H.R. 5124 (107th): Darlene’s Law
HR 5124 IH
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
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
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.
‘(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.
‘(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.