Medical and Genetic Privacy
Medical and genetic information can reveal some of the most personal and private data about us, and maintaining control over that information is crucial. As medical records are increasingly digitized and genetic sequencing becomes faster and cheaper, threats to our privacy and autonomy intensify. Whether it is police seeking to search medical records or conduct DNA tests without a warrant, or private corporations patenting human genes, the ACLU is standing up for your rights.
The ACLU has long fought to preserve the privacy of sensitive medical records and genetic information. For example, in Oregon Prescription Drug Monitoring Program v. Drug Enforcement Administration, we argued that law enforcement must get a probable cause warrant from a judge before requesting confidential prescription records from a state prescription tracking database. In Maryland v. King, we filed a brief in the U.S. Supreme Court opposing the drastic expansion of state DNA databases to include DNA samples from people who have been arrested but not yet convicted. In a 2004 case, we even asked a Florida court to protect the confidentiality of Rush Limbaugh’s medical records against unreasonable government search.
We have also consistently opposed attempts to infringe on people’s autonomy in making medical decisions. In 1965, the ACLU filed a friend-of-the-court brief in Griswold v. Connecticut, a landmark case where the Supreme Court struck down a state prohibition on the prescription, sale, or use of contraceptives, even for married couples, and recognized a right to privacy surrounding intimate medical and family planning decisions. More recently, in Association for Molecular Pathology v. Myriad Genetics, the ACLU successfully persuaded the Supreme Court to invalidate patents on two genes associated with hereditary breast and ovarian cancer, thus removing barriers to scientific research and treatment.
- News/Press ReleaseJuly 28, 2016
- Legal DocumentFebruary 11, 2014
ACLU Files Complaint Against Lab that Refuses to Recognize Patients’ Right to Their Own Genetic InformationNews/Press ReleaseMay 19, 2016
Oregon Prescription Drug Monitoring Program v. Drug Enforcement Administration - Declaration of Dr. James Roe in Support of Motion to File Complaint in Intervention using PseudonymsLegal DocumentJanuary 25, 2013
- CaseJuly 13, 2017
- CaseJune 26, 2017
Henrietta Lacks’ Story Is a Powerful Lesson That Patients Deserve Full Control of Their Genetic DataBlog Post - Speak FreelyApril 26, 2017