[Congressional Bills 107th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5124 Introduced in House (IH)]







107th CONGRESS
  2d Session
                                H. R. 5124

 To provide for the establishment of a National Organ Donor Registry, 
                        and for other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             July 15, 2002

  Mr. Luther (for himself, Mr. Oberstar, Mr. Ramstad, Mr. Peterson of 
 Minnesota, and Ms. McCollum) introduced the following bill; which was 
 referred to the Committee on Energy and Commerce, and in addition to 
   the Committee on Ways and Means, for a period to be subsequently 
   determined by the Speaker, in each case for consideration of such 
 provisions as fall within the jurisdiction of the committee concerned

_______________________________________________________________________

                                 A BILL


 
 To provide for the establishment of a National Organ Donor Registry, 
                        and for other purposes.

    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 ``Darlene's Law''.

SEC. 2. NATIONAL ORGAN DONOR REGISTRY.

    (a) Establishment.--Part H of title III of the Public Health 
Service Act (42 U.S.C. 273 et seq.) is amended by inserting after 
section 373 the following:

                    ``national organ donor registry

    ``Sec. 373A. (a) Establishment.--The Secretary shall establish and 
maintain a registry to be known as the National Organ Donor Registry 
(in this section referred to as the `registry').
    ``(b) Contents.--The registry shall consist of each name and 
taxpayer identification number transferred to the Secretary under 
section 6097(e) of the Internal Revenue Code of 1986.
    ``(c) Effect.--Notwithstanding any Federal or State law or any 
contrary expression of intent, and subject to subsection (d), the 
election of an individual to be listed in the registry--
            ``(1) establishes the intent of the individual to make a 
        postmortem donation of the individual's organs;
            ``(2) does not require the consent or concurrence of any 
        person before or after the individual's death; and
            ``(3) may not be overridden by any other person.
    ``(d) Exceptions.--The election of an individual to be listed on 
the registry shall have no effect if--
            ``(1) the individual revokes the election in accordance 
        with subsection (e); or
            ``(2) the election occurs on behalf of an individual who is 
        a dependent and becomes ineffective by operation of section 
        6097(d)(1) of the Internal Revenue Code of 1986.
    ``(e) Revocation.--
            ``(1) In general.--The Secretary shall remove from the 
        registry the name and taxpayer identification number of any 
        individual, if so requested by the individual in the form and 
        manner prescribed by the Secretary.
            ``(2) Sole manner.--The only manner in which an individual 
        may revoke an election to be listed in the registry is by 
        making a request in accordance with this subsection.
    ``(f) Disclosure.--
            ``(1) In general.--The Secretary--
                    ``(A) may disclose to appropriate medical personnel 
                (including by electronic means) whether an individual 
                is listed in the registry, if so requested by such 
                personnel; and
                    ``(B) shall disclose to an individual whether such 
                individual is listed in the registry, if so requested 
                by the individual.
            ``(2) Requests.--Any request for a disclosure under this 
        subsection shall be submitted in such form and manner and 
        containing such information as the Secretary may require.
            ``(3) Rule of construction.--This subsection may not be 
        construed as authorizing the Secretary to disclose any 
        information about an individual other than whether the 
        individual is listed in the registry.
    ``(g) Presumption of Intent.--The listing of an individual in the 
registry shall give rise to a presumption that the individual has 
elected to be so listed.
    ``(h) State activities.--Nothing in this section shall preclude or 
deny the right of any State or other entity to collect or maintain 
evidence to be used, if an individual is not listed in the registry, to 
determine the individual's intent regarding postmortem organ donation.
    ``(i) Information Integrity.--The Secretary shall implement 
safeguards--
            ``(1) to ensure the accuracy of the information in the 
        registry; and
            ``(2) to restrict access to such information to authorized 
        persons, and use of such information to authorized purposes.
    ``(j) Redisclosure.--The Secretary may not disclose any information 
under subsection (f)(1)(A) unless the medical personnel to whom the 
information is disclosed agrees to use or disclose such information 
only in accordance with criteria established by the Secretary. In 
establishing such criteria, the Secretary shall consider privacy 
interests and medical needs.''.

SEC. 3. CHECKOFF ON TAX RETURNS FOR NATIONAL ORGAN DONOR REGISTRY.

