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March 2009

10 Ideas Changing the World Right Now
Time Magazine
The cover article in the March 23, 2009 issue of Time magazine features biobanks at #8.  Carolyn Compton, director of the NIH NCI Office of Biorepositories and Biospecimen Research, and Randall Burt of Huntsman Cancer Institute in Utah are quoted in this article. 
 

Prostate Test Found to Save Few, if Any, Lives
The New York Times
This health section article features study co-author Dr. Barnett Kramer, Director of the Office of Disease Prevention, NIH-OD. The original study is also available in a
NEJM article.

New in Rockville:  Cafe Scientifique
For the price of a cup of coffee or a glass of wine, anyone can come to Café Scientifique to explore the latest ideas in science and technology. Meetings take place in cafes, bars, restaurants and even theatres, but always outside a traditional academic context.

Update: 
Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards

For additional information please see:http://www.hhs.gov/ohrp/humansubjects/guidance/gina.html


New TwinBank: 
http://www.timesonline.co.uk/tol/news/uk/science/article6004963.ece
A database of 300,000 pairs of twins that would be by far the largest in the world is being planned by British scientists to investigate the genetic and environmental origins of disease and behaviour.


April 2009

Genes Show Limited Value in Predicting Diseases 

* Original NEJM articles:
http://content.nejm.org/cgi/reprint/NEJMra0808700v1.pdf
http://content.nejm.org/cgi/reprint/NEJMp0806284v1.pdf
http://content.nejm.org/cgi/reprint/NEJMp0810107v1.pdfpdf
http://content.nejm.org/cgi/reprint/NEJMp0808934v1.pdf

* NYTimes articles:
http://www.nytimes.com/2008/09/16/science/16prof.html?sq=genome%20wide&st=cse&scp=3&pagewanted=print
http://www.nytimes.com/2009/04/16/health/research/16gene.html?sq=genome%20wide&st=cse&scp=1&pagewanted=print

* ISBER: March 2009  Newsletter
http://www.isber.org/newsletters/March09C.pdfsq=genome%


May 2009

GINA Legislation Update
The National Human Genome Research Institute (NHGRI) released a fact sheet on the Genetic Information Nondiscrimination Act (GINA) for researchers and healthcare professionals to explain how the law protects against genetic discrimination in health insurance and employment settings and the impact of the law on clinical research.  The link to this document is as follows:
http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf


A guidance document entitled “Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards” has been issued by the Office for Human Research Protections (OHRP).  This is intended primarily for investigators who conduct, and institutional review boards (IRBs) that review, non-exempt human subjects research that is supported by HHS involving genetic testing or collection of genetic information.  This document provides background on protections provided by GINA and discusses some of the implications of GINA for investigators who conduct, and IRBs that review, genetic research.  The guidance document is posted in the following link and commentary is welcome:
http://www.hhs.gov/ohrp/humansubjects/guidance/gina.html  

The Equal Employment Opportunity Commission (EEOC) released a notice of proposed rulemaking (NPRM) for Title II of GINA. Title II of the law protects individuals from genetic discrimination in employment and will be implemented in November 2009.   The public is invited to submit comments to the NPRM until May 1, 2009.  The following link provides a summary of the NPRM:
http://www.eeoc.gov/policy/docs/qanda_geneticinfo.html

Clinical validation of molecular pathology tests:
The attached important article on the clinical validation of molecular pathology tests was just published in the May issue of Arch Pathol Lab Med.
http://arpa.allenpress.com/pdfserv/10.1043/1543-2165-133.5.743

 
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