S.Amdt. 1960

SA 1960. Mr. RUBIO submitted an amendment intended to be proposed to
amendment SA 1502 proposed by Mr. Schumer to the bill S. 1260, to
establish a new Directorate for Technology and Innovation in the
National Science Foundation, to establish a regional technology hub
program, to require a strategy and report on economic security,
science, research, innovation, manufacturing, and job creation, to
establish a critical supply chain resiliency program, and for other
purposes; which was ordered to lie on the table; as follows:

At the appropriate place in subtitle A of title I of
division F, insert the following:

SEC. __. ESTABLISHMENT OF WORKING GROUP.

(a) Establishment of Working Group.--Not later than 120
days after the date of enactment of this Act, the Secretary
of Health and Human Services (referred to in this section as
the ``Secretary'') shall establish a working group (in this
Act referred to as the ``Working Group'') in the Department
of Health and Human Services to make recommended updates to
the National Institute of Health's Genomic Data Sharing
Policy and to that end, develop and disseminate best
practices on data sharing for use by entities engaged in
biomedical research and international collaboration to enable
both academic, public, and private institutions to--
(1) protect intellectual property;
(2) weigh the national security risks of potential
partnerships where individually identifiable health
information (for purposes of this section, as defined by
section 160.103 of title 45, Code of Federal Regulations (or
any successor regulations)), of the people of the United
States is exchanged; and
(3) protect the individually identifiable health
information of the people of the United States.
(b) Membership.--
(1) Composition.--The Secretary shall, after consultation
with the Director of the National Science Foundation and the
Attorney General, appoint to the Working Group--
(A) individuals with knowledge and expertise in data
privacy or security, data-sharing, national security, or the
uses of genomic technology and information in clinical or
non-clinical research;
(B) representatives of national associations representing
biomedical research institutions and academic societies;
(C) representatives of at least 2 major genomics research
organizations from the private sector; and
(D) representatives of any other entities the Secretary
determines appropriate and necessary to develop the best
practices described in subsection (a).
(2) Representation.--In addition to the members described
in paragraph (1), the Working Group shall include not less
than one representative of each of the following:
(A) The National Institutes of Health.
(B) The Bureau of Industry and Security of the Department
of Commerce.
(C) The National Academies of Science, Engineering, and
Mathematics.
(D) The Department of State.
(E) The Department of Justice.
(F) The Office of the National Coordinator for Health
Information Technology.
(G) The Defense Advanced Research Projects Agency.
(H) The Department of Energy.
(3) Date.--The appointments of the members of the Working
Group shall be made not later than 90 days after the date of
enactment of this Act.
(c) Duties of Working Group.--
(1) Study.--The Working Group shall study--
(A) the transfer of data between private, public, and
academic institutions that partake in science and technology
research and their research partners, with a focus on
entities of the People's Republic of China and other foreign
entities of concern, including a review of what circumstances
would constitute a transfer of data;
(B) best practices regarding data protection to help
private, public, and academic institutions that partake in
biomedical research decide how to weigh and factor national
security into their partnership decisions and, through
research collaborations,

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what steps the institutions can take to safeguard data,
particularly genomic data;
(C) recommendations regarding areas where Federal agencies
can coordinate to increase education to such private and
academic research institutions that partake in science and
technology research to ensure the institutions can better
protect themselves from economic threats with a strengthened
understanding of intellectual property rights, research
ethics, and the risk of intellectual property theft, as well
as education on how to recognize and report such threats; and
(D) other risks and best practices related to information
and data sharing, as identified by the Working Group,
including any gaps in current practice that could be
addressed by congressional action.
(2) Report.--
(A) In general.--Not later than 1 year after the date of
enactment of this Act, the Working Group shall submit a
report that contains a detailed statement of the findings and
conclusions of the Working Group, together with
recommendations to update the National Institute of Health's
Genomic Data Sharing Policy and subsequent nonbinding
guidance regarding risks and safeguards for data sharing with
foreign entities for research institutions in the field, to--
(i) the Secretary of Health and Human Services;
(ii) the President;
(iii) the Committee on Health, Education, Labor, and
Pensions, the Committee on Foreign Relations, and the Select
Committee on Intelligence of the Senate; and
(iv) the Committee on Energy and Commerce, the Committee on
Foreign Affairs, and the Permanent Select Committee on
Intelligence of the House of Representatives.
(B) Guidance.--The guidance provided under subparagraph (A)
shall include non-binding guidance for entities that utilize
genomic technologies, such as whole genomic sequencing, for
use in research or other types of individually identifiable
health information.
(3) Requirements.--In carrying out the duties of this
subsection, the Working Group shall consider all existing
Federal guidance and grant requirements (as of the date of
consideration), particularly with regard to foreign
influences and research integrity, and ensure that all
recommended updates to the Genomic Data Sharing Policy and
subsequent best practices put forward by the working group
not duplicate or conflict with existing guidance, as of the
date of publication.
(d) Powers of Working Group.--
(1) Hearings.--The Working Group may hold such hearings,
sit and act at such times and places, take such testimony,
and receive such evidence as the Working Group considers
advisable to carry out this Act.
(2) Information from federal agencies.--
(A) In general.--The Working Group may secure directly from
a Federal department or agency such information as the
Working Group considers necessary to carry out this Act.
(B) Furnishing information.--On request of a majority of
the members of the Working Group, the head of the department
or agency shall furnish the information to the Working Group.
(3) Postal services.--The Working Group may use the United
States mails in the same manner and under the same conditions
as other departments and agencies of the Federal Government.
(e) Termination of Working Group.--The Working Group shall
terminate 90 days after the date on which the Working Group
submits the report required under subsection (c)(2).
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