Program Areas – Responsible Innovation, Complex Socio-technical Systems
PGET Forum Materials
Background
The rapid development of human genome editing technologies has raised significant questions about these tools’ potential and proper applications and societal impacts; as well as broader practical and philosophical questions of authority, governance, and future-making around technological innovation in society. Expert bioethics and policy discourse about genome editing has exploded in the last five years. High-profile expert statements and major consensus reports from the German Ethics Council, the National Academies of Sciences, Engineering, and Medicine, and the Nuffield Council on Bioethics have stressed the importance of forward-looking policy development and deliberative public engagement to guide the future of human genome editing.
In response to this need, a team from Baylor College of Medicine, Arizona State University, and the Museum of Science Boston (MOS), supported by the National Institutes of Health, worked with citizens and expert stakeholders to understand the driving forces behind human genome editing (HGE) research. The team developed a series of public deliberations around the ethics and governance of genome editing, and plan to use those results to inform policy. You can learn more about the project here and here.
What you’ll find here
While developing these public deliberations, the team created materials that can have a life outside of the project – in classrooms, public engagement spaces, and beyond. What follows are links to each of the assets as well as some ideas for ways in which they could be used and an estimated time to expect to spend on each activity.
Drivers of Change Cards - 1–2 hours
These cards were developed to help the expert panel develop several possible versions of a future with human genome editing technologies. They allow a user to consider what effect if any each card will have on that future, and then ask the user to select 3 cards to address different questions. Interacting with these cards would best be followed with a conversation about the cards chosen by each participant, potentially with the goal of envisioning what they believe a plausible future with human genome editing may look like.
In thinking about change, it is valuable to account for a diverse array of variables, considering how they are related and how they might change over time. The Drivers of Change themes represented in this card deck feature major trends, uncertainties, and new possibilities that may influence the future of human genome editing. The cards are informed by the qualitative interviews conducted by the PGET research team and supplemented by a thoughtful appraisal of the academic literature. At the end of the deck, you will find references for our sources.
Download Digital Version
Download Printable Version with Card Backs
Possible Futures - 45–90 min
Critical to this anticipatory governance project was the development of four scenarios. Scenarios, or “possible futures” as they are referred to throughout the forum, are a tool for managing uncertainty. Rather than trying to predict what will happen, they try to describe a variety of things that could happen, organized into a few plausible, hypothetical future situations. Thinking about multiple possible futures in this way can reveal previously unseen trends, potential dangers and opportunities, relationships, and ways in which people and organizations can promote desirable outcomes and work against undesirable ones. It can also help people to make plans or build capabilities that will serve them well across a wide variety of possible futures, rather than only one version of the future. In thinking about change, it is valuable to account for a diverse array of variables, considering how they are related and how they might change over time. The Drivers of Change themes represented in this card deck feature major trends, uncertainties, and new possibilities that may influence the future of human genome editing. The cards are informed by the qualitative interviews conducted by the PGET research team and supplemented by a thoughtful appraisal of the academic literature. At the end of the deck, you will find references for our sources. Link to digital version Link to printable version with card backs
If using these visions of the future outside of the forum, we suggest reading each and then considering the following questions individually or in a group discussion:
- What would it be like for you to live in this future world?
- What opportunities, dangers, and consequences would you, your loved ones, and others face in this world?
- Would you, your loved ones, or others find this future desirable?
View Scenario Cards PDF
Background Information
In order to ensure public deliberation participants had the knowledge of human genome editing technologies necessary to participate fully in the discussion, they were provided with this 20 or so page document. It includes a brief history of human genome editing technologies, some of the relevant ethical implications, and information specific to the public deliberation including the four possible futures discussed in the last section and what to expect during the forum.
View the Background Information PDF
Background Video - 10 min
Developed for the public deliberations, this video condenses much of the information about Human Genome Editing technologies found in the background packet that the team felt would be necessary for a participant to be able to fully engage in meaningful discussions during the public deliberations.
Watch the video
Forum
The forum, or public deliberation, was originally developed as a means to collect public attitudes, hopes, and concerns around human genome editing technologies and its governance. In its entirety, the forum is designed to run 6 hours including a lunch and two breaks. It is also intended to be facilitated, meaning that each small group of 5 to 7 participants will have a trained facilitator to moderate the discussion. The full details on how to hold the forum in its original form, including event logistics and recruitment, are included in the Manual in the Full Forum download package.
We have some suggested cut down versions of the forum packaged below, but we also encourage you to get to know the materials and pick the sections that work for you. If you are choosing to use the character cards at any point, know that they build upon each other and so reading later parts without first reading earlier parts would present a challenge and may require some editing on your part.
One essential part to conducting these conversations in any form is using the “Discussion Guidelines” which create a social contract between participants and ensures disagreements can occur in a constructive manner.
Option A - 2 hours
| 10 minutes |
Welcome and Introduction |
| 17 minutes |
Part 1: Group Introductions |
| 43 minutes |
Part 2: Human Genome Editing |
| 10 minutes |
Break |
| 35 minutes |
Part 3: Possible Futures |
| 5 minutes |
Wrap Up
Thank participants again for their time |
In this version of the forum, participants consider human genome editing technologies and their use as considered from various perspectives. They also think about how one of the four possible futures would affect their opinions and the advantages and disadvantages of living in that future for themselves and for others.
View Option A Files
Option B - 2 hours and 40 minutes
| 10 minutes |
Welcome and Introduction |
| 17 minutes |
Part 1: Group Introductions |
| 43 minutes |
Part 2: Human Genome Editing |
| 10 minutes |
Break |
| 75 minutes |
Part 4: How Should We Make Decisions About HGE |
| 5 minutes |
Wrap Up
Thank participants again for their time |
In this version of the forum, participants consider human genome editing technologies and their use as considered from various perspectives. They also think about how they would want decisions around human genome editing technologies to be made. What guiding principles should be used around decision-making? Who should be allowed to develop the technologies? How should they be funded?
View Option B Files
Full Forum - 6 hours
| 10 minutes |
Welcome and Introduction |
| 40 minutes |
Part 1: Open Framing |
| 55 minutes |
Part 2: Human Genome Editing |
| 10 minutes |
Break |
| 45 minutes |
Part 3: Possible Futures |
| 15 minutes |
Share Out |
| 45 minutes |
Lunch |
| 5 minutes |
Welcome Back and overview of afternoon |
| 75 minutes |
Part 4: How Should We Make Decisions About HGE |
| 10 minutes |
Break |
| 30 minutes |
Part 5: Hopes and Concerns |
| 15 minutes |
Share Out |
| 10 minutes |
Wrap Up
Thank participants again for their time
Participants complete post-survey
Explain how distribution of stipends will work |
In the full forum, participants consider human genome editing technologies and their use as considered from various perspectives. They also think about how one of the four possible futures would affect their opinions and the advantages and disadvantages of living in that future for themselves and for others. In addition, they how they would want decisions around human genome editing technologies to be made. What guiding principles should be used around decision-making? Who should be allowed to develop the technologies? How should they be funded? Finally, they individually and as a group develop 3 hopes and concerns for the future of human genome editing technologies.
View Full Forum Materials