Article compiled by CaSP Communications Chair April MacIntyre
This November, the National Science Policy Network (NSPN) and Catalysts for Science Policy (CaSP) teamed up to host the annual National Science Policy Symposium (NSPS) at the University of Wisconsin-Madison in the Wisconsin Institute for Discovery. This year’s theme was Leveraging Science and Technology to Benefit Marginalized Populations, and was intended to educate all attendees on STEM related issues that disproportionately, often negatively, affect vulnerable populations. Not only did the symposium aim to educate, but it also provided ample networking opportunities and training sessions. Following are several reflection pieces from CaSP members who attended NSPS, and what the experience meant to them.
Shannon Walsh, CaSP Co-president, NSPS organizer, Comparative Biomedical Sciences Program
As one of the Symposium organizers, we aimed for the core of the Symposium to consist of four panel sessions hosted in the Discovery Building. These sessions were intended to spark discussions on the ways science and technology policy currently intersect with marginalization of various communities.
The first speaker session I attended focused on issues of underrepresentation and communication. This featured panelists Neena Nizar, a rare disease research advocate, Rick Smith, a biocultural anthropologist, and Dietram Scheufele, a science communication expert. The second session centered around the multifaceted barriers to health equity across populations, and gleaned insights from speakers Lee Wilke, a breast cancer surgeon, Niasha Fray, a population health expert, and Pilar Ossorio, a bioethics law professor. The afternoon opened with a discussion on the interplay between technological advancements and the livelihood of underserved communities. This was led by Nicol Turner Lee, an advocate for universal broadband access and elimination of bias in artificial intelligence, Afua Bruce, a cybersecurity expert and policy advisor, and Olufunmilola Abraham, an interdisciplinary researcher of technology use in medical interventions. The fourth and final panel featured Kamal Bell, middle school teacher and founder of Sankofa Farms, Dan Lewerenz, active attorney for the Native American Rights Fund, and Jonathan Patz, climate change and global health expert. This session broadly considered the use and misuse of natural resources, the disproportionate threat of climate change on vulnerable populations, and perspectives on communicating across various boundaries.
Though these sessions covered highly disparate issues, the speakers unknowingly weaved a common thread of advice across all panels: stop offering assistance to those who are underserved without first listening to what they actually need. This point was particularly resonant in the context of advocating for those suffering from rare diseases, communicating about land rights with Native populations, and helping those with limited resources make informed medical decisions for themselves and loved ones.
I drew tremendous gratification from witnessing so many audience members actively engage with each of these panel discussions. I was grateful for all of the wonderful audience questions that sparked insightful conversations, and was thrilled to see personal connections formed between speakers and attendees. Thank you to everyone who helped to facilitate these panels, and to all of those who participated!
Chris Unterberger, CaSP Outreach Chair, Pharmaceutical Sciences Division
NSPS 2019 was my first interaction with the national breadth of NSPN. Though I have interacted with various NSPN members via social media it was exciting to finally get to meet a lot of the members with whom I share a passion for science communication and policy. The symposium created the perfect environment to foster these initial interactions, thanks to a planning team that booked great venues, speakers, and food. Fortunately, the event took place a stone’s throw from my apartment, which allowed me to ease into the days’ events comfortably and confidently. This made all the difference when attending social events and checking people into the symposium. Though the workshops I attended provided concrete and practical ways for me to better my science communication, policy advocacy, and involvement in local politics, it was the keynote speaker, Danni Washington, that inspired me to take action! Her story and lessons moved me to dive deeper into policy advocacy and science communication. NSPS provided me with knowledge as well as motivation to grow my career.
Jenny Bratburd, CaSP Policy Engagement Chair, Microbiology Doctoral Training Program
The intersection of health research and racial bias repeatedly came up during NSPN, and left a big impression on me. In the session “Health and Wellness: From Bench to Whose Beside?” several speakers noted how research can perpetuate biases and disparities. For example, scientists often end up using racial categories in research, even though race does not have a biological basis. Speakers in “Genetics, Privacy, and Policy” pointed out that human genomic research using race can be misconstrued by prejudicided groups to support their biases. Further, in both sessions, speakers described how a long history of unethical experiments involving marginalized groups led many people from these groups to not trust scientists. Coupled with bias towards oversampling in white populations, there is a large disparity in genomic information available from different populations. In the “Using Basic Research to Address Health Disparities” workshop, participants brainstormed what barriers affect marginalized populations access to and participation in research, like transportation or language. Niasha Fray, a panelist, drove home the effectiveness of community engagement, like talking with patients to motivate to follow-up with their cancer treatments, and how her own battle with cancer affected her values. Better science and healthcare come from community partnerships that include diverse groups of people, legitimately address concerns, and respect participant choices.