    (a) Opt-in Checkoff on Tax Returns.--Subchapter A of chapter 61 of 
the Internal Revenue Code of 1986 is amended by adding at the end the 
following new part:

         ``PART IX--CHECKOFF FOR NATIONAL ORGAN DONOR REGISTRY

                              ``Sec. 6097. Checkoff for national organ 
                                        donor registry.

``SEC. 6097. CHECKOFF FOR NATIONAL ORGAN DONOR REGISTRY.

    ``(a) In General.--Except as provided in subsection (b), in the 
case of an individual, with respect to each taxpayer's return for the 
taxable year of the tax imposed by chapter 1, such taxpayer may elect 
that the taxpayer, the spouse of the taxpayer, and each dependent of 
the taxpayer be listed on the National Organ Donor Registry.
    ``(b) Dependents.--In the case of a dependent who is not a 
qualified dependent, the Secretary shall provide an opportunity for 
such dependent or such dependent's parent or guardian to elect to have 
the dependent listed on the National Organ Donor Registry.
    ``(c) Definitions.--For purposes of this section:
            ``(1) The term `National Organ Donor Registry' means the 
        registry established by the Secretary of Health and Human 
        Services under section 373A of the Public Health Service Act.
            ``(2) The term `qualified dependent' means a dependent who, 
        as determined under applicable State law, is subject to the 
        control, authority, and supervision of the taxpayer because 
        such dependent has not attained age 18 or is incompetent.
    ``(d) Special Rules.--For purposes of this section--
            ``(1) Dependent's election.--If an individual is not 
        incompetent and has not attained age 18 at the time of an 
        election on behalf of the individual, such election shall not 
        be effective for any calendar year beginning after the year in 
        which such individual attains age 18.
            ``(2) Manner and time of designation.--An election under 
        subsection (a) may be made only at the time of filing a return 
        of the tax imposed by chapter 1 for a taxable year. Such 
        election shall be made in such manner as the Secretary 
        prescribes by regulations except that such election shall be 
        made either on the first page of the return or on the page 
        bearing the taxpayer's signature.
            ``(3) Notice.--The Secretary, after consultation with the 
        Secretary of Health and Human Services, shall provide notice to 
        the taxpayer described in subsection (a) or the dependent 
        described in subsection (b) of the effect of making the 
        election under this section. In the case of the taxpayer, such 
        notice may be provided in the instructions for preparing such 
        return.
    ``(e) Transfer of Information to National Organ Donor Registry.--
The Secretary shall transfer to the Secretary of Health and Human 
Services for inclusion in the National Organ Donor Registry the name 
and taxpayer identification number of each individual for whom an 
election is made under subsection (a) or (b).''.
    (b) Disclosure of Information to National Organ Donor Registry.--
Subsection (i) of section 6103 of such Code (relating to disclosure to 
Federal officers or employees for administration of Federal laws not 
relating to tax administration) is amended by adding at the end the 
following new paragraph:
            ``(8) Disclosure of name and tin for purposes of national 
        organ donor registry.--Return information described in section 
        6097(e) shall be disclosed to the National Organ Donor Registry 
        (as defined in section 6097(c)(1)) for inclusion on, and 
        disclosure by, such registry.''.
    (c) Clerical Amendment.--The table of parts for subchapter A of 
chapter 61 of such Code is amended by adding at the end thereof the 
following new item:

                              ``Part IX. Checkoff for national organ 
                                        donor registry.''.
    (d) Effective Date.--The amendments made by this section shall 
apply to taxable years beginning after December 31, 2001.

SEC. 4. GRANTS TO ORGAN PROCUREMENT ORGANIZATIONS.

    Part H of title III of the Public Health Service Act (42 U.S.C 273 
et seq.) is amended by inserting after section 377 the following:

``SEC. 377A. GRANTS REGARDING HOSPITAL ORGAN DONATION COORDINATORS.

