The NIH is hosting a State-of-the-Science Conference from August 24-26 to assess the available scientific evidence related to the following questions:
- What are the key elements of a family history in a primary care setting for the purposes of risk assessment for common diseases?
- What is the accuracy of the family history, and under what conditions does the accuracy vary?
- What is the direct evidence that getting a family history will improve health outcomes for the patient and/or family?
- What is the direct evidence that getting a family history will result in adverse outcomes for the patient and/or family?
- What are the factors that encourage or discourage obtaining and using a family history?
- What are future research directions for assessing the value of family history for common diseases in the primary care setting?
For more information, or to register for the conference, please go to: http://consensus.nih.gov/2009/2009FamilyHistorySOS031main.htm
The Department of Health and Human Services (HHS) has released a fact sheet and guidance about the Genetic Information Non-Discrimination Act (GINA 2008) for researchers and health care professionals.
To view the fact sheet, go to: http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf
To view the guidance, go to: http://www.hhs.gov/ohrp/humansubjects/guidance/gina.pdf
The Genetic Alliance will hold its annual conference from July 17-19 in Washington, DC. The conference, “Discovering Openness in Health Systems,” will bring together advocates, health professionals, policymakers, industry professionals, and community leaders to engage in open discussion on a range of topics in genetics and advocacy. Genetic Alliance will offer a limited number of scholarships to reduce participation costs. The deadline for scholarship applications is May 11.
Visit the Genetic Alliance website to register or to learn more about the meeting: http://www.geneticalliance.org/conference09
The Health Resources and Services Administration (HRSA) is requesting nominations to fill two (2) vacancies on the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). The Secretary of Health and Human Services is soliciting nominations for individuals with expertise either in ethics or infectious diseases. This is the committee that recommends conditions to be added to the NBS panel and recommends priorities for the genetics collaboratives.
All nominations may be submitted to Michele A. Lloyd-Puryear, M.D., PhD, Designated Federal Official and Executive Secretary, Advisory Committee on Heritable Disorders in Newborns and Children, at: Maternal and Child Health Bureau, Health Resources and Services Administration, Room 18A-19, Parklawn Building, 5600 Fishers Lane, Rockville, Maryland 20857. Nominations will not be accepted by e-mail or facsimile.
For more information, go to http://edocket.access.gpo.gov/2009/E9-7425.htm