I
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 de-
termined 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 Representa-
tives 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 Pub-
lic 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 Rev-
enue 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 or-
gans;
‘‘(2) does not require the consent or concur-
rence of any person before or after the individual’s
death; and
‘‘(3) may not be overridden by any other per-
son.
‘‘(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 ac-
cordance with subsection (e); or
‘‘(2) the election occurs on behalf of an indi-
vidual who is a dependent and becomes ineffective by
operation of section 6097(d)(1) of the Internal Rev-
enue Code of 1986.
‘‘(e) REVOCATION.—
‘‘(1) IN GENERAL.—The Secretary shall remove
from the registry the name and taxpayer identifica-
tion 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 ac-
cordance 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 re-
quested 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 sub-
section may not be construed as authorizing the Sec-
retary to disclose any information about an indi-
vidual 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 enti-
ty to collect or maintain evidence to be used, if an indi-
vidual is not listed in the registry, to determine the indi-
vidual’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 dis-
close 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 accord-
ance with criteria established by the Secretary. In estab-
lishing 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.—Sub-
chapter 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 REG-
ISTRY.
‘‘(a) IN GENERAL.—Except as provided in subsection
(b), in the case of an individual, with respect to each tax-
payer’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 tax-
payer 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 indi-
vidual is not incompetent and has not attained age
18 at the time of an election on behalf of the indi-
vidual, 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 consulta-
tion with the Secretary of Health and Human Serv-
ices, shall provide notice to the taxpayer described in
subsection (a) or the dependent described in sub-
section (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 inclu-
sion 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 offi-
cers 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 PUR-
POSES OF NATIONAL ORGAN DONOR REGISTRY.—Re-
turn 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 ORGANIZA-
TIONS.
Part H of title III of the Public Health Service Act
(42 U.S.C 273 et seq.) is amended by inserting after sec-
tion 377 the following:
‘‘SEC. 377A. GRANTS REGARDING HOSPITAL ORGAN DONA-
TION COORDINATORS.
‘‘(a) AUTHORITY.—The Secretary may award grants
to qualified organ procurement organizations described in
section 371 to establish programs coordinating organ do-
nation activities of such organizations and eligible hos-
pitals, for the purpose of increasing the rate of organ do-
nations for such hospitals.
‘‘(b) ELIGIBLE HOSPITAL.—For purposes of this sec-
tion, an eligible hospital is a hospital that performs signifi-
cant trauma care, or a hospital or consortium of hospitals
that serves a population base of at least 200,000 individ-
uals.
‘‘(c) PREFERENCE.—In awarding grants under sub-
section (a), the Secretary shall give preference to an appli-
cant 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 hos-
pital involved.
‘‘(d) ADMINISTRATION
OF
COORDINATION
PRO-
GRAM.—The Secretary may not make a grant under sub-
section (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 representa-
tives 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 pursu-
ant 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 in-
clude 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 DONA-
TION 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 do-
nation efforts and policies; and
‘‘(2) federally supported or conducted basic,
clinical, and health services research (including re-
search on preservation techniques and organ rejec-
tion and compatibility).
‘‘(b) COMPOSITION.—The task force shall be com-
posed of the following:
‘‘(1) The Surgeon General, who shall serve as
the chairperson.
‘‘(2) Members appointed by the Secretary to
represent—