists, doctors, and genetic counselors worry that telling people about their potential genetic risks could lead to unwarranted fears or misunderstandings. The FDA, meanwhile, is getting more aggressive about regulating the genetic testing industry.

Consider 23andMe, a genetic testing company in Mountain View, California. The company’s $99 “spit kits” used to provide customers with information about genetic ancestry and risk of disease. In late 2013, however, the FDA decided that 23andMe’s medical interpretations of the genome violated federal law, and the company stopped offering them.

The Genes for Good scientists say they have not discussed the project with the FDA. “We were hoping that this is a little different because it’s a research project,” Abecasis said. When doing research, he added, “you can do a wider range of things” than if selling a product or creating a proprietary database.

But industry experts point out that the FDA is also wading into academic research. Several projects aiming to sequence the genomes of newborns, for example, have been held up by the FDA. Green, who is involved in several of these projects, confirmed that discussions with the agency are ongoing, though he declined to disclose any details.

“The FDA seems to constantly be saying, we have this hammer and everything looks like a nail,” Misha Angrist, an associate professor at the Social Science Research Institute at Duke University, told BuzzFeed News.

Angrist hopes the Genes for Good project succeeds, but suspects it will run into regulatory trouble. “To just say, ‘Hey, we’re research and we’re free’ is not going to satisfy the paternalists of the world,” he said.

The app allows users to post a message to their Facebook wall announcing that they’ve joined the project, as well as directly invite their Facebook friends to join.

There is no button to easily share specific health or genetic results, though the researchers plan to add one to future versions of the app.

“They’re clearly trying to harness people’s familiarity with and enjoyment of social media, and our tendency to mimic people in our social circles,” Meyer, the bioethicist, said. “I mostly think this is OK,” she added, “but research as entertainment is a bit of a new paradigm.”

Other ethicists may raise eyebrows at this approach, Meyer said. That’s because, in order to give meaningful consent, research participants are supposed to be fully informed and make their choice voluntarily. They shouldn’t be coerced or persuaded into participating. “The gray area becomes, well, when is an incentive undue? And when is persuasion unacceptable?” Meyer said.

Ethical conundrums aside, there are also practical questions of whether volunteers will want to share so much information about personal health, and whether they will get bored of the project with time, Green said.

The researchers are planning to share their findings in large networks outside of Facebook as well. They will strip the genetic data of all identifiable information and submit it to public resources such as dbGaP, a large database run by the National Institutes of Health. These databases are open to any credible scientist, including those who work for pharmaceutical companies.

“We’re not planning to sell the data,” Abecasis said, “but we would like people to use it and we’re very open to commercial places using it based on the same basis as everybody else.”

After they’ve completed the initial genetic testing, the researchers will freeze the DNA samples and store them in the lab indefinitely. They could then use them for more comprehensive screenings — such as whole-genome sequencing — in the future.

Although the researchers are taking precautions to protect volunteers’ genetic privacy, they admit they can’t make any absolute guarantees.

“None of these things are completely risk-free in that sense,” Abecasis said. But “I’m of the belief that the more widely you can make data available, the more quickly advances will come around.”

Virginia Hughes, Buzzfeed

FBI to transfer DNA testing software to Vietnam police

The US Federal Bureau of Investigation (FBI) will transfer the DNA testing software to the Vietnamese police under an agreement signed in Washington on Monday.
The signing was witnessed by FBI Director James Comey and Vietnam’s Minister of Public Security Tran Dai Quang, who arrived in Washington D.C. on March 15 for an official visit to the US.
In their talks, Comey and Quang agreed to enhance collaboration between the Vietnamese police force and the FBI through existing mechanisms while speeding up negotiations towards signing cooperation documents to establish a legal framework on crime prevention, including a convict extradition and transfer agreement.
Comey said that Quang’s visit will contribute to deepening the comprehensive partnership between the two countries.
He thanked the Ministry of Public Security and its Investigative Police Agency for investigating and hunting several wanted criminals and handing over evidence relating to several cases as requested by the US.
Both sides lauded the results of cooperation between the Vietnamese Ministry of Public Security and the US Department of Justice and between the Vietnamese police and the FBI in sharing information and experience as well as in investigating crimes, particularly organized crime and those involving drug smuggling and money laundering.
Minister Quang on Sunday had a meeting with US State Department’s Principal Deputy Assistant Secretary for East Asia and the Pacific, Scot Marciel, in Washington D.C.
He expressed his delight at the continuous development of bilateral relations in socio-economics, crime prevention and security-defense, especially after the establishment of their comprehensive partnership in July 2013.
For his part, Scot Marciel described Minister Quang’s visit as a promising start to a number of activities to be held this year in celebration of the 20th founding anniversary of the countries’ relations.
Thanh Nien News

