[Congressional Record Volume 152, Number 48 (Thursday, April 27, 2006)]
[Senate]
[Pages S3706-S3710]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DODD (for himself and Mr. DeWine):
  S. 2663. A bill to amend the Public Health Service Act to establish 
grant programs to provide for education and outreach on newborn 
screening and coordinated followup care once newborn screening has been 
conducted, to reauthorize programs under part A of title XI of such 
Act, and for other purposes; to the Committee on Health, Education, 
Labor, and Pensions.

  Mr. DODD. Mr. President, I am pleased today to join with my colleague 
Senator DeWine to introduce legislation to protect the most vulnerable 
members of our society: newborn infants. Many people know the joy of 
parenthood. They also know the sense of worry about whether their kids 
are doing well, are feeling well, and are safe. Nothing is of greater 
importance than the health and well-being of our children.
  Thanks to incredible advances in medical technology, it is now 
possible to test newborns for more than 50 genetic and metabolic 
disorders. Many of these disorders, if undetected, would lead to severe 
disability or death. However, babies that are properly diagnosed and 
treated can, in many cases, go on to live healthy lives. So newborn 
screening can literally save lives.
  Frighteningly, the disorders that newborn screening tests for can 
come without warning. For most of these disorders, there is no medical 
history of the condition in the family, no way to predict the health of 
a baby based on the health of the parents. Although the disorders that 
are tested for are quite rare, there is a chance that any one newborn 
will be effected a sort of morbid lottery. In that sense, this is an 
issue that has a direct impact on the lives of every family.
  Fortunately, some screening has become common practice in every 
State. Each year, over four million infants have blood taken from their 
heel to detect these disorders that could threaten their life and long-
term health. As a result, about one in 4,000 babies is diagnosed with 
one of these disorders. That means that newborn screening could protect 
the health or save the life of approximately 1,000 newborns each year. 
That is 1,000 tragedies that can be averted families that can know the 
joy of a new infant rather than absolute heartbreak.
  That is the good news. However, there is so much more to be done. For 
every baby saved, another two are estimated to be born with potentially 
detectable disorders that go undetected

[[Page S3707]]

