S. 4249Senate116th Congress (2019-2021)In Committee

A bill to ensure the protection of human genetic information collected as a result of diagnostic testing for COVID-19.

AI-Generated Summary

Updated April 14, 2026 at 1:53 PM UTC

The bill requires the Department of Health and Human Services to protect any human genetic information gathered from COVID‑19 diagnostic testing. It bars anyone from collecting, storing, analyzing, sharing, or profiting from that genetic data unless the tested individual gives written, informed consent. The rule applies to all parties handling the data and targets non‑diagnostic or incidental uses.

Key Provisions

HHS must ensure that genetic information from COVID‑19 tests cannot be used for any purpose other than the test itself without the individual's explicit written consent.
Violators face a civil monetary penalty of up to $100 for each violation.
The bill defines “genetic information” by existing regulations and clarifies that “incidental” use means any use beyond the authorized testing purpose.

Legislative Activity

Stay on top of the latest movement without scrolling through every action

1 earlier action

SenateIntro Referral Latest Action

Read twice and referred to the Committee on Health, Education, Labor, and Pensions.

Health, Education, Labor, and Pensions Committee

July 21, 2020

View full timeline

SenateIntro Referral

Introduced in Senate

July 21, 2020

SenateIntro Referral

Read twice and referred to the Committee on Health, Education, Labor, and Pensions.

Health, Education, Labor, and Pensions Committee

July 21, 2020

Bill Text

Latest available legislative text

Reading Mode

Raw Text PDF XML

Introduced in SenateIssued July 21, 2020

116th CONGRESS

2d Session

S. 4249

IN THE SENATE OF THE UNITED STATES

July 21, 2020

Mr. Tillis introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions

A BILL

To ensure the protection of human genetic information collected as a result of diagnostic testing for COVID–19.

Protection of human genetic information

(a)

In general

Notwithstanding any other provision of law, the Secretary of Health and Human Services shall ensure that no person may collect, store, analyze, disseminate, or otherwise make use of, or benefit from, any human genetic information collected as a result of diagnostic testing for COVID–19, for any incidental use, or any reason other than such diagnostic or serologic testing, except with the express, written, informed consent of the individual being tested.

(b)

Enforcement

Any person who violates subsection (a) shall be subject to a civil monetary penalty of not more than $100 for each such violation.

(c)

Definitions

In this section—

(1)

the term genetic information has the meaning given such term in section 160.103 of title 45, Code of Federal Regulations (or any successor regulations); and

(2)

the term incidental means any action taken by any person, directly or indirectly, to obtain genetic information from an individual, for any purpose, other than the purpose specifically authorized by the living individual from whom the specimen has its biological origin or another designated individual if the individual is a minor or is incapacitated, or if the individual is deceased, the individual’s next of kin.