News and Events

Highlights

• NCEC Newsletter, September 2007 (PDF)
  
  
• New Approaches to Make Bone Marrow Transplantation Safer and More Effective (PDF) - 04/24/2007
  
  
• SACGHS Releases Final Report on Large Population Study
  
  Secretary's Advisory Committee on Genetics, Health, and Society
  Releases Report on Policy Issues Associated with Undertaking a New Large U.S. Population Cohort Study of Genes, Environment, and Disease
  
  The final SACGHS Report on is now available at:
  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 takeholders 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.
  
  
• Call For Abstracts

  2007 AMCHP Annual Conference

  The Association of Maternal and Child Health Programs (AMCHP) calls for abstracts for its 2007 annual conference to be held March 3-7 in Arlington, VA. The theme of the conference is Healthy Communities. The 2007 conference will highlight the importance of healthy communities for women, children and families. Abstracts should address the challenges and opportunities that public health professionals face as they work to build healthy communities. Topics may include environmental health, public-private partnerships, systems building and family involvement, as well as emerging issues — such as disaster preparedness — from a community perspective. Priority will be given to abstracts that reflect promising and evidence-based practices. For more information please visit, http://www.amchp.org/policy/bestpractice-definition.htm.
  

Upcoming Events

• The 2nd Sickle Cell Disease Awareness Symposium, May 11, 2007
  Flyer | Agenda
  
  
• March Events for Grantees (PDF)
  
  
• March Events and Activities (PDF)
  
  
• International Conference on Urban Health (Local)

  The 6th Internatonal Conference on Urban Health (ICUH) will be held this year in Baltimore Maryland on October 29-November 1 2007, and is being hosted by the Johns Hopkins Bloomberg School of Public Health (Urban Health Institute) and the University of Maryland at Baltimore. The theme is information systems and management to address disparities in urban health. The meeting welcomes presentations to all topics related to urban health, domestic and international. Details of the meeting, including abstract deadlines can be found on http://www.icuh2007.org

  
  
  
• THE FOURTEENTH NATIONAL HIPAA SUMMIT - March 26 - 31, 2007

  Hyatt Regency on Capitol Hill, Washington, DC
  

• Memorial Healthcare System Hollywood, Florida
  1st Annual Sickle Cell Disease Educational & Research Symposium
  February 21 - 23, 2007 More info (PDF)
  
  

In the News

Sickle Cell Information Center Updates

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