because they are not screened. These infants and their families face 
the prospect of disability or death from a preventable disorder. The 
survival of a newborn may very well come down to the State in which it 
is born, because not all States test for every detectable disorder.
  The Government Accountability Office (GAO) released a report in 2003 
highlighting the need for this legislation. According to the report, 
most States do not educate parents and health care providers about the 
availability of tests beyond what is mandated by a state. States also 
reported that they do not have the resources to purchase the technology 
and train the staff needed to expand newborn screening programs. 
Finally, even when States do detect an abnormal screening result, the 
majority do not inform parents directly.
  Two weeks ago, I visited Stamford Hospital in my home State of 
Connecticut to talk to physicians and parents about newborn screening. 
I was joined there by Pamela Sweeney. Pamela is the mother of 7-year-
old Jonathan Sweeney. At the time of his birth, Connecticut only tested 
for eight disorders. He was considered a healthy baby, although he was 
a poor sleeper and needed to be fed quite frequently. One morning in 
December of 2000, Pamela found Jonathan with his eyes wide open but 
completely unresponsive. He was not breathing and appeared to be having 
a seizure. Jonathan was rushed to the hospital where, fortunately, his 
life was saved. He was later diagnosed with L-CHAD, a disorder that 
prevents Jonathan's body from turning fat into energy.
  Despite this harrowing tale, Jonathan and his family are extremely 
fortunate. Jonathan is alive, and his disorder can be treated with a 
special diet. He has experienced developmental delays that most likely 
could have been avoided had he been tested for L-CHAD at birth. This 
raises a question. Why was he not tested? Why do many States still not 
test for L-CHAD?
  The primary reason for this unfortunate reality is the lack of a 
consensus on the federal level about what should be screened for, and 
how a screening program should be developed. Fortunately, that is 
changing. In the Children's Health Act of 2000, Senator DeWine and I 
authored language to create an Advisory Committee on newborn screening 
within the Department of Health and Human Services. Last year, that 
Advisory Committee released a report recommending that all States test 
for a standard set of 29 disorders. Several States, including 
Connecticut, are already well on their way to meeting this 
recommendation.
  The legislation that we are introducing today will give states an 
additional helping hand towards meeting the Advisory's Committee's 
recommendation by providing $25 million for States to expand and 
improve their newborn screening programs. In order to access these 
resources, States will be required to commit to screening for all 29 
disorders.
  Our legislation will also provide $15 million for two types of 
grants. The first seeks to address the lack of information available to 
health care professionals and parents about newborn screening. Every 
parent should have the knowledge necessary to protect their child. The 
tragedy of a newborn's death is only compounded by the frustration of 
learning that the death was preventable. This bill authorizes grants to 
provide education and training to health care professionals, state 
laboratory personnel, families and consumer advocates.
  The second type of grant will support States in providing follow-up 
care for those children diagnosed by a disorder detected through 
newborn screening. While these families are the fortunate ones, in many 
cases they are still faced with the prospect of extended and complex 
treatment or major lifestyle changes. We need to remember that care 
does not stop at diagnosis.
  Finally, the bill directs the Centers for Disease Control and 
Prevention (CDC) to establish a national surveillance program for 
newborn screening, and provides $15 million for that purpose. Such a 
program will help us conduct research to better understand these rare 
disorders, and will hopefully lead us towards more effective treatments 
and cures.
  I urge my colleagues to support this important initiative so that 
every newborn child will have the best possible opportunity that 
America can offer to live a long, healthy and happy life.
  I ask unanimous consent that the text of the bill be printed in the 
Record.
  Mr. BURNS. Mr. President, I come to the floor today to introduce the 
Aviation Fuel Tax Simplification Act. This bill would suspend the new 
tax system on aviation grade kerosene until we have time to adequately 
address and study the impacts of such a proposal on aviation small 
businesses and the Airport and Airway Trust Fund.
  This bill addresses a problem created in the Highway Bill this body 
passed last year. That bill contained a change in the collection of 
fuel taxes for business and general aviation operators.
  Prior to the Highway bill passing, jet fuel intended for 
noncommercial use was taxed at 21.9 cents per gallon. Under the new 
provision, all taxes on aviation jet fuel are collected at the diesel 
fuel rate, which is 24.4 cents per gallon. After collection at the 
higher rate, the operator or ultimate vendor then has to file a claim 
with the Internal Revenue Service, IRS, to be reimbursed for the 2.5 
cent per gallon difference. Once, and only if, the vendor files the 
claim do the tax revenues then get transferred to the Airport and 
Airway Trust Fund.
  For general aviation, most of the entities that would be the ultimate 
vendors are the Fixed Based Operators, FBOs, located at the 19,200 
airports, heliports and seaplane bases throughout the U.S. Most of 
these FBOs are very small mom and pop businesses, and they do not have 
the resources to comply with the IRS's ultimate vendor rules.
  The Highway bill provision took effect last October, with little 
guidance from the IRS on how aviation fuel operators should apply the 
new policy. This lack of guidance has created an onerous and convoluted 
process for taxing aviation jet fuel. It also presents an enormous 
administrative challenge for aviation businesses, the overwhelming 
majority of which have never been engaged in any sort of wrongdoing.
  This provision was put in the Highway bill with the best of 
intentions in an effort to fight fuel fraud. However, I believe that 
provision has fallen into the category covered by the rule of 
unintended consequences. Unfortunately, the reality is the impact on 
small aviation businesses far outweighs the intent.
  In theory, the provision was put into place to address fuel fraud 
allegations directed at truck drivers filling up with jet fuel to avoid 
the 24.4 highway/diesel fuel tax. In reality, jet fuel is considerably 
more expensive than diesel fuel. It makes no sense to me that a truck 
driver would pay at least $1 per gallon more to save 25 cents per 
gallon in taxes.
  I have heard from many Montana providers on this issue and I think I 
can safely say, while the intent was noble, the impact is far too 
burdensome. Because of the burden and the possible impact on the 
Airport and Airway Trust Fund I feel it necessary to immediately 
suspend the new tax system. I look forward to working with my 
colleagues to find a more appropriate way of curbing fuel fraud.
  Mr. DeWINE. Mr. President, I rise today to join my colleague Senator 
Dodd in introducing the Newborn Screening Saves Lives Act of 2006.
  This important legislation would help States expand and improve their 
newborn screening programs, educate parents and health care providers 
about newborn screening, and improve follow-up care for infants with an 
illness detected through screening.
  Newborn screening is a public health activity used for early 
identification of infants affected by certain genetic, metabolic, 
hormonal and functional conditions for which there may be an effective 
treatment or intervention. If left untreated, these conditions can 
cause death, disability, mental retardation, and other serious health 
problems. Every year, over 4 million infants are born and screened to 
detect such conditions, with an estimated 3,000 babies identified in 
time for treatment. However, the number and quality of newborn 
screening tests performed varies dramatically from State to State. The 
Newborn Screening Saves Lives Act of 2006 aims to remedy these problems 
and improve newborn screening for all of America's newborns.

