29 USC 1908 - Registry

(a) In general 
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.
(b) Voluntary provision of information 
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.
(c) Nondisclosure 
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.
(d) Privacy rights 
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.

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(e) Removal of information 
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.