Privacy Questions Plague the 100,000 Genomes Project

With the UK launch of 23andMe’s home DNA testing kit, the legalisation of mitochondrial DNA transfer, and the 100,000 Genome Project underway, optimism abounds about the science of genetics delivering on its early promise. But there is also cause for greater caution and oversight than some biotechnology enthusiasts would like to admit.

These developments are taking place with insufficient regard for their social and ethical implications. We can, however, be sure that the policies and regulatory frameworks currently being enacted will shape future decisions. A balance needs to be struck between the pro-R&D agenda that is driving a permissive regulatory regime, and sensitivity towards concerns about genetic technologies that public consultation, if properly conducted, can alert us to. It is in the public interest that there is wider discussion of the full implications of recent developments.

The 100,000 Genome Project is a case in point. The collection and sequencing of 100,000 individuals’ genetic information is intended to constitute the first phase of what will be a national genomic database. The ‘50 million Genome Project’ will include the genomes and clinical data of all NHS patients in England and Wales. ,We submitted a Freedom of Information request to the Department of Health (DoH) to clarify the way in which data from those participating in the 100,000 Genome Project would be shared with third parties. In line with prior public announcements, and what Genomics England claim on their website  , the DoH initially told us that both clinical information and “genomic data files from the 100,000 Genome project to which academics, researchers and industry members will have access will be anonymous”.

However, following further correspondence the DoH admitted that data made available to third parties, including commercial entities, would not, in fact, be anonymised but rather “pseudonymised”. This has profound implications. Anonymised data is stripped of anything that would permit the identification of the individual in question from the data. Pseudonymised information is quite different, as it provides information on – in the DoH’s own words – “age or age range” and “wider geographical information”. The information made available to third parties includes clinical data pertaining to an individual’s medical history, potentially spanning decades. With such information as age/age range and geographical location – combined with the wealth of ‘big data’ held on databases and available online – it may then be possible to identify those participating in the 100,000 Genome Project.

The DoH’s justification for this sleight of hand defies belief. It is stated that in “public access documents the term ‘anonymisation’ has been used because the term ‘pseudonymisation’ is not widely understood. It is planned that a footnote clarifying the terminology will be added to communication material”. Needless to say this is wholly inadequate: ‘anonymisation’ and ‘pseudonymisation’ are not synonyms, and to pretend otherwise – with only a ‘planned’ footnote to explain as much – directly contradicts the principle of transparency.

Since the DoH admits that “public access documents” state that all data will be anonymised when the format is in fact pseudonymisation, the question arises as to whether those participating in the 100,000 Genome Project have in fact given informed consent for their data to be used in this way. We asked the DoH to specify whether the model of consent employed meant that participants would be made aware of the possible uses of their clinical or genomic data. The DoH admitted that “it is impossible to inform patients at the outset of the potential ways in which their genome might be used”. Furthermore, at “the time of consent participants cannot know every potential exact use of their data.” The following explanation for what appears to be deliberate obfuscation was provided: “longitudinal project aiming to stay at the forefront of genomic research it is impossible to inform patients at the outset of the potential ways in which their genome might be used.”

‘Genomic research’ is extraordinarily vague and provides little in the way of guidance regarding what kind of things whole-sequenced genomes might be used for. It is little consolation the data can only be used in line with the Data Access and Acceptable Uses Policy; however, this policy has not yet been made available to the public.

