Everyone receiving health care has a right to privacy when it comes to medical information. This right is especially important to people with mental illnesses because of the stigma associated with their condition. People are often denied jobs, housing, educational or social opportunities when their mental illness is disclosed. Fear of disclosure discourages many from seeking mental health care. Compromising current privacy protections would discourage them even more.

In emergency situations, limited disclosures of private medical information can be made. When such disclosure is necessary, consent from the individual receiving treatment should first be sought, if feasible. Additionally, mental health treatment providers should discuss with consumers in advance their rights with respect to privacy, limitations on those rights, and who they want to be contacted in an emergency.  While it may be appropriate to release confidential information to family members in an emergency situation, treatment providers must consider whether such a disclosure may exacerbate the situation or damage the therapeutic relationship between the provider and the consumer.

Some complain that privacy laws prevent multiple agencies from sharing information about an individual that would allow them to coordinate their efforts. More often than not, consumer consent for information-sharing can be secured if consumers are informed about the importance of service coordination, the obligations of recipients of the information to preserve confidentiality, and consumers’ rights to control the types of information to be shared.  Research shows that people with mental illnesses are as competent to make decisions about their medical privacy as other people who receive medical care. It is not always the case, however, that such sharing benefits people with mental illnesses. For example, individuals confined in jail are often treated worse – by the jail, lawyers, and judges – if their mental illness is disclosed.

Each state has its own privacy laws and these protections vary. In addition, federal law plays a role in privacy matters. The Health Insurance Portability and Accountability Act (HIPAA) sets a national minimum standard for privacy protection. It also provides the right for individuals to review their own records and submit corrections if warranted.  Federal law provides special protections for records of substance abuse treatment.

Furthermore, privacy of genetic information is an area of increasing concern. In 2008, the Genetic Information Nondiscrimination Act became law, prohibiting health insurers and employers from discriminating on the basis of genetic information. Interim final regulations for its implementation to protect consumers were issued on October 2, 2009.

Overall, the Bazelon Center believes that people with mental illnesses should be able to control access to information about their treatment.



In 2008, the Genetic Information Nondiscrimination Act became law, prohibiting health insurers and employers from discriminating on the basis of genetic information.

Read a Summary of the Act


In March of 2017, as a part of their efforts to repeal and replace Obamacare, the G.O.P. introduced the Preserving Employee Wellness Programs Act. The bill was “aimed at making it easier for companies to gather genetic data from workers and their families, including their children.”

The Bazelon Center opposed this bill and our own Deputy Legal Director, Jennifer Mathis, was quoted in this New York Times Article as a voice of opposition.