Re: Sizing Up the Family Gene Pool

In response to the New York Times article: Sizing Up the Family Gene Pool

This story is about the fact that genetic testing companies sell people’s test results, compromising families’ and descendants’ future jobs and opportunities. “The NYTimes Ethicist” confirmed a questioner’s fears:

“As for the privacy issue, your concern is well founded. Many of these companies do use customers’ data for medical research or commercial applications, or they sell it to third parties whose interests you might never know. Legally they can’t do that without your consent, but the fine print on those consent forms goes by so quickly that it can be hard to follow.”

Americans’ lack of control over sensitive personal health information in electronic systems is a true national disaster. Not everyone knows this yet, but President Obama does.

On Feb 22, the he introduced historic new privacy principles to guide the use of personal data in the global digital economy. He recognized the lack of privacy in current networked technologies and systems has severe economic consequences. See story on the White House Initiative: http://patientprivacyrights.org/2012/02/wh-initiative-consumer-privacy-bill-of-rights/

President Obama’s new principles address the causes of the privacy violation in the story:

  • Current federal law does not protect the right to health information privacy or the right of consent to use health data
  • neither HIPAA nor Genetic Information Non-Discrimination Act (GINA) prevent the systemic corporate business practice of selling Americans’ highly sensitive personal health information (like genetic test results)

He laid out an historic, tough new Consumer Privacy Bill of Rights to stop the data mining and data theft industries. The first principle is that of individual control: “Consumers have a right to exercise control over what personal data companies collect from them and how they use it.”

Key quotes from the Administration’s new “Framework for Protecting Privacy and Promoting Innovation in the Global Digital Economy”:

  • “Strong consumer data privacy protections are essential to maintaining consumers’ trust in the tech­nologies and companies that drive the digital economy.”
  • The President concluded, “It [privacy] has been at the heart of our democracy from its inception, and we need it now more than ever.”

The only way we can trust the Internet and have a vibrant global digital economy is if individuals control personal information online and in electronic systems. The right of informed consent before personal information is collected or used must be restored.

When will the health IT industry, Congress, and lawmakers across the US act to restore the right to privacy and control over personal information?

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