2018-26518. Solicitation of Nominations for Membership To Serve on the Advisory Committee on Heritable Disorders in Newborns and Children

AGENCY:

Health Resources and Services Administration (HRSA), Department of Health and Human Services (HHS).

ACTION:

Request for nominations.

SUMMARY:

HRSA is seeking nominations of qualified candidates to be considered for appointment as members of the Advisory Committee on Heritable Disorders in Newborns and Children (Committee). The Committee provides advice, recommendations, and technical information about aspects of heritable disorders and newborn and childhood screening to the Secretary of HHS (Secretary). HRSA is seeking nominations of qualified candidates to fill up to five positions on the Committee.

DATES:

Written nominations for membership on the Committee must be received on or before January 4, 2019.

ADDRESSES:

Nomination packages must be submitted electronically as email attachments to Andrea Matthews, Genetic Services Branch, Maternal and Child Health Bureau, HRSA, at [e-mail].

FOR FURTHER INFORMATION CONTACT:

Andrea Matthews, MCHB, HRSA 5600 Fishers Lane, Room 18-N-34D , Rockville, MD 20857; 301-945-3062; or [e-mail]. A copy of the Committee charter and list of the current membership may be obtained by accessing the Committee website at https://www.hrsa.gov/​advisory-committees/​heritable-disorders/​about/​index.html.

SUPPLEMENTARY INFORMATION:

The Committee was established in 2003 to advise the Secretary regarding newborn screening tests, technologies, policies, guidelines, and programs for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. In addition, the Committee provides advice and recommendations to the Secretary concerning the grants and projects authorized under section 1109 of the PHS Act and technical information to develop policies and priorities for grants, including those that will enhance the ability of the state and local health agencies to provide for newborn and child screening, counseling, and health care services for newborns and children having, or at risk for, heritable disorders. The Committee meets four times each calendar year, or at the discretion of the Designated Federal Officer in consultation with the Chair.

The Committee reviews and reports regularly on newborn and childhood screening practices for heritable disorders, recommends improvements in the national newborn and childhood heritable screening programs, and recommends conditions for inclusion in the Recommended Uniform Screening Panel (RUSP). The Committee's recommendations regarding additional conditions/inherited disorders for screening that have been adopted by the Secretary are included in the RUSP and constitute part of the comprehensive guidelines supported by HRSA pursuant to section 2713 of the PHS Act, codified at 42 U.S.C. 300gg-13. Under this provision, non-grandfathered health plans and group and individual health insurance issuers are required to cover screenings included in the HRSA-supported comprehensive guidelines without charging a co-payment, co-insurance, or deductible for plan years (i.e., in the individual market, policy years) beginning on or after the date that is 1 year from the Secretary's adoption of the condition for screening.

Nominations: HRSA is requesting nominations for voting members to serve on the Committee to fill one position in 2019 and up to four positions in 2020. The Secretary appoints Committee members with the expertise needed to fulfill the duties of the Advisory Committee. The membership requirements are set forth at 42 U.S.C. 300b-10(c)(2). Nominees sought are medical, technical, or scientific professionals with special expertise in the field of heritable disorders or in providing screening, counseling, testing, or specialty services for newborns and children with, or at risk for having, heritable disorders; individuals who have expertise in ethics (e.g., bioethics) and infectious diseases and who have worked and published material in the area of newborn screening; members of the public having special expertise about, or concern with, heritable disorders; and/or representatives from such federal agencies, public health constituencies, and medical professional societies. Interested applicants may self-nominate or be nominated by another individual or organization. Nominees must reside in the United States and cannot be funded for international travel.

Individuals selected for appointment to the Committee will be invited to serve for up to 4 years. Members who are not federal officers or permanent federal employees are appointed as special government employees and receive a stipend and reimbursement for per diem and travel expenses incurred for attending Committee meetings and/or conducting other business on behalf of the Committee, as authorized by 5 U.S.C. 5703 of the FACA for persons employed intermittently in government service. Members who are already officers or employees of the United States Government shall not receive additional compensation for service on the Committee, but receive per diem and travel expenses incurred for attending Committee meetings and/or conducting other business on behalf of the Committee.

The following information must be included in the package of materials submitted for each individual being nominated for consideration: (1) A statement that includes the name and affiliation of the nominee and a clear statement regarding the basis for the nomination, including the area(s) of expertise that may support eligibility of a nominee for service on the Committee, as described above; (2) confirmation the nominee is willing to serve as a member of the Committee; (3) the nominee's contact information (please include home address, work address, daytime telephone number, and an email address); and (4) a current copy of the nominee's curriculum vitae. Nomination packages may be submitted directly by the individual being nominated or by the person/organization recommending the candidate.

HHS will endeavor to ensure that the membership of the Committee is fairly balanced in terms of points of view represented and that individuals from a broad representation of geographic areas, gender, ethnic and minority groups, as well as individuals with disabilities, are considered for membership. Appointments shall be made without discrimination on the basis of age, ethnicity, gender, sexual orientation, and cultural, religious, or socioeconomic status.

Individuals who are selected to be considered for appointment will be required to provide detailed information regarding their financial holdings, consultancies, and research grants or contracts. Disclosure of this information is required in order for HRSA to determine if the selected candidate is involved in any activity that may pose a potential conflict with the official duties to be performed as a member of the Committee and to identify any required remedial action needed to address the potential conflict.

Authority: Section 1111 of the Public Health Service (PHS) Act, as amended by the Newborn Screening Saves Lives Reauthorization Act of 2014 (42 U.S.C. 300b-10). The Committee is governed by the Federal Advisory Committee Act (FACA), as amended (5 U.S.C. App.), and 41 CFR part 102-3, which set forth standards for the formation and use of advisory committees.

Amy McNulty,

Acting Director, Division of the Executive Secretariat.