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Indicator: 3
[Outcome]
Measurements in/of Recommendations Partially Accepted
Relationships: Department of Health and Human Services - Narrower_Than
Other Information:
Secretary's Advisory Committee on Genetics, Health, and Society
| Type |
Target |
Actual |
| StartDate |
2010-10-01 |
2010-10-01 |
| EndDate |
2011-09-30 |
2011-09-30 |
| Percentage |
n/a |
22 |
| Description |
There are sometimes a few proposals which were not funded in their entirety, those few being scaled back from their original
level of requested funding (allowable under the program).
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Recommendations implemented: Recommendation from the 2008 SACGHS report U.S. System of Oversight of Genetic Testing: A Response
to the Charge of the Secretary of Health and Human Services that called for HHS to develop and maintain a mandatory registry
for laboratory tests. On March 18, 2010, the National Institutes of Health (NIH) announced that it plans to develop a voluntary
registry for genetic tests (http://www.nih.gov/news/health/mar2010/od-18.htm).Recommendation from the 2008 SACGHS report U.S.
System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and Human Services that called
for HHS to ensure the coordination and implementation of efforts to advance the appropriate use of interoperable patient-level
data for research and enhance the quality of decisionmaking. The criteria for the meaningful use of electronic health records
(EHRs)—developed by the Office of the National Coordinator for Health Information Technology and the Centers for Medicare
& Medicaid Services—support the use of EHRs to advance research (http://edocket.access.gpo.gov/2010/E9-31216.htm).Recommendation
from the 2008 SACGHS report U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health
and Human Services that called for resources to translate genetic and genomic research into evidence-based clinical practice
guidelines that enhance the quality of clinical health care and public health care outcomes. The Centers for Disease Control
and Prevention has initiated the Genomic Applications in Practice and Prevention Network (GAPPNet™) to accelerate and streamline
the effective and responsible use of validated and useful genomic knowledge and applications, such as genetic tests, technologies,
and family history, into clinical and public health practice (http://www.cdc.gov/genomics/translation/GAPPNet/). Recommendation
from the 2007 SACGHS report Policy Issues Associated with Undertaking a New Large U.S. Population Cohort Study of Genes, Environment,
and Disease that called for the HHS Secretary to assess the public’s willingness to participate in a large population cohort
study in advance of any funding decision. NIH funded studies to assess public opinions and expectations of a large genetic
cohort study. Two papers were published reporting results of these studies: Kaufman D, Murphy J, Scott J, Hudson K. Subjects
matter: a survey of public opinions about a large genetic cohort study. Genetics in Medicine. 2008 Nov;10(11):831-9.Murphy
J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K. Public expectations for return of results from large-cohort genetic research.
American Journal of Bioethics. 2008 Nov;8(11):36-43.
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