Grant S. Hisao, Postdoctoral Research Associate in Biochemistry
The most valuable experience of NSPS was making new connections and strengthening existing connections with like-minded individuals from various parts of the country. In particular, I was grateful for the opportunity to meet with my colleagues on NSPN’s Grants and Finance Committee and NPSN’s Diversity, Equity, and Inclusion Committee. These committees, along with four other committees, were established earlier this year to give members an opportunity to help pursue the goals of the organization. Prior to the symposium, each committee was meeting on a monthly basis by video conferencing. NSPS 2019 was the first time that members of various committees met each other in person and were able to conduct business in the same room. Though I was able to work with my committee colleagues virtually since the inception of the committees, meeting people face to face for an extended period of time was a surreal experience. It allowed us to develop stronger relationships, which in turn fosters better teamwork. This experience encouraged me to continue being involved with NSPN.
Sarah Alexander, CaSP member, Civil & Environmental Engineering and Life Sciences Communication
The first session I attended at NSPS 2019 was called, “Advocating for Diversity and Inclusion as a Student Group: Starting equity and social justice conversations in your STEM community.” At the session over 40 attendees packed into a room to listen to the IDEA (Inclusion, Diversity and Equity in Astronomy) organization that is working to address barriers that keep marginalized communities from participating in STEM. After taking time for each attendee to introduce themselves, the speaker gave an overview of the IDEA group at the University of Chicago, including how it was started, the format, and what initiatives they have been working on. Although time was short and the discussion could have gone on for much longer, one aspect stood out to me. The group developed a unique format and structure for meetings that allowed specific time for the discussion of diversity and inclusion related incidents and issues. Great emphasis is placed on making each member feel welcome and free to speak their mind on a range of issues. If at any point someone feels marginalized by a comment or remark, any other member is allowed to call it out. Conversation stops and the two members confront the issue in real time, apologizing and helping one another understand how the comment or action was not inclusive. I was struck by the ways that these clear structures for discussion were normalized within the group, allowing them to openly discuss critical issues.
I also attended Scientists as Citizens: Local government engagement for scientists and engineers. In this session, representatives from the non-profit Engineers & Scientists Acting Locally (ESAL) provided ways that scientists and engineers can get involved in policy at a local level. ESAL presented practical ways to provide input on local laws, join an advisory commission, advise a lawmaker, and run for office. Participants asked many great questions including the value of joining an advisory committee in you school community, where to find opportunities, and the trade-off between waiting for the right opening that aligns with your interests versus engagement now.
Laura Borth, CaSP Operations Director
The panel discussion that meant the most to me at NSPS was called, “Representation: Fighting Biases and Navigating Labyrinths.” This panel brought together diverse minds to discuss biases: Dr Dietram Scheufele, a life science communications professor with insight on gender and the public, Dr. Neena Nizar, a professor and advocate for rare diseases, and Dr. Rick Smith, a postdoctoral fellow who researches genetics and politics.
I was struck by Neena’s story. She was born with Jansen’s disease which causes bones to become soft and bend. It took years for her to find a correct diagnosis, even after Neena’s son developed symptoms. She described the struggles of several kinds of biases. First, she dealt with anchoring bias, the inadequate adjustment of probabilities when disconfirming evidence is presented, and doctors’ status quo bias, where doctors stick to their initial diagnosis even when presented with an increasing number of alternatives. Through her own research she encountered the work of a professor who studies Jansen’s disease and finally received the correct diagnosis. Wanting to raise awareness and support for Jansen’s disease research, she was finally confronted with framing outcome bias, where her experience as a patient painted her as emotional instead of rational.
Dietram came to the discussion with research on why we “refuse to know things” and how more information can either reinforce biases or cause people to hold onto incorrect views. For example, if you poll Americans, most agree that, according to the theory of evolution, humans developed from an earlier species of animals. However, if you reframe the question to ask if they believe in evolution, only 40% do, demonstrating how we may understand the scientific theory but we don’t always want to believe what science tells us should be true. On an academic level, Dietram discussed how researchers are not immune to the biases they study, citing a study where male professors viewed research about gender bias to be less rigorous. This study also showed that professors have a subtle bias favoring male students. As a female student, this concerns me.
Continuing with the topic of gender, Rick reminded us that gender is bimodal (two overlapping peaks) but isn’t binary (two peaks that don’t overlap). His work advances science justice by highlighting marginalized scientists and by focusing on how queer and Indigenous values change knowledge production in science. Overall, the panel was a somber discussion on the difficulties inherent in communicating the diversity of science and humanity to broad populations. It gave me topics to discuss with family and friends and direction for how to advocate for underrepresented groups in science.