Title: Health Data De-identification Report Act
Policy area: Health

Summary:
Health Data De-identification Report Act
This bill requires the Office for Civil Rights within the Department of Health and Human Services to study the validity and effectiveness of current methods used to determine if health information is not individually identifiable for purposes of federal privacy rules that apply to health data.

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 4990 Introduced in Senate (IS)]

<DOC>






116th CONGRESS
  2d Session
                                S. 4990

To require the Office for Civil Rights of the Department of Health and 
    Human Services to conduct a study and issue a report on the de-
        identification of data pursuant to privacy regulations.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                            December 9, 2020

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

_______________________________________________________________________

                                 A BILL


 
To require the Office for Civil Rights of the Department of Health and 
    Human Services to conduct a study and issue a report on the de-
        identification of data pursuant to privacy regulations.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Health Data De-identification Report 
Act''.

SEC. 2. STUDY AND REPORT BY THE HHS OFFICE FOR CIVIL RIGHTS.

    (a) In General.--The Office for Civil Rights of the Department of 
Health and Human Services, in cooperation with the National Institute 
of Standards and Technology, shall conduct a study that considers and 
compares the effectiveness and validity of safe harbor and expert 
determination as methods of carrying out the de-identification of data 
required under section 164.514 of title 45, Code of Federal Regulations 
(as in effect on the date of enactment of this Act), and shall submit 
to Congress a report on such study not later than 270 days of the date 
of enactment of this Act.
    (b) Content of Study and Report.--The study and report under 
subsection (a) shall consider--
            (1) any known instances where data that was de-identified 
        as required under section 164.514 of title 45, Code of Federal 
        Regulations (as in effect on the date of enactment of this Act) 
        became re-identified, even partially, and, with respect to each 
        such instance, how such re-identification occurred and any harm 
        incurred by any individual whose data was re-identified;
            (2) the frequency by which each of the safe harbor method 
        and the expert determination method is used for the de-
        identification of data as described in subsection (a), and the 
        sizes of the data sets on which each such method is used;
            (3) the costs of each such method of de-identification, and 
        the relative utility of the data that is de-identified through 
        each such method;
            (4) which of the 2 methods of de-identification renders 
        data less likely to be easily re-identifiable;
            (5) whether either such method removes information that 
        would help address health care disparities, thereby making it 
        more difficult to address such disparities;
            (6) which of the 2 methods is most commonly used for 
        purposes of medical research, and the benefits and 
        disadvantages of using each such method for such purpose;
            (7) the risk of re-identification by each of the 2 methods, 
        especially when the resulting de-identified dataset will be 
        accessible by entities that have access to additional data;
            (8) whether or not there are use cases that cannot be 
        performed using data de-identified by either of the 2 methods; 
        and
            (9) the ease or difficulty of expert determination, taking 
        into consideration cost, accessibility, and qualifications of 
        experts.
                                 <all>