[[Page S3708]]

  This legislation is important because it provides resources to States 
to expand and improve their newborn screening programs and encourage 
States to test for the full roster of disorders recommended by the 
Advisory Committee on Heritable Disorders in Newborns and Children. It 
is imperative that we test for the full roster of disorders. That is 
why we are introducing this legislation to provide adequate funds to 
get this program started. It authorizes $65 million in fiscal year 07 
and such sums as may be necessary for fiscal year 08 through fiscal 
year 11 for grants to educate health care professionals, laboratory 
personnel, and parents about newborn screening and relevant new 
technologies.
  I encourage my colleagues to join Senator Dodd and me in co-
sponsoring this important bill.
  There being no objection, the text of the bill was ordered to be 
printed in the Record, as follows:

                                S. 2663

       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 ``Newborn Screening Saves 
     Lives Act of 2006''.

     SEC. 2. FINDINGS.

       Congress finds the following:
       (1) Currently, it is possible to test for more than 30 
     disorders through newborn screening.
       (2) There is a lack of uniform newborn screening throughout 
     the United States. While a newborn with a debilitating 
     condition may receive screening, early detection, and 
     treatment in 1 location, in another location the condition 
     may go undetected and result in catastrophic consequences.
       (3) Each year more than 4,000,000 babies are screened by 
     State and private laboratories to detect conditions that may 
     threaten their long-term health.
       (4) There are more than 2,000 babies born every year in the 
     United States with detectable and treatable disorders that go 
     unscreened through newborn screening.

     SEC. 3. AMENDMENT TO TITLE III OF THE PUBLIC HEALTH SERVICE 
                   ACT.

       Part Q of title III of the Public Health Service Act (42 
     U.S.C. 280h et seq.) is amended by adding at the end the 
     following:

     ``SEC. 399AA. NEWBORN SCREENING.

