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"A federal law designed to prevent employers and health insurers from discriminating against an individual based on their genetic predisposition to disease took effect late last month, signaling a new era where intermingling genetic advances and privacy concerns create new challenges in health care. But left out of the federal Genetic Information Nondiscrimination Act, commonly known as GINA, were privacy protections for individuals seeking long-term care, disability and life insurance coverage. Each of those areas was left up to the individual states. At least 10 states regulate the use of genetic information in long-term care insurance. But in California, privacy protections were left to expire by lawmakers in January 2008. Mark Billingsley, spokesman for state insurance commissioner Steve Poizner, said in an e-mail that there "appears to be a giant loophole" in California's insurance code regarding long-term care insurance and genetic privacy protections. He said he couldn't identify a single provision in the state code that would preclude a private insurer from requesting such a test for underwriting purposes. "

Taking genetic tests to assess potential health risks could mean cheaper medical insurance even if the results are not disclosed, a senior industry executive has told The Times. Customers who take personal DNA scans will pay lower premiums because insurers believe that they encourage a healthier lifestyle, according to Gil Baldwin, the managing director of Norwich Union Healthcare. The advent of tests for DNA variants that affect common disorders such as diabetes and heart disease has prompted fears of discrimination and the creation of a "genetic underclass" who cannot buy cover. Mr Baldwin insisted that his company did not see genetics as a tool for cherry picking low-risk customers but as a way of helping them to manage and reduce their risk of disease with the aim of lowering costs for both parties. In an interview with The Times, he said that people who take genetic screening are likely to act on the results and therefore present a much better risk profile. Insurers will reflect this in premiums, regardless of whether results are disclosed.

"The school's policy seems to violate the Genetic Information Nondiscrimination Act (GINA), says Susannah Baruch of the Genetics and Public Policy Center at Johns Hopkins University. "Most generally," she says, "GINA prohibits health insurers and employers from using your genetic information against you." The law went fully into effect Nov. 21, and it prevents health insurers from collecting genetic information to make decisions about the insurance people get or how much it costs. The law also says an employer can't use it to make decisions about hiring, firing or job promotions. There are a few exceptions. The law doesn't apply to employers with fewer than 15 workers. And while it covers health insurance, it doesn't apply to life or long-term care insurance."

In April 2008, the blogosphere was abuzz with news that someone was auctioning then-candidate Barack Obama's half-eaten breakfast on eBay, along with silverware purported to contain his DNA. This episode led some to speculate that the DNA of one or both of the presidential candidates would be surreptitiously analysed and their genetic information broadcast before the election for all to examine. Although this scenario did not take place during this election cycle, it is well within the realm of technological possibility. Every day, we shed millions of cells during ordinary activities - licking envelopes, blowing our nose, combing hair. These cells may seem to be mere human detritus, but our biological trash could be a gold mine for information prospectors looking for clues to our health or ancestry. And as an investigation in the latest issue of New Scientist magazine found, there already is a vibrant industry offering covert DNA tests to confirm infidelity and parentage. We have reached this point through technological advances in laboratory genetic analysis, dramatically reduced costs for the analysis and an almost complete absence of rules governing the legal status of "abandoned DNA."

Last week, the government took another step toward closing a legal loophole in federal privacy and security rules for emerging Health 2.0 information technology applications by issuing proposed rules aimed at covering an estimated 900 companies and organizations offering personal health records and electronic systems connected to them. The Federal Trade Commission was careful to point out its new interim proposed rule on federal breach notification requirements for the developers of electronic PHR systems did not apply to covered organizations or their business associates as defined by the Health Insurance Portability and Accountability Act of 1996, heretofore the key federal privacy and security regulation. The FTC, operating under new authority given it by the American Recovery and Reinvestment Act of 2009, noted that its new rule seeks to cover previously unregulated entities that are part of a Health 2.0 product mix. FTC staff estimates that about 200 PHR vendors, another 500 related entities and 200 third-party service providers will be subject to the new breach notification rule. The staffers estimate that the 900 affected companies and organizations, on average, will experience 11 breaches each per year at a total cost of about $1 million per group, per year. Costs include investigating the breach, notifying consumers and establishing toll-free numbers for explaining the breaches and providing additional information to consumers. Pam Dixon, founder and executive director of the World Privacy Forum, said that this isn't the first involvement of the FTC in healthcare-related regulation, noting the consumer protection agency joined with the Food and Drug Administration in a joint statement on the marketing of direct-to-consumer genetic tests. The FTC also has worked in the field of healthcare competition. She noted the compliance deadline with the FTC's "red flag rules" on provider organizations that provide consumer credit to patients for installment payment

U.S. law enforcement officials have expanded their DNA databases to include not only those convicted, but also those arrested but not yet tried. The New York Times reported Saturday the practice has drawn criticism from people who say offenders are presumed innocent. The newspaper said starting this month, the Federal Bureau of Investigation will join 15 states that collect DNA samples from those awaiting trial and will also collect DNA from detained immigrants. The FBI, which already has a DNA database of 6.7 million profiles, expects to add 1.2 million new entries by 2012. "DNA databases were built initially to deal with violent sexual crimes and homicides -- a very limited number of crimes," said Harry Levine, a professor of sociology at City University of New York. "Over time more and more crimes of decreasing severity have been added to the database. Cops and prosecutors like it because it gives everybody more information and creates a new suspect pool." Courts have generally upheld laws authorizing DNA collection from convicts and ex-convicts under supervised release, finding that criminal acts diminish privacy rights.

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