ENTRIES TAGGED "HIPAA"

Privacy concerns and regulatory challenges in personalized medicine

Ann Waldo examines obstacles to patient data and offers specific reforms that can help.

Ann Waldo, a partner in Wittie, Letsche & Waldo, LLP in Washington, DC, presents a summary of her work in the webcast “Overview of Privacy Concerns and Regulatory Challenges Concerning Personalized Medicine — and Some Modest Suggestions for Change.” This was part of the Strata Rx Online Conference: Personalized Medicine, a preview of O’Reilly’s conference Strata Rx, highlighting the use of data in medical research and delivery.

Waldo highlighted how HIPAA regulations and other laws passed by federal and state governments contain restrictions that make research with patient data unnecessarily difficult. She offers several suggestions for reform.

Key points from her presentation include: Read more…

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Balancing health privacy with innovation will rely on improving informed consent

In the age of big data, Deven McGraw emphasizes trust, education and transparency in assuring health privacy.

Society is now faced with how to balance the privacy of the individual patient with the immense social good that could come through great health data sharing. Making health data more open and fluid holds both the potential to be hugely beneficial for patients and enormously harmful. As my colleague Alistair Croll put it this summer, big data may well be a civil rights issue that much of the world doesn’t know about yet.

This will likely be a tension that persists throughout my lifetime as technology spreads around the world. While big data breaches are likely to make headlines, more subtle uses of health data have the potential to enable employers, insurers or governments to discriminate — or worse. Figuring out shopping habits can also allow a company to determine a teenager was pregnant before her father did. People simply don’t realize how much about their lives can be intuited through analysis of their data exhaust.

To unlock the potential of health data for the public good, informed consent must mean something. Patients must be given the information and context for how and why their health data will be used in clear, transparent ways. To do otherwise is to duck the responsibility that comes with the immense power of big data.

In search of an informed opinion on all of these issues, I called up Deven McGraw (@HealthPrivacy), the director of the Health Privacy Project at the Center for Democracy and Technology (CDT). Our interview, lightly edited for content and clarity, follows. Read more…

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