February 5, 2018David Sittenfeld, Museum of Science
As we shared in an update to the Building with Biology project last fall, the Museum of Science received supplemental funding from NSF to create an additional forum that will allow informal science education institutions to engage their visitors about the societal and ethical dimensions of human gene editing technologies. A recently issued report from the National Academies of Science and Medicine highlights the ways that recent technological breakthroughs have raised challenging ethical considerations that are best considered through public deliberation: "The emergence of CRISPR/Cas9 as a research tool in the area of human genome editing has lent new urgency to calls for a broad public dialogue about these technologies and their applications. "The NAS report calls for “extensive and inclusive public participation….developing the necessary content and communicating it effectively….and improving public engagement."
The Building with Biology project has helped to develop the capacity for this kind of national public dialogue within the informal science education community. Over 200 institutions have participated in Building with Biology events that facilitated conversations between scientists and the public about the societal and ethical dimensions of synthetic biology, and approximately 40 institutions hosted Building with Biology forums on topics such as genetically modified mosquitoes or gene editing. Over 90% of scientists who participated in both the hands-on activities and the forum events stated that they "learned about the public's views and experiences related to synthetic biology." So we have some confidence that deliberative forum programs can be an effective method for scientists and members of the public to share views and perspectives about emerging socio-scientific issues.
Over the last six months, we've been very busy building a new forum program called "Editing Our Evolution: Rewriting the Human Genome." Educators at the Museum of Science have created, tested, and iteratively revised three discussion-based scenarios drawn from topics identified in the National Academies report: therapy vs. enhancement, equity and access, and personal editing vs. heritable editing (in other words, gene editing that would be passed down to subsequent generations), with input from scientific, social science, and policy experts and public participants of formative focus groups. Each scenario engages participants in thinking about and discussing a case study where they imagine the perspective of an individual who is affected by a genetic disease. Participants then make individual and group decisions about how they would act in these situations and what policies should be enacted about these difficult questions.
We've tested the materials extensively through formative evaluation at the Museum of Science, and now have passed them along to our colleagues at the New York Hall of Science, the North Carolina Museum of Life and Science, the Michigan Science Center, and the Oregon Museum of Science and Industry who will host their pilot forum programs this month. We'll make more revisions to the forum program based upon the findings of the evaluation data from their events, and then disseminate the materials to 24 institutions across the U.S. who were invited to apply for small stipends based upon prior experiences with hosting deliberative forum programs. The organizers from these institutions will each attend a training workshop in April to share perspectives and plan for their events, host a forum this summer, and participate in the project evaluation that will collect data about these programs from participating scientists and the forum hosts. We also hope to collect and analyze the responses from participants of these forum programs around the nation, so we can share what we learn about participants' views and opinions with members of the National Academies Committee and other scientists working in the field of human gene editing. As with all NISE Net materials, the "Editing Our Evolution: Rewriting the Human Genome” forum will be made available for anyone to download and use. Digital forum materials will be available on www.buildingwithbiology.org and www.nisenet.org in May 2018.
Congratulations to our 2018 Building with Biology pilot forum and host sites! If you are close to any of these host institutions, we encourage you to attend an “Editing Our Evolution” Forum near you, and participate in discussions with scientists and members of the public about this important societal topic. We're very excited that these Building with Biology project partners will facilitate these conversations in their communities, increasing the capacity of informal science education institutions as conveners of public dialogues.
Building with Biology 2018 “Editing Our Evolution” Forum Sites
This material is based upon work supported by the National Science Foundation under Grant Number DRL 1421179. Any opinions, findings, and conclusions expressed in this material are those of the authors and do not necessarily reflect the views of the National Science Foundation.