Consumers have a right to their genomes

Personal Genomics: Access Denied?

Consumers have a right to their genomes.

By Misha Angrist

Technology Review


In April, a startup company called Navigenics threw a swanky 10-day celebration in lower Manhattan to launch its highly publicized personal-genomics service, which offers genetic risk assessments for 21 complex health conditions--such as heart attack and diabetes--that are partly mediated by multiple genes. (I received complimentary genotyping from Navigenics; it normally costs $2,500.) Unbeknownst to attendees, the New York State Department of Health had sent a warning letter a few days earlier to the company and 22 others that offer similar products, telling them that they needed a permit before they could sell their services. New York-based party goers would be unable to partake in Navigenics' testing.


Read the entire article at Technology Review


More info:

"Letting the Genome Out of the Bottle—Will We Get Our Wish?"
By David J. Hunter, Muin J. Khoury, and Jeffrey M. Drazen
New England Journal of Medicine, January 10, 2008

Australia: Smart-card privacy warning for patients

Smart-card privacy warning for patients
Article published at The Australian by Adam Cresswell, Health editor
February 22, 2007

PATIENTS have been warned to be careful about loading health information on to the federal Government's proposed Access smart card, after an official taskforce looking into the card's uses warned of potential privacy breaches.

The Access Card Consumer and Privacy Taskforce yesterday called on the Government to reiterate that the card was not an electronic health record.

The taskforce set up by the Government to sort out how the card should operate said in a discussion paper released yesterday that cardholders who chose to put health information on the card's chip "must accept they are putting sensitive personal information, effectively, into the public domain".

The card is designed to replace the existing Medicare card and up to 16 other magnetic-stripe cards that give access to a range of health and other benefits, such as Centrelink and veterans' payments. The Government claims it will save $3billion in fraud over 10 years.

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HHS, GAO criticized over privacy report

HHS, GAO criticized over privacy report
Published at ModernHealthcare.com by: Joseph Conn

Last week, the Government Accountability Office issued a mild rebuke to HHS over its handling of privacy and security issues while the department leads the federal effort to promote development of a national healthcare information network.

Reaction to the GAO report within the privacy community was far more strident. In fact, both HHS and the GAO were zinged with criticism.

The 52-page GAO report, issued Thursday, was the focus of discussion the following day in Washington at a meeting of the Senate subcommittee on federal government management, the federal workforce and the Senate Committee on Homeland Security and Governmental Affairs.

Read the full article

Links:

Personal Health Records and Personal Health Records Systems

US Department of Health and Human Services