Finally there is the question as to what extent clinicians will be party to such information. The DoH admitted to us that those involved in administering care “will be able to access their patient’s data, including the raw genome data which, through its nature, requires them to have access to identifiable data”. Once more, the lack of oversight is notable. Clinicians accessing such data will merely be “expected to work within their remit and to abide by the ethical code of conduct for their profession”. There is no reference to how this is to be enforced, if indeed at all.

These revelations raise the issue of trust. Clinicians and other interested parties will have access to sensitive information such as whether or not someone has a predisposition to particular illnesses. Looming over this, however, is the question of trust in the government to hold and use genetic information responsibly. This has to be viewed in the context of the impending expansion of the 100,000 Genome Project into a national genomic database and the integration of personalised medicine in mainstream healthcare, from 2017. It is thus imperative that there is widespread public debate about the acceptable uses of whole-sequenced genomes, and that all developments in this area should be subject to rigorous oversight.

Thus far the 100,000 Genome Project has failed to live up to the required standards of transparency. This is by no means an isolated phenomenon in the UK’s approach to the governance of personal, and often highly sensitive, data. The disparity between democratic accountability – often taking the form of superficial public engagement exercises – and the powerful lobbying mechanisms at the disposal of vested interests needs to be redressed. Only through greatly increased openness from the government can we foster meaningful debate about the risks and implications of this new frontier in medicine.

Edward Hockings and Lewis Coyne, Guardian

The Genetic Information Nondiscrimination Act: The HR Challenge

One of the often overlooked human resources (HR) challenges concerns the Genetic Information Nondiscrimination Act (GINA). Needless to say, the U.S. Equal Employment Opportunity Commission (EEOC) remains ever vigilant as to the enforcement of GINA. Under Title II of GINA, it is illegal to discriminate against employees or applicants because of genetic information. Title II of GINA prohibits the use of genetic information in making employment decisions, restricts employers and other entities covered by Title II (employment agencies, labor organizations and joint labor-management training and apprenticeship programs – referred to as “covered entities”) from requesting, requiring or purchasing genetic information, and strictly limits the disclosure of genetic information.

The EEOC, in its “Strategic Enforcement Plan” (SEP) has announced that it is stepping up private, public and federal sector enforcement of anti-discrimination laws, among them, GINA. Specifically, the EEOC announced that the SEP “establishes a framework for achieving the EEOC’s mission to “stop and remedy unlawful employment discrimination,” so that the nation might realize the Commission’s vision of “justice and equality in the workplace.” The plan has three objectives:

1) Combat employment discrimination through strategic law enforcement.

2) Prevent employment discrimination through education and outreach.

3) Deliver excellent and consistent service through a skilled and diverse workforce and effective systems.

It appears that, following the implementation of GINA, litigation will continue to increase while HR professionals adapt their policies to prevent violations during pre-employment physicals, post-offer fitness-for-duty testing and safety and workers’ compensation policies. 

Rules Against Acquiring Genetic Information:

As a general rule, it is unlawful for a covered entity to acquire genetic information. There are, according to the EEOC, however, six narrow exceptions to this prohibition. They are:

Inadvertent acquisitions of genetic information do not violate GINA, such as in situations where a manager or supervisor overhears someone talking about a family member’s illness.

Genetic information (such as family medical history) may be obtained as part of health or genetic services, including wellness programs, offered by the employer on a voluntary basis, if certain specific requirements are met.

Family medical history may be acquired as part of the certification process for FMLA leave (or leave under similar state or local laws or pursuant to an employer policy), where an employee is asking for leave to care for a family member with a serious health condition.

Genetic information may be acquired through commercially and publicly available documents like newspapers, as long as the employer is not searching those sources with the intent of finding genetic information or accessing sources from which they are likely to acquire genetic information (such as websites and online discussion groups that focus on issues such as genetic testing of individuals and genetic discrimination).

