29 U.S. Code § 1908 - Registry
To assist the Center in providing services to individuals who are deaf-blind, the Center may establish and maintain registries of such individuals in each of the regional field offices of the network of the Center.
No individual who is deaf-blind may be required to provide information to the Center for any purpose with respect to a registry established under subsection (a) of this section.
The Center (including the network of the Center) may not disclose information contained in a registry established under subsection (a) of this section to any individual or organization that is not affiliated with the Center, unless the individual to whom the information relates provides specific written authorization for the Center to disclose the information.
The requirements of section 552a of title 5 (commonly known as the “Privacy Act of 1974”) shall apply to personally identifiable information contained in the registries established by the Center under subsection (a) of this section, in the same manner and to the same extent as such requirements apply to a record of an agency.
On the request of an individual, the Center shall remove all information relating to the individual from any registry established under subsection (a) of this section.