Consider the prompt: “Ancestry testing companies should have the right to sell customers’ genetic data to third parties.”
If you’re intrigued to have a conversation about this, find some friends, grab a coffee, and deal out a deck of Share Your Stance on Personal Genetics (SYS): a conversational card game developed by Personal Genetics Education & Dialogue (PGED).
We had the opportunity to interview representatives of the creative team behind PGED’s Share Your Stance on Personal Genetics (SYS), Dr. Marnie Gelbart, who is PGED’s Director of Programs, and Gill McNeil, PGED’s Education Design Lead. Both Marnie and Gill are deeply passionate about enabling conversation about genetics in the community, motivating the development of SYS. The mission at PGED embodies many of the core values of civic science, including helping people with diverse identities and beliefs explore personal genetics, so that they are better equipped to navigate personal and societal challenges and questions related to genetic technologies.
The Game: Deep dive into personal genetics
Personal genetics is an exploration of how genetics impacts people, families, and communities. It is a rapidly evolving topic at the intersection of science and society. To this end, PGED hosts a variety of workshops and school programs where participants discuss and ask questions about personal genetics. Recently, PGED has developed a card game to provide a modality for conversations about genetics without requiring a “so-called expert” in the room. We asked McNeil and Gelbart, based on their experience, if there was a specific societal unmet need that prompted the development of the game.
Gill McNeil:
“Core to PGED’s mission is that we engage with people everywhere. We develop programs that spark discussion about genetic technologies and their societal impact in different settings: classrooms, libraries, museums, community centers, online, and more. Our team recognized that there was an unmet need for a resource, tool, or method for more casual engagement – something that a person could pick up and use on their own. Essentially, we wanted to create something that didn’t require PGED to facilitate the dialogue.”
We were curious how the experience of gamification could reach broader audiences or invite individuals from diverse backgrounds. In short, why a card game? McNeil describes,
“There’s an excitement and anticipation that’s built into the card flipping experience. I think that can make conversation-based games a little more fun. And, gamification of science topics can provide an on-ramp for folks who are not excited about or who feel excluded from conversations about science.”
Image Credit: PGED
SYS is designed to be played by anyone, anywhere – regardless of expertise or familiarity with topics in genetics. In this way, the mission of PGED aligns closely with civic science, as it seeks to combat exclusion by welcoming diverse public participation in science. PGED has found an incredibly engaging and creative way to do this through SYS.
The game asks players to dive deep into personal opinions regarding genetics, spanning 5 categories: human health, agriculture, privacy, environment, and ancestry. An example prompt asks to consider big ideas such as: “I would want to know if someone I was seriously dating had a strong predisposition for a genetic condition.” Then, the game challenges that opinion by asking, “What if you were the one with the genetic predisposition?” The goal is to share and challenge pre-existing perspectives in informal spaces, and for players to learn new ways that genetics impacts their lives. Ultimately, everyone has something to say about every question.
The Outcome: Bringing genetics to the community
To the core, PGED’s mission is to “Engage with people everywhere,” a theme that resonates with civic science practitioners. This mission is exemplified by the breadth of locations where SYS has been played. In a pilot of the game, over 160 participants spanning 24 different sites across the United States reported learning something new about how genetics impacts their lives, challenging pre-existing opinions on controversial topics. Player feedback highlighted the achievement of the game’s ultimate goal of sparking dialogue and engaging with differences of opinion, with testimonials from players stating, “It was one of the first times I was able to share my opinion on this matter,” and “I liked the ‘What Ifs’ because they helped bring new voices and perspectives into the conversation.”
With difficult topics in science, some individuals may feel excluded from conversation or that their voice is not as valuable as an expert’s. PGED strives to dismantle this notion and broaden how we think about “expertise” and who has it, designing initiatives to transform genetic conversation towards becoming more inclusive and community-centered rather than purely academic. With the rapid growth of genetic research and innovation, it is vital communities feel their voice matters and have a say in all aspects of personal genetics. This can help improve the equity of scientific research and ensure that research positively impacts the communities it was meant to serve. By applying this principle of Civic Science, PGED has helped ensure that the beneficial gifts that genetics can offer are more equitably distributed and valued to positively impact the communities they hope to serve.
Link to the card game: Share Your Stance on Personal Genetics
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A geneticist by training, Marnie was motivated by a personal experience with genetic testing to join PGED in 2011 as one of the team’s first hires. She believes conversation is a powerful catalyst for exchanging information, building mutual understanding, and supporting empowerment. Over the years, Marnie has worn many hats at PGED, including organizing Congressional briefings, engaging with faith community leaders, and advising prominent genetics institutions on their public engagement efforts. Her commitment to forging meaningful connections and fostering partnerships has been instrumental in expanding PGED’s reach and impact. Today, she oversees the team’s daily operations, leads grant-funded programs, and works with Ting to guide PGED’s strategic direction.
Gill is a genetics specialist and artist passionate about communicating creatively about science. She has practical experience in genetics research, learning design and instruction, and program development. At PGED, Gill creates resources and facilitates programs for educators and local communities about the scientific, social, and ethical dimensions of genetics. With a strong belief in the power of storytelling for science engagement, she collaborates with entertainment industry experts to create genetics learning resources for writers, producers, and directors. In addition to her design work and programming for educators, communities, and storytellers, Gill taps into her creative spirit to support PGED’s graphic design, website development, and digital communication needs.
This interview was conducted with Gill McNeil (left) and Dr. Marnie Gelbart (right) by Ayesha Lobo, the Associate Director of Communication and Outreach at CSC.
