Genetic Alliance Policy Bulletin

Genetic Alliance Policy Bulletin

Weekly Policy Bulletin
An update brought to you by Genetic Alliance
1 February 2010 Issue # 231
SCID Recommended for Universal NBS

In a historic vote on January 21, the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) unanimously agreed to recommend the addition of Severe Combined Immunodeficiency (SCID) to the uniform newborn screening panel. SCID is a group of disorders characterized by the absence of an immune system causing infants with SCID to develop recurrent infections, leading to death in early childhood. Treatment in the first months after birth can prolong life and prevent infections. Massachusetts has developed cost-effective methods for universal screening for SCID, and a number of other states have started to train their laboratory personnel to start screening for SCID.

The ACHDNC adopted a list of 29 recommended conditions in September 2005. Since that time, SCID is the first condition to be added to this list for inclusion into mandatory newborn screening conducted by state public health programs.

View the Genetic Alliance press release


SACGHS Meeting February 4-5

The Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) will hold its first meeting of 2010 on Thursday, February 4 and Friday, February 5 in Washington, DC. The charge of SACGHS is to provide recommendations on the application, use, and implications of genetic and genomic technologies in the healthcare system and society to the Secretary of the Department of Health and Human Services. The upcoming two-day meeting will focus on genetics education and training; genomic data sharing, including a review of objectives, mechanisms, and policies; and gene patents and licensing practices, among other topics. The meeting is open to the public, and registration is not required.

Learn more, including how to submit public comments


FY 2011 Budget Released Today

The White House released the President’s Fiscal Year (FY) 2011 Budget this morning, and various federal agencies will hold individual briefings throughout the afternoon. At 1:00 pm EST today, Kathleen Sebelius, Secretary of the Department of Health and Human Services (HHS), will present the HHS FY 2011 Budget. The briefing will be available live via webcast at http://www.hhs.gov/live, with supporting materials available later this afternoon at http://www.hhs.gov/budget.

Also today at 1:00 pm EST, John Holdren, Director of the Office of Science and Technology Policy (OSTP) in the Executive Office of the President, with other OSTP and federal agency officials, will provide an overview of the FY 2011 Science and Technology R&D Budget. A webcast of the briefing will be available at http://www.aaas.org/go/ostp.

View the White House blog post on the release of the FY 2011 budget


Edited by: Marcus Glassman, Molly Brenner, Andria Cornell, and Sharon F. Terry

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