       ``(a) Authorization of Grant Programs.--
       ``(1) Grants to assist health care professionals.--From 
     funds appropriated under subsection (h), the Secretary, 
     acting through the Associate Administrator of the Maternal 
     and Child Health Bureau of the Health Resources and Services 
     Administration (referred to in this section as the `Associate 
     Administrator') and in consultation with the Advisory 
     Committee on Heritable Disorders in Newborns and Children 
     (referred to in this section as the `Advisory Committee'), 
     shall award grants to eligible entities to enable such 
     entities to assist in providing health care professionals and 
     newborn screening laboratory personnel with--
       ``(A) education in newborn screening; and
       ``(B) training in--
       ``(i) relevant and new technologies in newborn screening; 
     and
       ``(ii) congenital, genetic, and metabolic disorders.
       ``(2) Grants to assist families.--
       ``(A) In general.--From funds appropriated under subsection 
     (h), the Secretary, acting through the Associate 
     Administrator and in consultation with the Advisory 
     Committee, shall award grants to eligible entities to enable 
     such entities to develop and deliver educational programs 
     about newborn screening to parents, families, and patient 
     advocacy and support groups. The educational materials 
     accompanying such educational programs shall be provided at 
     appropriate literacy levels.
       ``(B) Awareness of the availability of programs.--To the 
     extent practicable, the Secretary shall make relevant health 
     care providers aware of the availability of the educational 
     programs supported pursuant to subparagraph (A).
       ``(3) Grants for quality newborn screening followup.--From 
     funds appropriated under subsection (h), the Secretary, 
     acting through the Associate Administrator and in 
     consultation with the Advisory Committee, shall award grants 
     to eligible entities to enable such entities to establish, 
     maintain, and operate a system to assess and coordinate 
     treatment relating to congenital, genetic, and metabolic 
     disorders.
       ``(b) Application.--An eligible entity that desires to 
     receive a grant under this section shall submit an 
     application to the Secretary at such time, in such manner, 
     and accompanied by such information as the Secretary may 
     require.
       ``(c) Selection of Grant Recipients.--
       ``(1) In general.--Not later than 120 days after receiving 
     an application under subsection (b), the Secretary, after 
     considering the approval factors under paragraph (2), shall 
     determine whether to award the eligible entity a grant under 
     this section.
       ``(2) Approval factors.--
       ``(A) Requirements for approval.--An application submitted 
     under subsection (b) may not be approved by the Secretary 
     unless the application contains assurances that the eligible 
     entity--
       ``(i) will use grant funds only for the purposes specified 
     in the approved application and in accordance with the 
     requirements of this section; and
       ``(ii) will establish such fiscal control and fund 
     accounting procedures as may be necessary to assure proper 
     disbursement and accounting of Federal funds paid to the 
     eligible entity under the grant.
       ``(B) Existing programs.--Prior to awarding a grant under 
     this section, the Secretary shall--
       ``(i) conduct an assessment of existing educational 
     resources and training programs and coordinated systems of 
     followup care with respect to newborn screening; and
       ``(ii) take all necessary steps to minimize the duplication 
     of the resources and programs described in clause (i).
       ``(d) Coordination.--The Secretary shall take all necessary 
     steps to coordinate programs funded with grants received 
     under this section.
       ``(e) Use of Grant Funds.--
       ``(1) Grants to assist health care professionals.--An 
     eligible entity that receives a grant under subsection (a)(1) 
     may use the grant funds to work with appropriate medical 
     schools, nursing schools, schools of public health, schools 
     of genetic counseling, internal education programs in State 
     agencies, nongovernmental organizations, and professional 
     organizations and societies to develop and deliver education 
     and training programs that include--
       ``(A) continuing medical education programs for health care 
     professionals and newborn screening laboratory personnel in 
     newborn screening;
       ``(B) education, technical assistance, and training on new 
     discoveries in newborn screening and the use of any related 
     technology;
       ``(C) models to evaluate the prevalence of, and assess and 
     communicate the risks of, congenital conditions, including 
     the prevalence and risk of some of these conditions based on 
     family history;
       ``(D) models to communicate effectively with parents and 
     families about--
       ``(i) the process and benefits of newborn screening;
       ``(ii) how to use information gathered from newborn 
     screening;
       ``(iii) the meaning of screening results, including the 
     possibility of false positive findings;
       ``(iv) the right of refusal of newborn screening, if 
     applicable; and
       ``(v) the potential need for followup care after newborns 
     are screened;
       ``(E) information and resources on coordinated systems of 
     followup care after newborns are screened;
       ``(F) information on the disorders for which States require 
     and offer newborn screening and options for newborn screening 
     relating to conditions in addition to such disorders;
       ``(G) information on additional newborn screening that may 
     not be required by the State, but that may be available from 
     other sources; and
       ``(H) other items to carry out the purpose described in 
     subsection (a)(1) as determined appropriate by the Secretary.
       ``(2) Grants to assist families.--An eligible entity that 
     receives a grant under subsection (a)(2) may use the grant 
     funds to develop and deliver to parents, families, and 
     patient advocacy and support groups, educational programs 
     about newborn screening that include information on--
       ``(A) what newborn screening is;
       ``(B) how newborn screening is performed;
       ``(C) who performs newborn screening;
       ``(D) where newborn screening is performed;
       ``(E) the disorders for which the State requires newborns 
     to be screened;
       ``(F) different options for newborn screening for disorders 
     other than those included by the State in the mandated 
     newborn screening program;
       ``(G) the meaning of various screening results, including 
     the possibility of false positive and false negative 
     findings;
       ``(H) the prevalence and risk of newborn disorders, 
     including the increased risk of disorders that may stem from 
     family history;
       ``(I) coordinated systems of followup care after newborns 
     are screened; and
       ``(J) other items to carry out the purpose described in 
     subsection (a)(2) as determined appropriate by the Secretary.
       ``(3) Grants for quality newborn screening followup.--An 
     eligible entity that receives a grant under subsection (a)(3) 
     shall use the grant funds to--
       ``(A) expand on existing procedures and systems, where 
     appropriate and available, for the timely reporting of 
     newborn screening results to individuals, families, primary 
     care physicians, and subspecialists in congenital, genetic, 
     and metabolic disorders;
       ``(B) coordinate ongoing followup treatment with 
     individuals, families, primary care physicians, and 
     subspecialists in congenital, genetic, and metabolic 
     disorders after a newborn receives an indication of the 
     presence or increased risk of a disorder on a screening test;
       ``(C) ensure the seamless integration of confirmatory 
     testing, tertiary care medical services, comprehensive 
     genetic services including genetic counseling, and 
     information about access to developing therapies by 
     participation in approved clinical trials involving the 
     primary health care of the infant;
       ``(D) analyze data, if appropriate and available, collected 
     from newborn screenings to

