Consumer Advocate: Patient Consent Vital

Deborah Peel, M.D., founder of Patient Privacy Rights, on protecting the privacy of healthcare information.
Listen to the Interview Here.

Patients have inadequate control over who can access their healthcare information, but existing technologies can solve the problem, says consumer advocate Deborah Peel, M.D.

Her organization, Patient Privacy Rights, recently issued a white paper outlining an approach to giving patients opportunities to offer informed consent for accessing their records. In an interview, Peel outlined the key points in the report…

View a PDF version of the white paper: The Case for Informed Consent
Listen to the interview: Patient Consent Vital

Indian Tribe Wins Fight to Limit Research of Its DNA

This article from the New York Times, Indian Tribe Wins Fight to Limit Research of Its DNA, shows how patients are willing to opt in to certain research, but are outraged when their information is used for research and other purposes they are unaware of.

“SUPAI, Ariz. — Seven years ago, the Havasupai Indians, who live amid the turquoise waterfalls and red cliffs miles deep in the Grand Canyon, issued a “banishment order” to keep Arizona State University employees from setting foot on their reservation — an ancient punishment for what they regarded as a genetic-era betrayal.

Members of the tiny, isolated tribe had given DNA samples to university researchers starting in 1990, in the hope that they might provide genetic clues to the tribe’s devastating rate of diabetes. But they learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.

The geneticist responsible for the research has said that she had obtained permission for wider-ranging genetic studies.

Acknowledging a desire to “remedy the wrong that was done,” the university’s Board of Regents on Tuesday agreed to pay $700,000 to 41 of the tribe’s members, return the blood samples and provide other forms of assistance to the impoverished Havasupai — a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used…”

DoD does WHAT?

It is fascinating that the DoD clearly believes it owns and can use the personal health information of 12 million active duty military personnel for whatever purpose it decides. In this case, the DoD is paying a for-profit corporation to do research on active duty military personnel without their consent.

Maybe when you join the military you lose all privacy and Constitutional rights. I don’t know, I’m not a lawyer. If so, that is a steep price to pay to serve your country: losing all health privacy for yourself and your relatives forever. Do those who join the armed forces know they are signing up to become medical guinea pigs? Do they really understand the consequences for their futures and their families futures?

Many questions abound:

• Are the electronic records adequately secured? What a rich target: 12 million health records! What if enemies hack the privately held data base to learn about key military leaders?

• Will Phase Forward continue to use and sell the records for other purposes as HIPAA authorizes? Other data management corporations (such as Thomson Medstat) the government pays to perform fraud and waste audits obtain millions of health records that they later aggregate and sell to employers without anyone’s consent.

• Furthermore–this is clearly medical research without informed consent. That is simply unethical and illegal. The US signed the Declaration of Helsinki after WW II because Nazis did human research without consent. Back then America recognized the need for informed consent before research takes place. Today, the codes of research and medical ethics still require patients to give informed consent before personal records can be used or disclosed. Why is this project not being done with informed consent when new ‘smart’ electronic consent tools could make it easy, cheap, and fast to obtain informed consent and explain all the risks and consequences?

Review this article from the Washington Post’s Government Inc. Blog for more information:
Data Mining for DoD Health

Electronic Health Records wired for abuse

“Oops! They did it to Britney again.” No, it’s not a song parody, but a reflection of the poor state of American health privacy – something Bay Staters should think about as their Legislature considers a bill to mandate Electronic Health Records (EHRs).

Staff members at UCLA’s Medical Center are under investigation over allegations staffers accessed Britney Spears’ medical records earlier this year. Sadly, this is not the first time individuals other than the paparazzi violated Spears’ privacy; staffers also took inappropriate peeks when her first child was born.

Most Americans think the Health Insurance Portability and Accountability Act (HIPAA) protects their privacy and that the HIPAA notice they sign at the doctor’s office lists all of their rights to privacy. In fact, that HIPAA notice lists the vast number of ways their private health information can be used, without asking and over objections.

HIPAA was originally intended to protect privacy. Regulators earlier in this decade rewrote the rule to sanction disclosure of medical information for treatment, payment or health care operations.

“Particularly troubling about HIPAA’s Privacy Rule is the governmental authorization for covered entities to use patients’ confidential information without their consent for health care operations that are unrelated to “payment or treatment,” writes Dr. Richard Sobel, senior research associate in the Program in Psychiatry and the Law at Harvard Medical School. Sobel explains that “health-care operations” can include using information for marketing purposes, which normally would require written consent.

Data-mining firms were given a gift by the rewriting of the HIPAA Privacy Rule. Data-mining firms can obtain information about your prescriptions, treatment for mental health and genetic predisposition to illnesses. That information can be passed on to credit firms, marketing firms and even prospective employers.


Patients need progress and privacy in this digital era. The only way to ensure we get both, and avoid the negative “celebrity treatment” Spears received, is to ensure the health IT bill signed by the governor fully recognizes the right of patient consent.

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