Home : Privacy & Technology : Medical Privacy

Medical information is arguably the most personal and private sources of data about us. Yet privacy protections in this area are far from adequate.

The relentless commercialization of information has also led to the breakdown of some longstanding traditions, such as doctor-patient confidentiality. Citizens share some of their most intimate and embarrassing secrets with their doctors on the oldfashioned assumption that their conversations are confidential. Yet those details are routinely shared with insurance companies, researchers, marketers, and employers.

The ACLU's Views on Atlanta Man's Quarantine Case
The CDC invoked its authority under federal law last week to hold an unnamed Atlanta man in isolation in New York City and later an Atlanta hospital. The patient was reportedly contacted by CDC while traveling in Europe and informed that unrelated medical tests had indicated that he had a dangerous, drug-resistant form of tuberculosis.
> Statement of Barry Steinhardt
> FAQs on New Medical Privacy Laws
> Q&A on Emergency Health Powers

ACLU Reacts to Extortion of Private Medical Records (11/07/2008)
WASHINGTON – In response to today’s news that the FBI is investigating an extortion letter threatening the release of millions of private medical records, the ACLU reiterates its demand for the protection of individual privacy for all electronic medical records. Express Scripts, a medical benefits management company, said it has been investigating the threat since October, when the extortion letter was received containing the names, dates of birth and social security numbers of approximately 75 clients. Express Scripts then notified the FBI, and has since ruled out the possibility of an internal breach.

Fusion Centers Part of Incipient Domestic Intelligence System, ACLU Warns (07/29/2008)
WASHINGTON – The nation’s growing network of “fusion centers” is part of an incipient de facto domestic intelligence system, according to the American Civil Liberties Union. Today the ACLU released a report detailing spying on Maryland peace demonstrators, a mysterious domestic-spying scandal at a California military base and other recent incidents, confirming that its warnings about fusion centers were coming true.

ACLU Urges Congress to Define Medical Privacy as Patient Control of Electronic Health Records (07/23/2008)
Washington, DC – The American Civil Liberties Union today urges the House Energy and Commerce Committee to require patient control of medical records and compensation for privacy breaches to be a part of the standards set for converting to electronic patient records. The ACLU cautions that H.R. 6357, the “Protecting Records, Optimizing Treatment, and Easing Communication through Healthcare Technology Act of 2008” or the PRO(TECH)T Act, has insufficient privacy provisions and leaves patients vulnerable to bad, lost, stolen or misused data.

ACLU Urges Congress to Ensure Privacy of Electronic Health Records (06/25/2008)
Washington, DC – Today, lawmakers will be making decisions about the future of patients’ medical privacy as legislation aimed at pushing the health care industry toward a conversion from paper to electronic health records is due for a vote by a House panel.

ACLU Urges Congress to Maximize Medical Privacy of Electronic Health Records (06/04/2008)
Washington, DC—The American Civil Liberties Union urges the House Energy and Commerce Subcommittee on Health at today’s hearing to develop privacy and security standards at the same time the health care industry converts from paper to electronic patient records. The ACLU warns that without real patient controls and compensation for misused data, American medical records are extremely vulnerable to being lost or stolen from these systems.

Pandemic Preparedness: The Need for a Public Health — Not a Law Enforcement/National Security — Approach (01/14/2008)

Bigger Monster, Weaker Chains: The Growth of an American Surveillance Society (01/15/2003)

The Maryland Lesson: Conducting Effective HIV Surveillance with Unique Identifiers (12/04/1997)
Since June 1, 1994, the State of Maryland has utilized a Unique Identifier system to conduct HIV surveillance. As part of the ongoing public discussion about how to best expand HIV surveillance across the country to understand the changing epidemic, it is useful to evaluate Maryland's experience to determine whether Unique Identifiers form a viable surveillance option.

HIV Surveillance and Name Reporting: A Public Health Case for Protecting Civil Liberties (10/04/1997)
Recently, there have been renewed calls for HIV surveillance, and specifically for reporting the names of all those who test positive for HIV to public health authorities. Proponents of HIV surveillance and name reporting frequently suggest that there is a conflict between the privacy rights of individuals who have or may have HIV and the public health needs of the country, and that individual civil liberties must take a back seat in order to effectively battle the spread of HIV and AIDS.

ACLU Letter to the House Energy and Commerce Committee Commenting on Discussion Draft of Health Information Technology Legislation (06/13/2008)

ACLU Complaint in Folley v. United Surgical Partners, et al., (06/10/2005)

ACLU Brief in Weber v. Lockyer (12/08/2004)

ACLU Brief in Terri Schiavo Case (05/20/2004)

Florida Court Decision in Terri Schiavo Case (05/20/2004)

ACLU Comments on National Institutes of Health Data Sharing (11/30/2006)

The ACLU's Chris Calabrese's Testimony Before the NCVHS (02/18/2004)

ACLU Letter to the House Judiciary Committee Expressing Concerns about HR 3214, the Advancing Justice through DNA Technology Act of 2003 (10/08/2003)

Letter to the House Regarding HR 4700, the Personal Responsibility, Work, and Family Promotion Act of 2002 (05/14/2002)

Submission of the American Civil Liberties Union in response to the request by the U.S. Department of Health and Human Services at 67 Fed. Reg. 14776 (March 27, 2002) for Comments Regarding Proposed Modifications to the Final Rule on Standards for Privacy of Individually Identifiable Health Information (04/26/2002)

ACLU Letter to FTC Re: Eli Lilly (07/05/2001)
Timothy MurisChairmanFederal Trade Commission600 Pennsylvania AvenueWashington DC 20580

The Medical Privacy Regulation's Impact on Women's Health (04/01/2001)
Ensuring Medical Privacy

Medical Privacy and Electronic Records (07/22/2008)
Legislation aimed at pushing doctors and reluctant health care providers toward a conversion from paper to electronic health records stored in searchable web-based databases is moving through Congress. A key House panel is voting tomorrow on its proposal.

FAQ On Access to Patient Information by Friends and Family (07/15/2003)
Frequently Asked Questions about Access to Patient Information by Family, Friends, and Others under the HIPAA Privacy Rule

FAQ on Government Access to Medical Records (05/30/2003)
Answers to Frequently Asked Questions about Government Access to Personal Medical Information (under the USA Patriot Act and the HIPAA regulations)

Model State Emergency Health Powers Act (01/01/2002)
Model State Emergency Health Powers Act