Genetic information may be acquired through a genetic monitoring program that monitors the biological effects of toxic substances in the workplace where the monitoring is required by law or, under carefully defined conditions, where the program is voluntary.

Acquisition of genetic information of employees by employers who engage in DNA testing for law enforcement purposes, as a forensic lab or for purposes of human remains identification is permitted, but the genetic information may only be used for analysis of DNA markers for quality control to detect sample contamination.

Compliance Tips:

Jeremy Gruber, JD, president of the Council for Responsible Genetics, a nonprofit advocacy organization headquartered in New York City, suggest that, employers should take the following steps toward remaining in compliance with GINA and state genetic privacy laws:

  • Confirm that any genetic information or test results currently in their possession are placed in a confidential medical file and kept separate from the employee’s personnel file.
  • Review all company applications to ensure they do not ask for genetic information, including family medical history.
  • Determine they have an updated EEO poster and policy that addresses genetic information.
  • Assess existing group health plan criteria to ensure premiums and contributions are not being adjusted based on health status and that genetic information is not collected at enrollment.
  • Ensure that wellness programs that include health questionnaires make it clear that an employee does not need to provide genetic information. The employer should remove from such questionnaires any questions that relate to genetic information.
  • Be proactive. Years before GINA was enacted, IBM became the first U.S. corporation to establish a genetics privacy policy. This policy prohibits current or future employees’ genetic information from being acquired or used in any context. As genetic information becomes a more common form of data, other employers may want to consider instituting a similar policy.

Summary:

It is essential that today’s public sector HR professional remain ever vigilant as to the specifics of this complex and evolving body of law and remain mindful that GINA forbids discrimination on the basis of genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment.

Joe Jarret, PA TImes

Protecting our children’s DNA

Before they are more than a couple of days old, 98 percent of the roughly 4 million babies born in the U.S. each year have a small sample of blood taken and screened for a variety of inherited conditions. Caught early, many of these conditions can be successfully treated, preventing death and disability.

Newborn screening is one of the great public health success stories in this country, but what happens to the samples after the screening process is completed raises serious and troubling questions of consent and privacy.

Newborn screening is the only widespread health testing in the U.S. conducted not by an individual’s doctor, hospital, or health care provider but by individual state departments of public health. It’s these state agencies that often continue to store these biological samples long after the screening process is over. Indeed, 19 states store the biological samples of newborns for more than two years.

In the case of California and a handful of other states, these samples are indefinitely stored in state repositories and made available to researchers — for a fee. If there is one commonality among state newborn screening practices, it’s the complete lack of transparency of the entire process.

Most parents are poorly informed about screening programs; having just had a baby and still in the hospital they often don’t see any written materials and such programs are rarely explained in person.

Nevertheless, parents in California and most states are assumed to have consented to long-term storage and third-party use of their child’s biological sample unless they explicitly refuse in writing. Parents, understandably, want to be actively involved in decision-making regarding their children’s personal health information. That choice is currently being denied.

The concern of parents that states retain their children’s biological information is heightened because storage procedures and security at these state facilities are arcane and we still have few laws that truly protect the privacy of genetic information. We are at a critical time in the development of medicine: the mapping of the human genome has provided powerful new tools to understand the genetic basis of disease and genetic tests can help diagnose genetic conditions, guide treatment decisions, help predict risk of future disease, inform reproductive decision-making and assist medication selection.

Californians are enthusiastic about the promise of genetic medicine; but are understandably fearful about how this powerful information can be abused. The sheer amount of genetic data being generated today, and its commercialization, raises serious medical privacy concerns. Many individuals are legitimately concerned that their genetic information will be used against them and are unwilling to participate in medical research or be tested clinically, even when they are at risk for serious disease.

The government has not classified the collection and use of newborn screening data as research and its unclear whether the Common Rule, which requires informed consent for human subject research, would apply. This lack of clarity leaves newborn data ripe for misuse.

