Gene Editing: Exploring Ethical Challenges
InstructionsGene Editing: Exploring Ethical Challenges
For trainers: Before using this module trainers should complete the two ENERI e-learning modules on Gene Editing: Gene Editing: Ethics Issues and Gene Editing: Technology Basics
For trainees: No prior expertise in gene editing is required, but participants should have a basic understanding of research ethics concepts. Participants are encouraged to complete the ENERI e-learning module on Research Ethics And Integrity Basics
Practical Tips
- Familiarize yourself with the irecs materials on gene editing and identify where are the videos and cases you will use for this session
- Test all digital tools (Mentimeter, digital whiteboards) in advance.
- Be aware of the diverse cultural and regulatory backgrounds of the trainees in your group.
- Share additional resources and the rest of e-modules at the end of the session.
- Collect feedback through the evaluation form to improve future sessions.
Welcome (10-15 minutes) & introduction of the session program and objectives
Introduce yourself and share the plan for the session presented below:
- Ice-breaker
- Short introductory lecture
- Case discussion in smaller groups
- Plenary discussion
- Weigh the potential harms and benefits of different areas of gene editing.
- Reflect upon some of the ethics issues (like dual use/misuse or long-term ethical and societal implications) associated with gene editing.
- Recognize ethical and safety concerns associated with gene editing techniques and their applications.
- What’s one word that comes to mind when you think of gene editing?
- What's one aspect of gene editing that makes you feel excited or uneasy?
Gene editing is a transformative and evolving technology that has a big potential for addressing problems in healthcare, agriculture, among others. However, it also raises critical ethical questions since it can have severe societal and environmental long-term consequences. Since the CRISPR-Cas9 became a reality, many debates about human enhancement and justice issues regarding access to the technology have surrounded gene editing.
This training session is designed to equip participants with the knowledge and tools to navigate the complex ethical issues that arise from gene editing. By exploring and discussing real cases, participants will develop a deeper understanding of the challenges and responsibilities associated to gene editing.
Trainer Tip: Use this moment to create a welcoming and open environment, emphasizing that the session wants to encourage ethical reflection in an open and safe space.
Ice breaker (10 minutes)
The aim of this activity is to invite participants to reflect on their expectations. This is useful both for trainers and participants.
Trainers can pick between two possible activities:
OPTION 1:
Mind map activity → small group activity: in sub-groups participants create a mind map of their current knowledge on the topic.
The following steps can support trainers in organizing this activity:
- Divide participants into subgroups.
- Provide each group with a digital (or physical) board.
- Ask them to brainstorm and write down the words that come to mind when they think of "gene editing."
- Ask them to divide the terms into:
-Topics they want to learn more about.
-Topics they are already familiar with.
- After 6-7 minutes of discussion in sub-groups, ask all groups share their maps with the group. Together with the group select the most common unknown topics.
OPTION 2:
Learning goals with Mentimeter- Prepare and share a Mentimeter (or similar tool) with the following question: after this session I expect to be able to…
- Ask participants to submit two goals, project the results and discuss them with the group.
Warm up: Case presentation (15 minutes)
- Present the irecs video on the CRISPR-Cas9 case of Lulu and Nana. You can find it here: A Case Of Gene Editing In Human Embryos
- After the video, have a brief discussion by asking participants the following questions:
What are the main ethical issues in this case?
How do these issues relate to societal or regulatory concerns?
Interactive lecture (45 minutes)
Discuss core ethical concepts related to gene editing, applying the concepts to practical cases. To build your presentation you can use the content of the irecs modules, which will provide you with videos and examples. For more engagement, you can ask participants to select one of the following topics and focus on it in depth:
A) Gene editing in embryos→ key concepts: moral status of embryos, human enhancement, risk/benefit, autonomy and beneficence. Resources:
- Matching exercise on gene editing in human embryos and its associated ethical issues: Germline Gene Editing.
