genes, environment, and disease
http://www4.od.nih.gov/oba/SACGHS/reports/SACGHS_LPS_report.pdf
The report describes the preliminary questions that should be addressed to help policymakers decide whether the U.S. Government should undertake a new large population study (LPS) of genes, environment, and disease. The aim of such studies is to determine linkages between environmental factors and exposures and risk for disease. These studies usually include the collection of health and environmental data and biological specimens from hundreds of thousands of people over a period of a decade or longer. Data and biospecimens are typically maintained in databases and repositories and are used by many researchers to determine associations between environmental factors and disease. Some scientists believe that a new large-scale LPS involving 500,000 to 1 million participants is the next logical step for deepening our understanding of the relationship of genes and the environment in human disease.
The SACGHS report is based on two years of fact-finding, public consultation, and deliberation. The report identifies five areas that require further analysis and consideration by the Secretary of HHS prior to making a decision as to whether a new LPS could take place: research policy; research logistics; regulatory and ethical considerations; public health, social, and economic implications; and public engagement. Among the specific issues identified are the funding impact on other areas of medical research; the need for environmental exposure measures and detection methods; challenges associated with data sharing and access to study findings across multiple study sites; the need to ensure confidentiality of participants’ personal and health data; and a need to assess the study’s social and economic implications with a particular focus on health disparities. The report also discusses the critical role of the public and that public interest in participating in such a study was not clear and would need to be assessed. The report also concludes that the Secretary should initiate a thorough consideration of the full range of policy issues outlined in the report and that the public at large, the scientific community, a relevant Government agencies and policymakers, and the private sector stakeholders should be engaged in the process.
SACGHS was established in 2002 to assess the broad range of human health and societal issues raised by the development and use and potential misuse of genetic technologies. SACGHS is composed of 13 non-governmental national experts in a range of scientific and professional disciplines as well as 19 non-voting ex officio representatives from a number of HHS agencies and offices and other components of the Executive Branch. More information about SACGHS is available at http://www4.od.nih.gov/oba/SACGHS.htm.
The report describes the preliminary questions that should be addressed to help policymakers decide whether the U.S. Government should undertake a new large population study (LPS) of genes, environment, and disease. The aim of such studies is to determine linkages between environmental factors and exposures and risk for disease. These studies usually include the collection of health and environmental data and biological specimens from hundreds of thousands of people over a period of a decade or longer. Data and biospecimens are typically maintained in databases and repositories and are used by many researchers to determine associations between environmental factors and disease. Some scientists believe that a new large-scale LPS involving 500,000 to 1 million participants is the next logical step for deepening our understanding of the relationship of genes and the environment in human disease.
The SACGHS report is based on two years of fact-finding, public consultation, and deliberation. The report identifies five areas that require further analysis and consideration by the Secretary of HHS prior to making a decision as to whether a new LPS could take place: research policy; research logistics; regulatory and ethical considerations; public health, social, and economic implications; and public engagement. Among the specific issues identified are the funding impact on other areas of medical research; the need for environmental exposure measures and detection methods; challenges associated with data sharing and access to study findings across multiple study sites; the need to ensure confidentiality of participants’ personal and health data; and a need to assess the study’s social and economic implications with a particular focus on health disparities. The report also discusses the critical role of the public and that public interest in participating in such a study was not clear and would need to be assessed. The report also concludes that the Secretary should initiate a thorough consideration of the full range of policy issues outlined in the report and that the public at large, the scientific community, a relevant Government agencies and policymakers, and the private sector stakeholders should be engaged in the process.
SACGHS was established in 2002 to assess the broad range of human health and societal issues raised by the development and use and potential misuse of genetic technologies. SACGHS is composed of 13 non-governmental national experts in a range of scientific and professional disciplines as well as 19 non-voting ex officio representatives from a number of HHS agencies and offices and other components of the Executive Branch. More information about SACGHS is available at http://www4.od.nih.gov/oba/SACGHS.htm.
posted by Aloyzio Achutti at 2:04 PM
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