Consent not only allows parents to make choices about their child’s genetic privacy but is crucial to promoting greater governmental transparency. Such transparency is especially important because newborn screening and storage is often exempted from state genetic privacy laws. Researchers and administrators working with these samples know very well how alarming newborn blood spot biobanking can sound to most people, which explains why many of these clinicians, researchers and state labs would prefer newborn screening practices keep a low profile. That desire shouldn’t trump the public’s interest. Moreover, there’s just no evidence to indicate that better consent and privacy policies would affect any actual benefits from these biobanks.

Newborn screening is one of the few forms of genetic testing to which almost everyone is exposed. Yet parental and just general public knowledge of newborn screening and storage practices is extremely limited.

Assemblyman Mike Gatto, D-Glendale, has recently introduced a bill (AB 170) to address some of these concerns. It requires the state Department of Health to do a better job of informing Californians about the state’s newborn sample storage policies.

The bill also offers parents, and children when they reach adulthood, more control over the decision-making process regarding the retention and use of these samples.

California must revise its approach to long-term storage and use of newborn DNA samples, and include parents in the decision-making process. With no overall governing privacy framework to ensure individual privacy and control over one’s own information, a public debate around newborn screening protections can’t happen soon enough.

Jeremy Gruber is president and executive director of the Council for Responsible Genetics, a public policy organization, U-T San Diego

Government DNA collection under microscope in California

In 2015, genes have many uses.

Soon after every baby in California is born, a hospital worker extracts and logs its genetic information. It will be tested for diseases and then stashed permanently in a warehouse containing a generation of Californians’ DNA.

For those charged with a felony – or, potentially, just arrested – a sliver of genetic code will be taken and placed in a state database that has grown rapidly in the last decade.

As scientists have mapped the personalized blueprints contained in each strand of DNA, the government has been collecting and storing reams of genetic material to combat disease and capture criminals. In seeking to shape when public agencies can take genetic information and how they can use it, lawmakers face a tension between individual privacy and public health and safety.

“You want to make sure government isn’t collecting too much DNA, but you also recognize it is the modern fingerprint,” said Assemblyman Mike Gatto, D-Los Angeles, though he differentiated genetics from fingerprints: “You’re taking the very stuff of life.”

It begins with a prick to the heel. Blood from every baby born in California is screened for diseases such as sickle cell anemia and severe combined immunodeficiency. Every state has a similar program. Where California differs is its policy of storing dried blood on cards indefinitely and, for a fee, loaning them out for research.

The advantages of immediately identifying and treating diseases are indisputable. What makes Gatto and privacy advocates nervous is the knowledge that the government can hold on to that information and share it without consent. Security concerns intensify those fears.

“I think it’s only a matter of time before there’s a high-profile hack, and then somebody would have access to your data,” Gatto said. “As we increasingly discover genes for everything from alcoholism to a propensity for violence, someone could interfere with your ability to get a job by saying, well, that person has the alcohol propensity gene.”

Gatto has a pair of bills that would allow parents to have their babies’ samples destroyed, and dictate when police officers can glean DNA. With the support of district attorneys, Assemblyman Jim Cooper, D-Elk Grove, has a bill allowing DNA collection from people convicted of certain misdemeanors.

While the Department of Public Health emphasizes that the infants’ information is kept anonymous and never assembled into a full genetic profile, skeptics point to a series of studies in which researchers identified supposedly anonymous donors to public genetics databases.

“DNA is a strong identifier of a person, and there is always a theoretical possibility of identifying someone,” Yaniv Erlich, an assistant professor of computer science at Columbia University, wrote in an email. He added that California “mitigates the risk of harm” by not storing some details and penalizing unauthorized release of any data.

Critics also question whether researchers can get their hands on samples. Texas shared newborn samples with a military laboratory hoping to enhance its forensic capabilities, alarming those who said the data should be used strictly for medical research.

“As we build out criminal DNA databases in California and nationwide,” asked Jennifer Lynch, a senior staff attorney at the Electronic Frontier Foundation, “are we going to get the point where law enforcement says, ‘Well, we have this giant repository with the information of everyone born in California in the last 30 years, and that’s a huge treasure trove’?”

