Advocacy, Education & Empowerment

Genetic Testing Summit

Your role is critical!

Throughout the day we will be collecting the ‘elephants in the room’, the points of tension, the potential solutions and enlisting participants for crafting system improvements.

Learn more and register here

Meet the Challenge

Meet the Challenge!

Help us meet the challenge! Council member Kemp Battle is offering a match for each contribution we receive up to a total of $50,000. Please donate today, and then check back to see our progress.

Follow @geneticalliance

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# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

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# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

What is this?

Network

Meet Your Neighbors

Meet Your Neighbors

Genetics Home Reference, a service of the U.S. National Library of Medicine, provides consumer-friendly information about the effects of genetic variation on human health. Specifically the Genetics Home Reference provides resources about genetic conditions, genes and chromosomes summaries, a handbook for understanding human genetics, and links to other helpful resources.

View all our "neighbors"

Click here to become a "neighbor"!

Policy

Proposed Bill Prevents Public Access
to Research Papers

The Research Works Act, a bill introduced by Representatives Darrell Issa (R-CA) and Carol Maloney (D-NY), looks to reverse the National Institute of Health’s (NIH) public access policy. This policy, introduced four years ago, requires researchers with NIH funding to submit published manuscripts to Pubmed Central, a publicly accessible database. The new bill would no longer require researchers to make such a submission.

Read Michael Eisen's response.

Read publishers' response.

NIH Funding
Includes Creation of NCATS

President Obama signed the 2012 omnibus spending bill into law on Friday, December 23, 2011. The $915 billion bill, which generated passionate debate in Congress, increased spending for several science agencies, including the NIH (National Institutes of Health). The 2012 budget for the NIH will increase by $299 million compared to last fiscal year – to $30.7 billion – with almost half the entire budget going towards the creation of the new National Center for Advancing Translational Sciences (NCATS).

NIH Director Francis Collins recommended this center last year, with the increasing importance of promoting translational research – it will replace the National Center for Research Resources (NCRR).

Read more about funding in Nature.

CMS Proposes Implementing Part of
Affordable Care Act

The Centers for Medicare and Medicaid Services (CMS) posted a notice of proposed rulemaking (NPRM) on December 14, 2011. The proposed rule looks to put in place Section 6002 of the Affordable Care Act, also called the Physician Payment Sunshine Provision; making information about transfers (financial and otherwise) between medical suppliers covered by Medicare and Medicaid and physicians publicly available. It would also publicize information about potential conflicts of interest for a given physician, with concerned parties given 45 days to review and correct information prior to being released.

The previous deadline for a final ruling on the “Sunshine Act” was October 1, 2011, but CMS has requested public comments prior to implementing the new regulations.

Read and respond to the notice by February 17, 2012.

Is there a future for SOPA and PIPA?

The Stop Online Piracy Act (SOPA) and lesser-known Protect IP Act (PIPA) have generated considerable media attention in the past week; with websites like Wikipedia and Google publicly protesting the legislation on January 18, 2012. The two bills essentially deal with intellectual property and copyright protections, but have produced a vast range of reactions and interpretations.

Supporters of SOPA claim that it only looks to target foreign websites counterfeiting US property. Opponents of SOPA and PIPA, however, worry that the ambiguous language of the bills could have drastic and unintended consequences for US websites and companies. Because of the recent public backlash towards the bills, both are currently shelved in Congress; with voting being postponed.

Read about current state of SOPA and PIPA in Washington Post.