[Congressional Record Volume 167, Number 90 (Monday, May 24, 2021)]
[Senate]
[Pages S3369-S3370]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

  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,

[[Page S3370]]

     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).
                                 ______