- Explanation of germline gene editing: Germline Gene Editing.
- Explanation of gene editing in human embryos: Gene Editing And Human Embryos
B) Gene editing justice and equality→ key concepts: risk/benefits ratio, costs/benefits of gene therapy, patents gains, global considerations, medical need vs. human enhancement, socioeconomic inequalities, inclusion and stigma of people with disabilities.
- Introduction to gene editing and equality issues: Gene Editing, Justice, And Equality
- Potential benefits and risks of gene editing in terms of justice and equality: Gene Editing, Justice, And Equality cont.
- Benefits and financial gains of CRISPR-Cas9: Who Profits Financially From CRISPR-Cas9?
- Introduction to gene editing misuses and dual use: Gene Editing, Misuse, And Dual Use
- Environmental impacts of gene editing: Ethical Challenges For Non-Human Gene Editing
- Overview of the challenges related to agriculture and food safety of gene editing: Food Safety
- Gene editing in animals overview and some ethics issues: Gene Editing In Animals and Gene Editing In Animals cont.
Trainer Tip: Use questions to keep the lecture dynamic and engaging. Consider takinga break at this point.
Case discussion in subgroups (45 minutes)
Introduce a case. The case must be related to the concepts selected and presented during the interactive lecture. Therefore, if only one of the topics was covered, the case should be related to that topic.
Below, some case examples are presented. Note that justice issues appear in both cases:
- Case related to topic A&B: The ISSCR suggests that studies proposing to grow human embryos beyond two weeks should be considered on a case-by-case basis. Imagine that you are a member of a committee that has been asked to approve a study that involves gene editing of embryos that will be grown for 28 days. How would you go about this, and what sort of things might you include in your deliberations? Would you approve this study? (case extracted from: Reflection Activity)
- Case related to topic C&B: Imagine you are on an ethics committee reviewing a research proposal to produce genetically modified mosquitoes to combat malaria. This would releasing gene-edited organisms into a natural ecosystem in Sub-Saharan countries mostly. As an ethics expert, what criteria would you use to assess this proposal? How would you balance the potential health benefits with ethical concerns around environmental impact, dual-use, etc.? (case extracted from: A case of non-human gene editing)
- Present the case (10 minutes). In case you need more information, you can retrieve it from the ENERI modules. Take into account the amount of time you have for this exercise. It is advised to project slide with the case, so participants can look at it during the group discussion.
- Divide participants into subgroups (4-5 members). You can provide each group with a white board/digital board.
- Provide participants with the following instructions for the subgroup discussion:
a. Read the case carefully and reflect on it individually (10 minutes). Ask yourself: What is important to you, and what would you do if you were part of the REC member evaluating this research proposal? What aspects would you focus on in the ethical evaluation of that research proposal?
b. In dialogue with your group mates (10 minutes) try to identify: research gains, potential risks, connection of the case to the concepts that were discussed in the interactive lecture, other key ethical tensions.
c. Share individual views and try to reach a consensus among the group members (if possible) (10 minutes): would you approve the research proposal, why? What would be needed for approving it? Under which circumstances would you approve it (if any)?
Group presentations and plenary discussion (30-40 minutes)
- Ask each group to present their analysis (5 minutes per group, depending on the number of groups).
- Facilitate a plenary discussion to connect insights to real-world practices. Ask participants about their own experiences, (e.g. related real life examples they want to share them with the group).
- To prompt the discussion you can make use of the following questions:
How did you experience the exercise?
Did your view change?
Do you see any similarities in real life experiences?
Were you surprised by any particular point that was raised during the discussions?
Concluding session (10-20 minutes)
- Return to the icebreaker activity or learning goals (mind mapping or Mentimeter results) and ask participants if their expectations were met.
- Share a QR code linking to the evaluation form and online modules for continued learning.
- Thank participants for their contributions and encourage them to apply their insights in their work and spread the word about the irecs modules.
