PRIA, Government Policy, Made Personal

Summary

Require employers, employment agencies, labor unions, and joint labor-management committees to keep any genetic information about an employee or member on separate forms and in separate medical files. They must treat that information as a private medical record. Keeping it as a confidential medical record under section 12112(d)(3)(B) also meets this rule. Prohibit sharing genetic information except in a few cases: if the employee or union member asks in writing (or a family member is getting the genetic service); for occupational or health research that follows the rules in part 46 of title 45, Code of Federal Regulations; when a court orders it (only the exact information the order allows, and if the order was issued without the person’s knowledge the employer must tell the person and what was disclosed); for government officials investigating compliance if the info is relevant; to meet certification rules in section 2613 of title 29 or similar state family and medical leave laws; or to public health agencies about the type of information in 2000ff(4)(A)(iii) when the disease is contagious and poses an imminent risk of death or life‑threatening illness (the employee must be notified). If a health care “covered entity” is subject to HHS rules under part C of title XI (42 U.S.C. 1320d et seq.) and section 264 of HIPAA (42 U.S.C. 1320d–2 note), those HHS rules still allow uses or disclosures they permit, and the HHS Secretary can modify those rules.

Title 42, §2000ff–5

The Public Health and Welfare, Source: USLM XML via OLRC

(a)If an employer, employment agency, labor organization, or joint labor-management committee possesses genetic information about an employee or member, such information shall be maintained on separate forms and in separate medical files and be treated as a confidential medical record of the employee or member. An employer, employment agency, labor organization, or joint labor-management committee shall be considered to be in compliance with the maintenance of information requirements of this subsection with respect to genetic information subject to this subsection that is maintained with and treated as a confidential medical record under section 12112(d)(3)(B) of this title.

(b)An employer, employment agency, labor organization, or joint labor-management committee shall not disclose genetic information concerning an employee or member except—

(1)to the employee or member of a labor organization (or family member if the family member is receiving the genetic services) at the written request of the employee or member of such organization;

(2)to an occupational or other health researcher if the research is conducted in compliance with the regulations and protections provided for under part 46 of title 45, Code of Federal Regulations;

(3)in response to an order of a court, except that—

(A)the employer, employment agency, labor organization, or joint labor-management committee may disclose only the genetic information expressly authorized by such order; and

(B)if the court order was secured without the knowledge of the employee or member to whom the information refers, the employer, employment agency, labor organization, or joint labor-management committee shall inform the employee or member of the court order and any genetic information that was disclosed pursuant to such order;

(4)to government officials who are investigating compliance with this chapter if the information is relevant to the investigation;

(5)to the extent that such disclosure is made in connection with the employee’s compliance with the certification provisions of section 2613 of title 29 or such requirements under State family and medical leave laws; or

(6)to a Federal, State, or local public health agency only with regard to information that is described in section 2000ff(4)(A)(iii) of this title and that concerns a contagious disease that presents an imminent hazard of death or life-threatening illness, and that the employee whose family member or family members is or are the subject of a disclosure under this paragraph is notified of such disclosure.

(c)With respect to the regulations promulgated by the Secretary of Health and Human Services under part C of title XI of the Social Security Act (42 U.S.C. 1320d et seq.) and section 264 of the Health Insurance Portability and Accountability Act of 1996 (42 U.S.C. 1320d–2 note), this chapter does not prohibit a covered entity under such regulations from any use or disclosure of health information that is authorized for the covered entity under such regulations. The previous sentence does not affect the authority of such Secretary to modify such regulations.

Notes & Related Subsidiaries

Editorial Notes

References in Text

section 12112(d)(3)(B) of this title, referred to in subsec. (a), was in the original “section 102(d)(3)(B) of the Americans With Disabilities Act”, and was translated as meaning “section 102(d)(3)(B) of the Americans With Disabilities Act of 1990” to reflect the probable intent of Congress. The Social Security Act, referred to in subsec. (c), is act Aug. 14, 1935, ch. 531, 49 Stat. 620. Part C of title XI of the Act is classified generally to part C (§ 1320d et seq.) of subchapter XI of chapter 7 of this title. For complete classification of this Act to the Code, see section 1305 of this title and Tables. section 264 of the Health Insurance Portability and Accountability Act of 1996, referred to in subsec. (c), is section 264 of Pub. L. 104–191, which is set out as a note under section 1320d–2 of this title.

Statutory Notes and Related Subsidiaries

Effective Date

Section effective 18 months after May 21, 2008, see section 213 of Pub. L. 110–233, set out as a note under section 2000ff of this title.

§2000ff–5 Confidentiality of Genetic Information