Just as the newborn database’s benefits are firmly established, DNA has become indispensable for law enforcement.

Sacramento District Attorney Anne Marie Schubert called forensic DNA “the greatest tool ever given to law enforcement to find the guilty and to exonerate the innocent.” Since Proposition 69 in 2004 empowered law enforcement to sweep up samples from anyone arrested for a felony, the number of people in a Department of Justice database has grown substantially.

“That changed how we deal with DNA in this world,” Schubert said.

But the program is in dispute. The California Supreme Court will soon take up a case challenging DNA collection from people who have not been charged or convicted. Privacy advocates warn about overly broad data collection that ensnares the innocent and the guilty alike.

“Once you start collecting DNA before a person is even convicted of a crime, you’ve started down a road where you’ve erased any balance between the legitimate needs of law enforcement and individual rights,” said Jeremy Gruber, president of the Council for Responsible Genetics.

Speaking from years of experience in the Sacramento County Sheriff’s Department, Cooper said such fears are unfounded. He argued that most Californians will never enter the database.

“If you’re not out committing homicides or sex crimes, your DNA’s never going to pop up,” Cooper said. “So I think if you get arrested and you’re involved in this, there’s a certain right that you lose.”

Gatto’s bill would create new rules if the California Supreme Court strikes down Proposition 69’s mandatory collection provisions. It allows DNA collection only after a probable cause hearing and would automatically erase from the statewide database people who are not convicted.

“People who are innocent of crimes, they should have the right to have their genetic information be as private as they want it,” Gatto said.

The case follows the U.S. Supreme Court’s 2013 ruling that swabbing the DNA from someone arrested for probable cause was legal, akin to taking fingerprints. Justice Antonin Scalia warned in a vehement dissent of the long-term consequences.

“As an entirely predictable consequence of today’s decision,” Scalia wrote, “your DNA can be taken and entered into a national DNA database if you are ever arrested, rightly or wrongly, and for whatever reason.”

While imposing limits on collection in some areas, Gatto’s bill enables DNA collection after misdemeanor convictions that would disqualify someone from owning a firearm.

Similarly, Cooper’s bill would have law enforcement collect samples not just from felony offenders but from people who are convicted of misdemeanors, such as fraud or drug possession, that were collection-triggering felonies until voters reduced sentences by passing Proposition 47 in 2014.

The change has dammed the flow of DNA into the state database, prosecutors say, in the process reducing their ability to make connections to previous crimes and find case-cracking leads. They note that repeat offenders tend to have long records: If a person’s DNA is already logged because of a less serious offense, investigators can identify that person when he breaks the law again.

“Whether it’s theft, possession of drugs, we’ve been able to tie them back to some of the most heinous crimes,” San Bernardino County District Attorney Mike Ramos said at an event announcing Cooper’s bill.

None of this is abstract for Gatto. His father was shot dead by a home intruder last year. As Gatto awaits a break in the case, he is working to regulate the very technology that could bring his father justice.

“For families like mine, who are waiting for breakthroughs that can be caused by DNA and similar evidence, it can be a very long, painful wait if these technologies are prohibited by the courts,” Gatto said. “The right balance is what’s critical here.”

Jeremy B. White, Sacramento Bee

What happens to your genetic data when you die?

What happens to our digital selves after we die? Our Airbnb properties might keep hosting strangers. Our Twitter feeds will live on in the Library of Congress as a permanent record of our weirdest musings. And on Facebook, our designated custodians can continue to manage our profiles after we pass, managing the pictures, videos and status updates that serve as our digital epitaphs.

But what about our most personal digital information: our genes? Millions of Americans are sharing, or considering sharing, their genetic information using services like 23andMe and OpenSNP. What happens to that data after we pass? Can our relatives get access to it? Is it locked away? Who has the right to see it, and under what circumstances? After all, our genes, unlike our bodies, live on in our kids, parents, and siblings after we’re gone. Should they also live forever online?

