Open Access to Genetic Research
Updated On Feb 24, 2022
This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.
Introduction
Open access refers to the free, unrestricted access to research outputs (i.e., journal articles and books). Typically, when research is published, the authors send it to a journal that specializes in that topic of research. For example, if someone did a research project in cancer, they might send it to the Journal of Clinical Oncology. The Journal of Clinical Oncology would then review it and decide if they wanted to publish it.
Because it costs money to publish a journal, journals often charge people to read the material that they publish. Many health care providers and hospitals have subscriptions to journals in their area of expertise. However, a patient who wants to learn more about their disease would likely have to pay for every article that they want to read.
Some journals are open access journals. They do not charge anyone to read their articles; they cover the operating costs of the journal in other ways. Other journals allow publishing authors to pay the journal to make their article open-access. Others do not support open access at all.
Especially for research that is funded through government institutions (i.e., tax dollars), there are debates over whether or not research should be open access. On one hand, open access allows more people to access research, which could improve research. On the other hand, requiring open access could limit a journal’s ability to publish, as it would take away a revenue source.
In 2013, the Director of the White House Office of Science and Technology Policy (OSTP) directed large federal agencies conducting scientific research and development to come up with a plan to increase public access (i.e., open access). A summary of the plans created by the NIH, FDA, CDC, AHRQ, ASPR and ACL can be found here.
Legislation and Regulation
Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.
Policy Positions
Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on open access. Explore these position statements below.
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