[[Page S3709]]

     identify populations at risk for disorders affecting 
     newborns, examine and respond to health concerns, recognize 
     and address relevant environmental, behavioral, 
     socioeconomic, demographic, and other relevant risk factors; 
     and
       ``(E) carry out such other activities as the Secretary may 
     determine necessary.
       ``(f) Reports to Congress.--
       ``(1) In general.--Subject to paragraph (2), the Secretary 
     shall submit to the appropriate committees of Congress 
     reports--
       ``(A) evaluating the effectiveness and the impact of the 
     grants awarded under this section--
       ``(i) in promoting newborn screening--

       ``(I) education and resources for families; and
       ``(II) education, resources, and training for health care 
     professionals;

       ``(ii) on the successful diagnosis and treatment of 
     congenital, genetic, and metabolic disorders; and
       ``(iii) on the continued development of coordinated systems 
     of followup care after newborns are screened;
       ``(B) describing and evaluating the effectiveness of the 
     activities carried out with grant funds received under this 
     section; and
       ``(C) that include recommendations for Federal actions to 
     support--
       ``(i) education and training in newborn screening; and
       ``(ii) followup care after newborns are screened.
       ``(2) Timing of reports.--The Secretary shall submit--
       ``(A) an interim report that includes the information 
     described in paragraph (1), not later than 30 months after 
     the date on which the first grant funds are awarded under 
     this section; and
       ``(B) a subsequent report that includes the information 
     described in paragraph (1), not later than 60 months after 
     the date on which the first grant funds are awarded under 
     this section.
       ``(g) Definition of Eligible Entity.--In this section, the 
     term `eligible entity' means--
       ``(1) a State or a political subdivision of a State;
       ``(2) a consortium of 2 or more States or political 
     subdivisions of States;
       ``(3) a territory;
       ``(4) an Indian tribe or a hospital or outpatient health 
     care facility of the Indian Health Service; or
       ``(5) a nongovernmental organization with appropriate 
     expertise in newborn screening, as determined by the 
     Secretary.
       ``(h) Authorization of Appropriations.--There are 
     authorized to be appropriated to carry out this section--
       ``(1) $15,000,000 for fiscal year 2007; and
       ``(2) such sums as may be necessary for each of fiscal 
     years 2008 through 2011.''.

     SEC. 4. IMPROVED NEWBORN AND CHILD SCREENING FOR HERITABLE 
                   DISORDERS.

       Section 1109 of the Public Health Service Act (42 U.S.C. 
     300b-8) is amended--
       (1) in subsection (c)(2)--
       (A) in subparagraph (E), by striking ``and'' after the 
     semicolon;
       (B) by redesignating subparagraph (F) as subparagraph (G); 
     and
       (C) by inserting after subparagraph (E) the following:
       ``(F) an assurance that the entity has adopted and 
     implemented, is in the process of adopting and implementing, 
     or will use grant amounts received under this section to 
     adopt and implement the guidelines and recommendations of the 
     Advisory Committee on Heritable Disorders in Newborns and 
     Children established under section 1111 (referred to in this 
     section as the `Advisory Committee') that are adopted by the 
     Secretary and in effect at the time the grant is awarded or 
     renewed under this section, which shall include the screening 
     of each newborn for the heritable disorders recommended by 
     the Advisory Committee and adopted by the Secretary and the 
     reporting of results; and''; and
       (2) in subsection (i), by striking ``such sums'' and all 
     that follows through the period at the end and inserting 
     ``$25,000,000 for fiscal year 2007 and such sums as may be 
     necessary for each of the fiscal years 2008 through 2011.''.

     SEC. 5. EVALUATING THE EFFECTIVENESS OF NEWBORN- AND CHILD-
                   SCREENING PROGRAMS.

