The Importance of Advocacy as a Scientist

Lynn Jorde, PhD
Lynn Jorde, PhD

Scientists are in the unique position to directly convey the benefits of human genetics and genomics research to policymakers. It is critical that we communicate the benefits of human genetics and genomics research to Congress because decisions happen on the Hill that affect research and the use of genetics-based technologies – with or without our input.

Scientists as advocates bring expertise in evidence-based decision making and, by reaching out to policymakers, we can help influence them to pursue policies that advance biomedical science and the appropriate application of genetics in health and society. Policymakers need to understand that genetics and genomics is fundamental within modern biological science and leads to a diverse array of technologies and applications that enhance human health and well-being. They also need to understand how our field boosts the U.S. economy. Last year, the GPAC committee led the development of a major new ASHG report showing that the human genetics and genomics industry generates over $108 billion direct economic activity each year and ultimately supports a total of more than $265 billion across the U.S. economy. The overall economic impacts of U.S. investments in human genetics and genomics research generates a return on investment (ROI) of more than 4.75 to 1.00.

We need to communicate to Congress the scientific, health and economic benefits that come from research on the human genome, and that robust, sustained funding for the National Institutes of Health (NIH) is vital for sustaining this progress. In the past several years, policymakers have provided this robust support for biomedical research, with Congress delivering year-on-year increases to the NIH. However, the President’s budget this year does not propose an increase for NIH’s core programming, and there are proposed cuts for the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI). It is therefore especially important for scientists to advocate for funding increases this year. Sustained funding increases for the NIH are critical to ASHG’s mission that people everywhere realize the benefits of human genetics and genomics research.

– Lynn Jorde, PhD, Chair of the ASHG Government & Public Advocacy Committee (GPAC)

Cynthia Morton, PhD

As scientists, we need to continue to engage with Congress if we want federal policies that are pro-science. Scientists should care about advocacy because, without it, essential problems might never receive the attention they rightfully deserve. For example, the health disparities faced by certain communities and disenfranchised populations might fail to be addressed. By communicating with policymakers, we can help them understand how human genetics and genomics research and the application of genetics-based healthcare tools can be carried out in a way that avoids such disparities so that all people realize the benefits of these scientific advancements.

Scientists as advocates can have a powerful role to embolden scientific initiatives, push for evidence-based decision-making, and serve as a force for good. Being a good advocate is like being a good scientist – you must research the background to gain appreciation of an issue and strategize an effective approach. Effective communication with Congress requires being informed about the special interests of legislators representing diverse states and districts with various unique resources and challenges. Congress is charged with making decisions about funding science; however, it is impossible for them to be fully informed about the many facets of science funded by the federal government. Scientists must describe the frontiers in which they work using understandable language, illustrate the importance of fundamental discovery science, and explain the feasibility of a particular policy and its implications for public benefit. Scientists have a responsibility to communicate the value of human genetics & genomics research and articulate how robust federal research funding is essential for all people to benefit from scientific discoveries.

– Cynthia Morton, PhD, Incoming Chair of the ASHG Government & Public Advocacy Committee (GPAC)

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