Outside Voices: Advocating for Research with Mary Woolley, Research!America
ASHG: What is the state of support for biomedical research in Washington today?
Ms. Woolley: After several years of flat federal funding for research that, due to inflation, nearly wiped out the increases seen during the years of doubling the NIH budget, we have benefited from much-needed funding increases in recent years. The annual Congressional appropriations process, that is, the development of the budget that funds NIH, CDC, NSF, FDA, and AHRQ, among many other federal agencies, is intended to be completed by the beginning of a new federal fiscal year (e.g., October 1, 2019 for FY20).
In recent years, this deadline has passed without resolution, setting up flat-funding via Continuing Resolutions (CRs). This year, despite bipartisan agreement on some issues (including medical and health research) there is dramatic disagreement on other issues (including but not limited to funding a border wall). CRs hamper momentum, discoveries, and advances, and are particularly discouraging for young scientists who rightly question the security of a career in science.
The current CR expires on December 20, 2019. Biomedical research is a nonpartisan national priority benefitting us all. Readers of The Messenger can help. Please join Research!America’s #CRsStopProgress campaign using email and Twitter to make the case for completing the 2020 budget so research funding can grow to accommodate more of the currently unfunded opportunity in science. Let your elected officials hear from you! While we have a number of wonderful champions in the Congress on both sides of the aisle, more are always welcome. Part of the reason there continues to be strong support for biomedical among policymakers is the strong support of their constituents, including scientists.
Public opinion surveys we commission regularly show strong support nationwide for medical research. A strong majority — 84% of respondents — in a nationwide survey earlier this year the 2019 said it is “very” or “somewhat important” that the President and Congress assign a high priority to faster medical progress. But we also know that many people take progress in science for granted, and don’t consider speaking up for it. Again, that’s where you come in; don’t outsource advocacy!
ASHG: Tell us about your message framework of “Then. Now. Imagine” and why it is so powerful for advocacy.
Ms. Woolley: Then. Now. Imagine. Progress achieved by the research community is extraordinary. In the words of former Congressman and former Research!America board Chair, Paul G. Rogers: “Without research, there is no hope.” Aligning with public aspirations to imagine a future where diseases have been halted or cured is the heart of our mission. And it is a useful way to frame both progress to date and hope for the future.
Research!America was founded 30 years ago. Back then, too many lives were cut short due to our inability to identify mutations that predispose patients to developing breast, bone, and prostate cancers. Because our nation has invested in research, today those patients can be screened earlier, giving them more of a fighting chance. Now, imagine a time when we can screen for and treat all cancers. Imagine preventing cancer altogether. Then-Now-Imagine.
Another example: not long ago, pronounced problems with memory, communication, and behavior were widely considered to be normal aspects of aging. Before 1987, no genes associated with the condition we now know as Alzheimer’s disease had been identified. We had very few drugs or therapies for treatment. Today, we have identified several genes associated with Alzheimer’s, with more than 500 clinical trials underway to assess potential therapies. And now, imagine – aging and thriving without the threat of dementia or Alzheimer’s. Then-Now-Imagine.
ASHG: Regardless of political party, it is a challenging era in Washington. Why is it important to keep Congress focused on continued research funding amid the politics?
Ms. Woolley: Our nation has been through eras of political polarization before and likely will again. Yet even in challenging times, some things don’t change, including eventual passage of budgets and attention to policies that advance public priorities. These are, in fact, Constitutional duties of those in Congress. Whether science continues slowly or robustly, with strong bipartisan support, is up to the members of Congress and those whom they serve — their constituents.
Researchers and stakeholders in research are constituents and must make it a routine practice to let their elected officials know about the value of research. Ask yourself, if you saw your member of Congress getting coffee at the local Starbucks, would you recognize her? Would she recognize you? Members of Congress are responsive to their constituents. Too often members of the science community are essentially invisible to the public and public policymakers.
Our commissioned public opinion survey data shows that the public agrees that it is important for scientists to inform policymakers about their work.
ASHG: Early-career scientists represent the future of the field. Why are sustained, predictable funding increases important for early-career scientists?
Ms. Woolley: We know that early-career scientists face unique challenges as they leave graduate programs and plan their futures. When a career in science appears to be a less stable course than other workforce sectors, the pipeline of promising new scientists is compromised. New graduates might be more inclined to take positions that are less dependent on federal funding. They may eschew science and medical research all together — which is really distressing!
ASHG: How can early career scientists engage in advocacy directly?
Ms. Woolley: It is exciting to see more and more early-career scientists forming active networks with the purpose of engaging in advocacy, from efforts such as participating in Science Society Hill Days and science policy Twitter chats to more sustained programming like forming science policy interest groups on campus. By holding civic engagement events, these groups bring awareness not only to their own research projects, but also to how science can inform policies on issues that impact local communities.
A new program at Research!America provides competitively-awarded microgrant funding for student groups to hold policy and community engagement events. For example, last year one of our microgrant recipients held briefings for their State Legislature on topics included in the debate cycle. In 2020, another science policy group will host a series of events to explore ethical questions surrounding discoveries made in the lab and potential benefits and drawbacks to society. The topics will include plant-based meat alternatives, wildfires, CRISPR gene editing, and artificial intelligence, bringing together STEM students with graduate students in law, journalism, and public policy.
ASHG: Advocacy involves bringing together diverse voices in support of a unified goal. How can one scientist make a difference?
Ms. Woolley: Great advocacy is about many groups and individuals aligned in speaking for research. There is an important role for everyone. We know from public opinion surveys that while there is a high level of public trust of scientists, scientists and science-based institutions are essentially invisible. Four out of five members of the public cannot name a living scientist and two-thirds cannot name an institution where medical or health research is conducted (even though research is conducted in every state).
Scientists can engage with the public through public events, forums, Q&As, and other outreach events, or just around the holiday dinner table. Research shows that people who aren’t trained in science respond much better to storytelling than lectures! Think about talking about “who I am” (the kind of person who works to prevent cancer) and “why I do what I do” (“I work for you”!). Use the “Then/Now/Imagine” message frame and speak in terms that make it clear that scientists share public aspirations for faster medical progress.
In truth, we are all patients, and in fact, scientists are working in the public’s interest. One scientist telling their story can raise awareness for science, increase public support, and help drive a vital and thriving scientific enterprise.