       Section 1110 of the Public Health Service Act (42 U.S.C. 
     300b-9) is amended by adding at the end the following:
       ``(d) Authorization of Appropriations.--There are 
     authorized to be appropriated to carry out this section 
     $5,000,000 for fiscal year 2007 and such sums as may be 
     necessary for each of the fiscal years 2008 through 2011.''.

     SEC. 6. ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS 
                   AND CHILDREN.

       Section 1111 of the Public Health Service Act (42 U.S.C. 
     300b-10) is amended--
       (1) in subsection (b)--
       (A) by redesignating paragraph (3) as paragraph (5);
       (B) in paragraph (2), by striking ``and'' after the 
     semicolon;
       (C) by inserting after paragraph (2) the following:
       ``(3) recommend a uniform screening panel for newborn 
     screening programs that includes the heritable disorders for 
     which all newborns should be screened, including secondary 
     conditions that may be identified as a result of the 
     laboratory methods used for screening;
       ``(4) develop a model decision-matrix for newborn screening 
     program expansion, and periodically update the recommended 
     uniform screening panel described in paragraph (3) based on 
     such decision-matrix; and''; and
       (D) in paragraph (5) (as redesignated by subparagraph (A)), 
     by striking the period at the end and inserting ``, including 
     recommendations, advice, or information dealing with--
       ``(A) followup activities, including those necessary to 
     achieve rapid diagnosis in the short term, and those that 
     ascertain long-term case management outcomes and appropriate 
     access to related services;
       ``(B) diagnostic and other technology used in screening;
       ``(C) the availability and reporting of testing for 
     conditions for which there is no existing treatment;
       ``(D) minimum standards and related policies and procedures 
     for State newborn screening programs;
       ``(E) quality assurance, oversight, and evaluation of State 
     newborn screening programs;
       ``(F) data collection for assessment of newborn screening 
     programs;
       ``(G) public and provider awareness and education;
       ``(H) language and terminology used by State newborn 
     screening programs;
       ``(I) confirmatory testing and verification of positive 
     results; and
       ``(J) harmonization of laboratory definitions for results 
     that are within the expected range and results that are 
     outside of the expected range.''; and
       (2) by adding at the end the following:
       ``(d) Decision on Recommendations.--
       ``(1) In general.--Not later than 180 days after the 
     Advisory Committee issues a recommendation pursuant to this 
     section, the Secretary shall adopt or reject such 
     recommendation.
       ``(2) Pending recommendations.--The Secretary shall adopt 
     or reject any recommendation issued by the Advisory Committee 
     that is pending on the date of enactment of the Newborn 
     Screening Saves Lives Act of 2006 by not later than 180 days 
     after the date of enactment of such Act.
       ``(3) Determinations to be made public.--The Secretary 
     shall publicize any determination on adopting or rejecting a 
     recommendation of the Advisory Committee pursuant to this 
     subsection, including the justification for the 
     determination.
       ``(e) Continuation of Operation of Committee.--
     Notwithstanding section 14 of the Federal Advisory Committee 
     Act (5 U.S.C. App.), the Advisory Committee shall continue to 
     operate during the 5-year period beginning on the date of 
     enactment of the Newborn Screening Saves Lives Act of 
     2006.''.

     SEC. 7. LABORATORY QUALITY AND SURVEILLANCE.

       Part A of title XI of the Public Health Service Act (42 
     U.S.C. 300b-1 et seq.) is amended by adding at the end the 
     following:

     ``SEC. 1112. LABORATORY QUALITY.

       ``(a) In General.--The Secretary, acting through the 
     Director of the Centers for Disease Control and Prevention 
     and in consultation with the Advisory Committee on Heritable 
     Disorders in Newborns and Children established under section 
     1111, shall provide for--
       ``(1) quality assurance for laboratories involved in 
     screening newborns and children for heritable disorders, 
     including quality assurance for newborn-screening tests, 
     performance evaluation services, and technical assistance and 
     technology transfer to newborn screening laboratories to 
     ensure analytic validity and utility of screening tests; and
       ``(2) population-based pilot testing for new screening 
     tools for evaluating use on a mass scale.
       ``(b) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there are authorized to be 
     appropriated $5,000,000 for fiscal year 2007 and such sums as 
     may be necessary for each of the fiscal years 2008 through 
     2011.

     ``SEC. 1113. SURVEILLANCE PROGRAMS FOR HERITABLE DISORDERS 
                   SCREENING.