    ``(a) Authority.--The Secretary may award grants to qualified organ 
procurement organizations described in section 371 to establish 
programs coordinating organ donation activities of such organizations 
and eligible hospitals, for the purpose of increasing the rate of organ 
donations for such hospitals.
    ``(b) Eligible Hospital.--For purposes of this section, an eligible 
hospital is a hospital that performs significant trauma care, or a 
hospital or consortium of hospitals that serves a population base of at 
least 200,000 individuals.
    ``(c) Preference.--In awarding grants under subsection (a), the 
Secretary shall give preference to an applicant if the Secretary 
determines that the probable result of awarding a grant to the 
applicant will be a significant increase in the rate of organ donation 
for the eligible hospital involved.
    ``(d) Administration of Coordination Program.--The Secretary may 
not make a grant under subsection (a) to a qualified organ procurement 
organization unless the organization agrees that the program to be 
funded under the grant will be carried out jointly--
            ``(1) by representatives of the organization and the 
        eligible hospital involved; and
            ``(2) by such other entities as the representatives 
        referred to in paragraph (1) may designate.
    ``(e) Evaluations.--Not later than 2 years after the first award of 
a grant under subsection (a), the Secretary  shall ensure an evaluation 
of programs carried out pursuant to this section to determine the 
extent to which the programs have increased the rate of organ donation 
for the eligible hospitals involved. Such evaluation shall include 
recommendations on whether the programs should be expanded to include 
other grantees, such as hospitals.''.

SEC. 5. INTER-AGENCY TASK FORCE ON ORGAN DONATION AND RESEARCH.

    Part H of title III of the Public Health Service Act (42 U.S.C. 273 
et seq.) is further amended by adding after section 377A (as added by 
section 4) the following:

``SEC. 377B. INTER-AGENCY TASK FORCE ON ORGAN DONATION AND RESEARCH.

    ``(a) In General.--The Secretary shall establish an inter-agency 
task force on organ donation and research (referred to in this section 
as the `task force') to improve the coordination and evaluation of--
            ``(1) federally supported or conducted organ donation 
        efforts and policies; and
            ``(2) federally supported or conducted basic, clinical, and 
        health services research (including research on preservation 
        techniques and organ rejection and compatibility).
    ``(b) Composition.--The task force shall be composed of the 
following:
            ``(1) The Surgeon General, who shall serve as the 
        chairperson.
            ``(2) Members appointed by the Secretary to represent--
                    ``(A) relevant agencies within the Department of 
                Health and Human Services (including the Health 
                Resources and Services Administration, the Centers for 
                Medicare & Medicaid Services, the National Institutes 
                of Health, and the Agency for Healthcare Research and 
                Quality); or
                    ``(B) such other Federal agencies and departments 
                as determined appropriate by the Secretary.
    ``(c) Reports.--The task force shall assist the Secretary to 
prepare the reports required under section 9 of Darlene's Law.
    ``(d) Termination.--The task force shall terminate at the end of 
fiscal year 2007. Upon such termination, the Secretary shall provide 
for the on-going coordination of federally supported or conducted organ 
donation and research activities.''.

SEC. 6. DEMONSTRATION PROJECTS, EDUCATION, AND PUBLIC AWARENESS.

    Part H of title III of the Public Health Service Act (42 U.S.C. 273 
et seq.) is further amended by adding after section 377B (as added by 
section 5) the following:

``SEC. 377C. DEMONSTRATION PROJECTS, EDUCATION, AND PUBLIC AWARENESS.

    ``(a) Grants To Increase Donation Rates.--The Secretary shall award 
peer-reviewed grants to public and non-profit private entities, 
including States, to carry out studies and demonstration projects to 
increase organ donation and recovery rates. Such projects may include 
projects to remove financial disincentives to organ donation and 
research on issues relating to presumed consent.
    ``(b) Organ Donation Public Awareness Program.--
            ``(1) Establishment.--The Secretary shall establish a 
        public education program in cooperation with existing national 
        public awareness campaigns to increase awareness about organ 
        donation and the need to provide for an adequate rate of such 
        donations.
            ``(2) Mobile units.--The program established under this 
        subsection may include the creation of one or more mobile units 
        to travel around the Nation promoting organ donation.
    ``(c) Development of Curricula and Other Education Activities.--
            ``(1) In general.--The Secretary, in coordination with the 
        Organ Procurement and Transplantation Network and other 
        appropriate organizations, shall support the development and 
        dissemination of model curricula to train health care 
        professionals and other appropriate professionals (including 
        religious leaders in the community, funeral directors, and law 
        enforcement officials) in issues relevant to organ donation, 
        including cultural sensitivities and methods to approach 
        patients and their families.
            ``(2) Health care professionals.--For purposes of paragraph 
        (1), the term `health care professionals' includes--
                    ``(A) medical students, residents, and fellows, 
                attending physicians, nurses, social workers, and other 
                allied health professionals; and
                    ``(B) hospital- or other health care facility-based 
                chaplains; and
                    ``(C) emergency medical personnel.''.

