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Open Access Policy

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On February 19, 2020, White House Office of Science and Technology Policy (OSTP) opened up a new Request for Information (RFI) on the issue of Public Access to the Results of Federally Funded Research. Access the notice of RFI here.

As you know, despite the fact that U.S. taxpayers spend upwards of $65 billion each year to fund basic and applied research, the articles that report on the results of this work are too often locked behind expensive paywalls, and the data remain largely inaccessible. The Administration is looking for community input on changing this, and this RFI process is our chance to provide crucial guidance. This is a critical time in U.S. policy development, and we strongly encourage you to consider submitting a response.

The RFI is only open for a very short time - submissions are due into OSTP by April 6, 2020. To help you, Genetic Alliance hosted a webinar with Heather Joseph of SPARC to discuss the questions, provide talking points for your potential responses, and walk through the submission process. You can access the webinar recording here.

Please direct any questions about the RFI submission process to Vilma Whittier.


Policy Statements

We have fought to see Open Access policy enacted for well over a decade, and it’s important to let the White House know that there is deep support for this policy from our community. In January 2020, Genetic Alliance signed on to this letter to the President along with other patient advocacy groups expressing our strong support for such a policy.

The U.S. government funds more than $60 billion in scientific research each year on behalf of the public. Making sure that the results of this research are readily accessible to all people will speed the pace of scientific discovery, spur innovation, provide fuel for the creation of new jobs across a broad spectrum of the economy – and, importantly, will give patients and their families hope of finding cures to rare and currently untreatable diseases.

We’ve made slow but steady progress towards our goal getting this information into the hands of the public as quickly as possible, starting with a policy requiring all NIH-funded research articles to be made available within one year of publication, and successfully expanding that policy (via legislation and White House memorandums) to cover all federally funded scientific research.

An immediate open access policy would bring the U.S. in line with other nations around the world that are increasingly adopting immediate Open Access policies. Last year, more than a dozen national research funders across Europe introduced “Plan S” to make all scientific works freely available as soon as they are published. Support for Open Access has also grown among private research funders, with foundations requiring immediate open access to articles and data. 

Archived Policy Statements

Comments on ONC Interoperability, Information Blocking, and the ONC Health IT Certification Program Rule, June 3, 2019

Letter to Congress in Support of PCORI, 2017

Genetic Alliance Supports New NIH Policy on Clinical Trials, September 16, 2016

21st Century Cures –Request for Feedback: A Modernized Framework for Innovative Diagnostic Tests, January 5, 2015

Comments on NPRM amendments to the Common Rule, January 2, 2015

21st Century Cures Initiative Proposals, November 12, 2014

Remark by the President - Inovation Speech, October 9, 2014

Proposal for Public Awareness and Advocacy Campaign: Educating the Public to Understand the Learning Healthcare System and What It Takes to Get Us There

Genetic Alliance Response to the NIH Draft Genomic Data Sharing (GDS) Policy, November 20, 2013

Sign-on letter to the Response to the NIH Draft Genomic Data Sharing (GDS) Policy, November 20, 2013

Genetic Alliance Leadership Role in Open Access Policy Changes Implemented by NIH, July 5, 2013

Genetic Alliance Supports Patient Access to Laboratory Test Results, November 15, 2011

Sharon Terry Testifies at Public Access Federally-funded Research Hearing, July 29, 2010

Genetic Alliance Speaks at FDA Transparency Task Force Meeting, June 24, 2009

Comments to the National Institutes of Health on Open Access Policy, March 20, 2008

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