       ``(a) In General.--The Secretary, acting through the 
     Director of the Centers for Disease Control and Prevention, 
     shall carry out programs--
       ``(1) to collect, analyze, and make available data on the 
     heritable disorders recommended by the Advisory Committee on 
     Heritable Disorders in Newborns and Children established 
     under section 1111, including data on the causes of such 
     disorders and on the incidence and prevalence of such 
     disorders;
       ``(2) to operate regional centers for the conduct of 
     applied epidemiological research on the prevention of such 
     disorders;
       ``(3) to provide information and education to the public on 
     the prevention of such disorders; and
       ``(4) to conduct research on and to promote the prevention 
     of such disorders, and secondary health conditions among 
     individuals with such disorders.
       ``(b) Grants and Contracts.--
       ``(1) In general.--In carrying out subsection (a), the 
     Secretary may make grants to and enter into contracts with 
     public and nonprofit private entities.
       ``(2) Supplies and services in lieu of award funds.--
       ``(A) In general.--Upon the request of a recipient of an 
     award of a grant or contract under paragraph (1), the 
     Secretary may, subject to subparagraph (B), provide supplies,

[[Page S3710]]

     equipment, and services for the purpose of aiding the 
     recipient in carrying out the purposes for which the award is 
     made and, for such purposes, may detail to the recipient any 
     officer or employee of the Department of Health and Human 
     Services.
       ``(B) Reduction.--With respect to a request described in 
     subparagraph (A), the Secretary shall reduce the amount of 
     payments under the award involved by an amount equal to the 
     costs of detailing personnel and the fair market value of any 
     supplies, equipment, or services provided by the Secretary. 
     The Secretary shall, for the payment of expenses incurred in 
     complying with such request, expend the amounts withheld.
       ``(3) Application for award.--The Secretary may make an 
     award of a grant or contract under paragraph (1) only if an 
     application for the award is submitted to the Secretary and 
     the application is in such form, is made in such manner, and 
     contains such agreements, assurances, and information as the 
     Secretary determines to be necessary to carry out the 
     purposes for which the award is to be made.
       ``(c) Biennial Report.--Not later than February 1 of fiscal 
     year 2007 and of every second such year thereafter, the 
     Secretary shall submit to the Committee on Energy and 
     Commerce of the House of Representatives, and the Committee 
     on Health, Education, Labor, and Pensions of the Senate, a 
     report that, with respect to the preceding 2 fiscal years--
       ``(1) contains information regarding the incidence and 
     prevalence of heritable disorders and the health status of 
     individuals with such disorders and the extent to which such 
     disorders have contributed to the incidence and prevalence of 
     infant mortality and affected quality of life;
       ``(2) contains information under paragraph (1) that is 
     specific to various racial and ethnic groups (including 
     Hispanics, non-Hispanic whites, Blacks, Native Americans, and 
     Asian Americans);
       ``(3) contains an assessment of the extent to which various 
     approaches of preventing heritable disorders and secondary 
     health conditions among individuals with such disorders have 
     been effective;
       ``(4) describes the activities carried out under this 
     section;
       ``(5) contains information on the incidence and prevalence 
     of individuals living with heritable disorders, information 
     on the health status of individuals with such disorders, 
     information on any health disparities experienced by such 
     individuals, and recommendations for improving the health and 
     wellness and quality of life of such individuals;
       ``(6) contains a summary of recommendations from all 
     heritable disorders research conferences sponsored by the 
     Centers for Disease Control and Prevention; and
       ``(7) contains any recommendations of the Secretary 
     regarding this section.
       ``(d) Applicability of Privacy Laws.--The provisions of 
     this section shall be subject to the requirements of section 
     552a of title 5, United States Code. All Federal laws 
     relating to the privacy of information shall apply to the 
     data and information that is collected under this section.
       ``(e) Coordination.--
       ``(1) In general.--In carrying out this section, the 
     Secretary shall coordinate, to the extent practicable, 
     programs under this section with programs on birth defects 
     and developmental disabilities authorized under section 317C.
       ``(2) Priority in grants and contracts.--In making grants 
     and contracts under this section, the Secretary shall give 
     priority to entities that demonstrate the ability to 
     coordinate activities under a grant or contract made under 
     this section with existing birth defects surveillance 
     activities.
       ``(f) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there are authorized to be 
     appropriated $15,000,000 for fiscal year 2007 and such sums 
     as may be necessary for each of the fiscal years 2008 through 
     2011.''.
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