SEC. 7. STUDIES RELATING TO ORGAN AND TISSUE DONATION AND THE RECOVERY, 
              PRESERVATION, AND TRANSPORTATION OF ORGANS AND TISSUES.

    Part H of title III of the Public Health Service Act (42 U.S.C. 273 
et seq.) is further amended by adding after section 377C (as added by 
section 6) the following:

``SEC. 377D. STUDIES RELATING TO ORGAN AND TISSUE DONATION AND THE 
              RECOVERY, PRESERVATION, AND TRANSPORTATION OF ORGANS AND 
              TISSUES.

    ``(a) Development of Supportive Information.--The Secretary, acting 
through the Administrator of the Health Resources and Services 
Administration and the Director of the Agency for Healthcare Research 
and Quality, shall develop scientific evidence in support of efforts to 
increase organ and tissue donation and improve the recovery, 
preservation, and transportation of organs and tissues.
    ``(b) Activities.--In carrying out subsection (a), the Secretary 
shall--
            ``(1) conduct or support evaluation research to determine 
        whether interventions, technologies, or other activities 
        improve the effectiveness, efficiency, or quality of existing 
        organ and tissue donation practice;
            ``(2) undertake or support periodic reviews of the 
        scientific literature to assist efforts of professional 
        societies to ensure that the clinical practice guidelines that 
        they develop reflect the latest scientific findings;
            ``(3) ensure that scientific evidence of the research and 
        other activities undertaken under this section is readily 
        accessible by the organ procurement workforce; and
            ``(4) work in coordination with the appropriate 
        professional societies as well as the Organ Procurement and 
        Transplantation Network and other organ procurement and 
        transplantation organizations to develop evidence and promote 
        the adoption of such proven practices.
    ``(c) Research, Demonstrations, and Training.--The Secretary, 
acting through the Administrator of the Health Resources and Services 
Administration and the Director of the Agency for Healthcare Research 
and Quality, as appropriate, shall provide support for research, 
demonstrations, and training, as appropriate--
            ``(1) to develop a uniform clinical vocabulary for organ 
        recovery;
            ``(2) to apply information technology and 
        telecommunications to support the clinical operations of organ 
        procurement organizations;
            ``(3) to enhance the skill levels of the organ procurement 
        workforce in undertaking quality improvement activities; and
            ``(4) to assess specific organ recovery, preservation, and 
        transportation technologies.''.

SEC. 8. AUTHORIZATION OF APPROPRIATIONS.

    Section 378 of the Public Health Service Act (42 U.S.C. 274g) is 
amended--
            (1) by striking ``For the purpose'' and inserting ``(a) In 
        General.--For the purpose''; and
            (2) by adding at the end the following:
    ``(b) Grants to Organ Procurement Organizations.--For the purpose 
of carrying out section 377A, there are authorized to be appropriated 
(in addition to amounts authorized to be appropriated under subsection 
(a)) $3,000,000 for fiscal year 2003, and such sums as may be necessary 
for each of fiscal years 2004 through 2007.
    ``(c) Other Programs.--For the purpose of carrying out sections 
377B, 377C, and 377D, there are authorized to be appropriated (in 
addition to amounts authorized to be appropriated under subsection (a)) 
$10,000,000 for fiscal year 2003, and such sums as may be necessary for 
each of fiscal years 2004 through 2007.''.

SEC. 9. REPORTS.

    (a) In General.--The Secretary of Health and Human Services shall 
submit to the Congress--
            (1) not later than the end of 2004, an interim report; and
            (2) not later than the end of 2007, a final report.
    (b) Contents.--The reports required by this section shall each 
contain a detailed statement on the progress and efficacy of the 
activities carried out under the amendments made by this Act.
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