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Announcement of a Cooperative Agreement for Assessing the Provision of Genetic Services and Factors Affecting the Supply and Demand for Genetic Services

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Start Preamble

The Health Resources and Services Administration (HRSA) announces its intention to award a sole-source Cooperative Agreement to the University of Maryland at Baltimore (UMB) to fund a national study that assesses the delivery of genetic services and the roles of geneticists and other health professionals in genetic service delivery. Specifically, this project will describe the current and emerging health care models for providing genetic services, the genetics specialist workforce, the role of primary care physicians and other clinicians in genetic services, and factors influencing the supply and demand for services across the country. This study will serve as a baseline for building longitudinal analyses of these issues.

The purpose of this Cooperative Agreement is to support a study that will provide: (1) Baseline information; (2) an understanding of the models for delivering genetic services; (3) the factors affecting the demand for genetic services; (4) and the health personnel involved with the delivery of genetic services. This information will be shared with policymakers, the genetics community, health care professionals and educators, and those involved with delivering or planning for genetic services.

UMB will manage this project in collaboration with four HRSA-funded university-based health workforce research centers (State University of New York at Albany; University of Illinois at Chicago (UIC); University of California at San Francisco (UCSF); and the University of Washington at Seattle).

Each of the four collaborating Centers will have faculty and staff participating on the research team. All four have been actively involved in specific projects and tasks which relate to their respective strengths and expertise, which allows this proposed project to draw upon their experience and on their established collaborative relationships. For example, the Suny/Albany Center is leading the survey of geneticists, and the UW Center is helping to lead the survey of primary clinicians.

Authorizing Legislation

This Cooperative Agreement will be awarded under the following authorities: (1) Section 485B of the Public Health Service (PHS) Act, which authorizes the National Center for Human Genome Research to plan and coordinate research goals of the genome project; (2) section 761 as amended of the PHS Act, which authorizes the collection of data and the analysis of workforce related issues; (3) and section 501(a)(2) of the Social Security Act, which authorizes special projects of regional and national significance with respect to maternal and child health and children with special health care needs.

The Federal role in the conduct of this Cooperative Agreement allows for substantial Federal programmatic involvement with planning, development, administration, and evaluation. The Federal role in this Cooperative Agreement will include the following:

(a) Participation in the planning and development of all phases of this project, including review and consultation regarding contracts and agreements developed during the implementation of project activities.

(b) Participation in the development of an evaluation plan for the project.

(c) Assistance in establishing priorities for each budget year that will be consistent with the overall mission of the Federal funding agencies and within the scope of work of the approved project.

(d) Participation in the annual program review and development of specific objectives for each subsequent year.

(e) Consultation on Federal and other organizational contacts necessary to carry out the program.

(f) Participation in the approval of study protocols and methodologies.

(g) Assistance in identifying Federal and other national organizations and coalitions with whom collaboration is essential in order to further the cooperative agreement (mission) and develop specific strategies to support the work of these related groups.

Availability of Funds

Approximately $500,000 is available to fund this sole-source Cooperative Agreement in FY 2001. HRSA's Bureau of Health Professions (BHPr) will be joined by HRSA's Maternal and Child Start Printed Page 48150Health Bureau (MCHB), and the National Human Genome Research Institute's (NHGRI) Ethical, Legal, and Social Implications (ELSI) Program in funding this national study of the delivery of genetics services and the roles of geneticists and other health professionals in service delivery. One-third of the funds will be provided by BHPr, MCHB, and the NHGRI/ELSI Program, respectively. The project period will be 3 years. Competing renewals of the project are not anticipated. UMB may request up to $500,000 per year in total costs (direct plus indirect costs) for up to 3 years. Funding for years after the first year will depend on satisfactory performance and the availability of appropriations.

UMB must share in the cost of the program as follows: for each year funds are awarded under this program, the matching contribution must be at least one-third of the amount of the Federal award for that year. Up to 50 percent of UMB's matching contribution may be in the form of in-kind contributions such as faculty time, staff time, use of computers and other shared resources.


Led by UMB, this collaborative project will provide baseline information and descriptions of the models for delivering genetics services, the factors affecting the demand for genetic services, and the health personnel involved with the delivery of such services. This information will be shared with policymakers, the genetics community, health care professionals and educators, and those involved with delivering or planning for genetics services.

The project's specific research aims are to:

1. Assess the current providers of genetics services through survey studies of genetic specialists and primary care clinicians, and develop a system to monitor changes in delivery of services, the demand for services, and profession practice over time;

2. Describe the current models for delivering genetics services and variations in providing the services within these models, and identify ways that various groups have met the demand for genetic services and potential best practice models;

3. Describe the ways genetic services are provided in a representative sample of communities across the country, identifying the factors that affect service delivery, such as local health care organization, the supply and roles of various health care personnel, referral patterns, providers for underserved groups, insurers and managed care plans, regulation, and competition;

4. Describe and assess the factors that influence demand for genetics services such as genetic testing volume, coverage and payment by health insurers and managed care plans, state and federal policies and regulations, public awareness and advocacy groups efforts;

5. Develop working relationships and efficient communications with key public and private organizations and stakeholders involved with planning for genetics services, and disseminate study findings to these and other relevant stakeholders.

Eligible Applicants

Single Source

Assistance will be provided only to the University of Maryland at Baltimore (UMB). No other applications are solicited. UMB is uniquely qualified to conduct this complex and comprehensive study of genetic services under this Cooperative Agreement because it has a unique set of resources and research capacity which include:

1. Comprehensive genetic clinical service and training programs;

2. Leadership in genetics organizations and advisory groups; and

3. Faculty expertise in health profession workforce studies.

UMB will conduct high-quality research and disseminate its findings to colleagues and policymakers at the institutional, Federal, and State levels. Also from its findings, UMB will produce reports that move the field forward, in the form of peer reviewed publications, web-based documents and other publications as well as presentations at national, regional or State forums.

Additional Information

Questions concerning programmatic aspects of the Cooperative Agreement may be directed to Herb Traxler, PhD, National Center for Health Workforce Information and Analysis, Bureau of Health Professions, HRSA, Room 8-55, Parklawn Building, 5600 Fishers Lane, Rockville, MD 20867; or e-mail address at Herb Traxler's telephone number is (301) 443-3148.

Start Signature

Dated: September 7, 2001.

Elizabeth M. Duke,

Acting Administrator.

End Signature End Preamble

[FR Doc. 01-23200 Filed 9-17-01; 8:45 am]