Some scientists, doctors and bioethicists are worried that we haven’t quite figured out if and when to share our genes from beyond the grave. This week, for instance, four Dutch scientists published an opinion piece in the journal Trends in Molecular Medicine on the topic. They’re advocating granting family members access to sequenced DNA only if they explicitly request it. This option, the scientists wrote, would respect the deceased person’s privacy, while also allowing relatives who actually want the information to get it from doctors and genetic counselors. A more active approach would be for doctors to disclose genetic information as a matter of course, but under the approach the Dutch scientists advocate, families could still opt for the genetic “ignorance is bliss” strategy.

If you’ve had your genes examined—or think you might someday—this is what you should know:

Who owns my genetic information after I die?

Scientifically speaking, we share lots of genetic information with our parents and our siblings. For that reason, some have called DNA “shared property,” to which relatives should have a right. But that gets tricky. Which parts of your DNA do you share with your mother, for instance? And, if you die, should she only get ownership of the parts that you share? Divvying up DNA also doesn’t make much sense, given that the value of genetic information comes from analyzing the whole thing, not just snippets.

Then, there are patient privacy laws that protect what doctors can reveal about their patients, even posthumously. Some doctors might therefore keep the information to themselves. But that comes with its own ethical conundrum. Doctors take an oath not to do harm, so would it be harmful not to disclose potentially life-saving information—say, if your late father had a genetic predisposition to lung cancer?

The best course of action, obviously, would be to impart this information while you’re still kicking. “I counsel all patients to share clinically relevant genomic findings with their relatives while they are alive,” Rebecca Pentz, a bioethicist at the Emory School of Medicine who specializes in cancer research, told me in an e-mail.

Is it legal to take my genes to the grave?

If you have a heritable condition, you could spare your relatives some tough situations down the line by sharing your DNA sequences with them. But you could also be sparing your doctor a legal headache. In Safer v. Estate of Pack, a woman sued her dead father’s doctor in New Jersey for not disclosing that he’d died due to a potentially hereditable form of colon cancer. Later, when she was in her mid-thirties, the woman received the same diagnosis. She argued that the doctor had the duty to warn her. The court agreed with her.

“The court employed the concept of a “genetic family”—the idea that genetic information is not just personal medical information but is simultaneously personal and familial—in extending the duty to warn beyond the patient to members of the patient’s immediate family,” wrote Kristin E. Schleiter in the American Medical Association’s Journal of Ethics.

What happens to my 23andMe data after I die?

23andMe users can share data with other members if they want, but if your relatives weren’t privy to your DNA sequence while you were living, getting access to that information isn’t as easy as hitting a button.

23andMe and me tells me that:

Since 23andMe data is confidential and the property of the account holder, we can only release genetic information to an Executor, Personal Representative or Beneficiary of the deceased’s estate. The person requesting the information must fill out an authorization form, and provide evidence and legal documentation indicating they are authorized to act on behalf of the deceased individual.

Right now, 23andMe has no option for users to name a posthumous data manager, the way Facebook now has. “Conceivably you could just give your account information to a relative, but that falls outside of our policy…transfer a profile to another 23andMe member, or to a new account under a new email address,” spokesperson Andy Kill told me. But that would require some pre-death planning.

So if you want your loved ones to be able to scour your genes for information about what their future might hold for them health-wise, the best bet is to share it with them while you’re still drawing breath. Alternately, you could pre-empt the worst by downloading the raw data and uploading it to the web for all to see. Open-sourcing your genome, while uncomfortable in its own ways, might be the closest thing we have to lasting digital immortality.

Supreme Court gives tacit approval for government to take anybody’s DNA

The Supreme Court on Monday let stand the conviction of a rapist whose prosecution rested on DNA swiped from the armrests of an interrogation-room chair.

Without comment, the justices refused to review a 4-3 decision from Maryland’s top court that upheld the life sentence and conviction of Glenn Raynor. The dissent on the Maryland Court of Appeals said a probable-cause warrant was needed and painted a grim picture of the future:

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…. 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.

In urging the high court to review the case, the Electronic Frontier Foundation wrote 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 technica