Citing privacy concerns, U.S. panel urges end to secret DNA testing

They're called discreet DNA samples, and the Elk Grove, California, genetic-testing company easyDNA says it can handle many kinds, from toothpicks to tampons.

Blood stains from bandages and tampons? Ship them in a paper envelope for paternity, ancestry or health testing. EasyDNA also welcomes cigarette butts (two to four), dental floss ("do not touch the floss with your fingers"), razor clippings, gum, toothpicks, licked stamps and used tissues if the more standard cheek swab or tube of saliva isn't obtainable.

If the availability of such services seems like an invitation to mischief or worse - imagine a discarded tissue from a prospective employee being tested to determine whether she's at risk for an expensive disease, for instance - the Presidential Commission for the Study of Bioethical Issues agrees.

On Thursday it released a report on privacy concerns triggered by the advent of whole genome sequencing, determining someone's complete DNA make-up. Although sequencing "holds enormous promise for human health and medicine," commission chairwoman Amy Gutmann told reporters on Wednesday, there is a "potential for misuse of this very personal data."

"In many states someone can pick up your discarded coffee cup and send it for (DNA) testing," said Gutmann, who is the president of the University of Pennsylvania.

"It's not a fantasy to think about how, without baseline privacy protection, people could use this in a way that would be really detrimental," such as by denying someone with a gene that raises their risk of Alzheimer's disease long-term care insurance, or to jack up life insurance premiums for someone with an elevated genetic risk of a deadly cancer that strikes people in middle age.

"Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality, for example, about any discovered genetic variations that link to increased likelihood of certain diseases, such as Alzheimer's, diabetes, heart disease and schizophrenia," Gutmann said.

The commission took on the issue because whole genome sequencing is poised to become part of mainstream medical care, especially by personalizing medical treatments based on a patient's DNA.

$1,000 GENOME

That has been driven in large part by dramatic cost reductions, from $2.5 billion per genome in the Human Genome Project of the 1990s and early 2000s to $1,000 soon. Several companies, including Illumina Inc. and Life Technology's Ion Torrent division, sell machines that can sequence a genome for a few hundred dollars, but that does not include the analysis to figure out what the string of 3 billion DNA "letters" means.

A three-year-old federal law prohibits discrimination in employment or health insurance based on someone's genetic information but does not address other potential misuses of the data. Without such privacy protection, said Gutmann, people may be reluctant to participate in genetic studies that do whole genome sequencing, for fear their genetic data will not be secure and could be used against them.

Recommendations from such panels are not binding but have been used as the basis for policy and legislation.

One scenario the panel offers is a "contentious spouse" secretly having a DNA sample sequenced and using it in a custody battle "as evidence of unfitness to parent," perhaps because the DNA showed a genetic risk for mental illness or alcoholism. There are no federal laws against that.

Or, the panel said, DNA information might be posted in a social networking site "by a malicious stranger or acquaintance," possibly hurting someone's "chance of finding a spouse, achieving standing in a community, or pursuing a desired career path."

The bioethics panel recommends a dozen forms of privacy protection, including that "surreptitious commercial testing" be banned: No gene sequencing or other genetic testing should be permitted without consent from the person the DNA came from, it said. About 25 states currently allow such DNA testing.

Critics of the lack of genetic privacy thought greater urgency was needed.

"The report lays out a lot of important best practices and does endorse further state and federal regulations, but it doesn't offer a timeline," said Jeremy Gruber, president of the Council for Responsible Genetics, a private group that monitors genetic issues. "What will inevitably happen is whole genome sequencing will enter greater use and we won't have proper regulations to insure privacy."

A bill introduced in California, home to many DNA testing companies, by state Senator Alex Padilla would ban surreptitious testing, requiring written authorization from the person the genetic sample was taken from.

It is not clear how many labs are willing to analyze DNA without that authorization. In practice, well-known genetic testing companies such as privately held 23andMe test only saliva samples that are too large to acquire surreptitiously, such as from a drinking glass or licked stamp. "A person would really know that they are spitting into a tube," said 23andMe spokeswoman Jane Rubinstein.

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U.S. Panel Calls Huawei and ZTE ‘National Security Threat’

The House Intelligence Committee said that after a yearlong investigation it had come to the conclusion that the Chinese businesses, Huawei Technologies and ZTE Inc., were a national security threat because of their attempts to extract sensitive information from American companies and their loyalties to the Chinese government. The companies sell telecommunications equipment needed to create and operate wireless networks, like the ones used by Verizon Wireless and AT&T. Many of the major suppliers of the equipment are based outside the United States, creating concerns here about the security of communications. Those concerns are most acute about Huawei and ZTE because of their close ties to the Chinese government, which the committee said has heavily subsidized the companies. Allowing the Chinese companies to do business in the United States, the report said, would give the Chinese government the ability to easily intercept communications and could allow it to start online attacks on critical infrastructure, like dams and power grids. The release of the report comes as both presidential candidates have spoken of the importance of United States ties with China and have promised to act strongly on Chinese currency and trade practices that are damaging to American business interests. Mitt Romney, the Republican presidential candidate, has called repeatedly during his campaign for a more confrontational approach to China on business issues, although he has focused his warnings more on Chinese currency market interventions than on the activities of the nation’s telecommunications companies. President Obama has also taken a tougher stance on China recently. Late last month, Mr. Obama, through the Committee on Foreign Investment, ordered a Chinese company to divest itself of interests in four wind farm projects near a Navy base in Oregon where drone aircraft training takes place. It was the first time a president had blocked such a deal in 22 years. The Obama administration has also filed a case at the World Trade Organization in Geneva accusing China of unfairly subsidizing its exports of autos and auto parts, the ninth trade action the administration has brought against China. “We have a process that is not aimed at one specific company but using all the assets and parts of U.S. government aimed at protecting our telecommunications and critical infrastructure,” a senior White House official said. The report was released on Monday morning at a news conference held by Representative Mike Rogers, Republican of Michigan, the chairman of the House Intelligence Committee, and Representative C. A. Ruppersberger of Maryland, the top Democrat on the committee. They said that the United States government should be barred from doing business with Huawei and ZTE and that American companies should avoid buying their equipment. The report said the committee had obtained internal documents from former employees of Huawei that showed it supplied services to a “cyberwarfare” unit in the People’s Liberation Army. The United States government, the report said, should go through the Committee on Foreign Investment in the United States, an interagency panel that reviews the national security implications of foreign investments, to carry out its recommendations. It also said that committee should block any mergers and acquisitions involving the Chinese companies and American businesses. In the course of the investigation, the House committee said it had uncovered evidence of economic espionage — and officials said on Monday that they planned to hand over the evidence to the F.B.I. Former and current employees for Huawei, the report said, told investigators for the committee that the company had committed “potential violations” in the United States related to immigration, bribery, corruption and copyright infringement. Huawei has been the focus of criticism and security warnings for years, including by the Defense Department. Its expansion plans in the United States have faced resistance from Congress over questions about its ties to the military in China. Huawei denies being financed to undertake research and development for the Chinese military, and its executives have repeatedly insisted that they have nothing to hide. The company issued an open letter to the United States government in February 2011, asking for an inquiry to clear up what it characterized as misperceptions about its history and business operations.
Michael S. Schmidt reported from Washington and Christine Hauser from New York. Keith Bradsher contributed reporting from Hong Kong, and Quentin Hardy from San Francisco.

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