Biobanking: a group reflection on ethical issues - using an imaginary line
InstructionsBiobanking: a group reflection on ethical issues - using an imaginary line
For trainers: Before using this module trainers should complete the two ENERI e-learning modules on Biobanking: Biobanking: Technology Basics and Biobanking: Ethics Issues
For trainees: No prior expertise in biobanking 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
Before the session it is advised to:
- Familiarize yourself with the irecs materials on biobanking and identify where the videos and cases you will use for this session are.
- Test all needed digital tools (digital whiteboards, etc.) and think of materials (such as tape) needed for an (imaginary) line in the room in advance.
- Be aware of the diverse cultural and regulatory backgrounds of the trainees in your group.
After the activity it is advised to:
- 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.
Introduction (15 min)
Start the session by welcoming everyone and introducing yourself, followed by an overview of the learning objectives and training program.
Learning objectives
By taking part in this activity, participants work towards the following learning objectives and become:
1. knowledgeable on basic concepts associated with biobanking and ethical issues
2. able to indicate what ethical issues are pressing regarding biobanking
3. able to reflect upon some of the ethical issues associated with biobanking
Training program
- Mindmap on Biobanking
- Mini Lecture on Biobanking and Technology Basics
- Mini Lecture on Biobanking and Ethics Issues
- Reflection
- Statements
- Mindmap and closing
To warm up and engage participants, you can start with an ice-breaker question.
For example, you can use on of the scenarios below:
Scenario 1: Imagine you’re the owner of a biobank filled with all kinds of human samples. If there wouldn’t be any ethical or legal limitations – anything is possible; what is the first thing you would do?
Scenario 2: Imagine you are a world leader with immense power. What would be the first step you would take to enhance the ethical standards surrounding biobanking practices?
Mind map on Biobanking (15 min)
To assess trainees' current knowledge of ethical issues in biobanking practices, have them create a mind map. This can be done individually, in pairs, or in larger subgroups.
Assignment: Write biobanking and ethical issues in the middle of a piece of paper and spend 5 minutes writing down associated words that come to mind. Use keywords to label overarching concepts and draw connecting lines to illustrate relations.
Discuss in plenary the content of the mind maps. You can initiate a conversation among participants by asking: What surprises you if you look at other mind maps? Does anything you see raise questions for you?
Trainer tip: Encourage trainees to add words to the mind map during the training session.
Mini Lecture on Biobanking and Technology Basics (20 min)
Discuss the main concepts related to biobanking. To build your presentation you can use the content of the irecs modules, which will provide you with videos and examples, and integrate those in a few PowerPoint slides.
Below are two slides on "Biobanking" and "Sharing of Biological Samples and Data" that can serve as examples.
Slide 1: Biobanking
- What is a biobank? – To engage the audience you can invite one of the trainees to share what they think a biobank is. Explain key concepts such as human biobanks, biological samples, health-related data, autonomy and dignity of donors and their fundamental rights. Resources for information about those concepts: What Is A Biobank?
- Types of biobanks and their uses
Explain key concepts such as population based, disease specific and virtual biobanks. Resources for information about those concepts: Types Of Biobanks And Their Uses - Types of biological samples
Explain key concepts such as: blood, tissues, saliva, DNA, RNA, urine, CFS, cell lines, plasma and serum and fecal samples. Resources for information about those concepts: Types Of Biological Samples
Slide 2: Sharing Of Biological Samples and Data
Additional notes to slide 2: Background information about this topic can be found in the irecs e-module Sharing of Biological Samples & Data. To interact on this topic with the trainees, the quiz from the e-module can be completed in plenary. Below you will find the questions from the quiz. The quiz can be done digitally or in the lecture room, where trainees can indicate their answers by raising their hands.
Before you show the right answer, you can stimulate the conversation by asking open questions: Can you tell me more about your choice? Or: No one answered option (A/B/C/D), could you explain why you didn’t choose that option?
Quiz Questions
(Retrieved from Sharing of Biological Samples & Data)
1. What is a primary consideration when sharing biological samples between biobanks?
A. Biobank location
B. Sample quantity
C. Sample age
D. Regulatory compliance
2. Why is data harmonisation important when sharing data between biobanks? Select all that apply.
A. Speed of data transfer
B. Exclusive ownership rights
C. Data encryption methods
D. Harmonisation of consent processes
3. What is a key ethical and legal consideration when sharing data internationally between biobanks?
A. To economise on the costs of data sharing
B. To enable the seamless integration and analysis of datasets from diverse sources
C. To ensure that information collected follows standardised formats
D. To allow staff from different biobanks to develop good relations
Mini Lecture on Biobanking and Ethics Issues (20 min)
During this second mini lecture you can discuss the core ethical issues related to biobanking and 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. You can integrate those in a few PowerPoint slides:
- Slide 1: Show a case on biobanking. For example: The Ebola Outbreak in Sierra Leone. Before watching the video, encourage trainees to pay attention to ethical concerns.
- Slide 2: Stimulate trainees to share ethical concerns regarding biobanking. You can use one of these guiding questions: What ethical concerns did you hear in the video? What did you hear about the informed consent process? What are the consequences of an incomplete consent in relation to biobanking? What did you hear about exploitation? What effect might exploitation have on the local population?
Collect the ethical issues that arise from the trainees on a (digital) whiteboard. Share suggestions and explanations of the ethical issues by using information from the irecs modules. For example: think of Consent Issues for Children, Personal Data Processing Issues or Dealing With Incidental Findings
Trainer tip: connect information you share during the mini lectures with the elements you have seen on the mind maps of the trainees to keep them involved.
Reflection (30 min)
Start a dialogue about trainees' personal experiences with biobanking as citizens, allowing them to reflect on ethical issues from a citizen's perspective.
Divide the group in subgroups and invite them to reflect for 10-15 minutes on the following questions (projected on a slide):
- What is your own experience with biobanking as a citizen?
- Have you ever donated blood cells or anything else?
- Do you know what they do with your samples and personal information?
- What would be important to you in terms of privacy, storage and use of data and material – if it was your saliva, urine or blood sample?
Summarize with a plenary wrap-up, inviting trainees to share the key points of their discussions. Building on the previous exercise, continue adding ethical issues to the digital board, including any new ones brought up during the wrap-up. You can ask the trainees: "What can you conclude based on the last issues we added to the mind map?"
Statements (30 min)
To continue reflection on ethical issues related to biobanking in more dept, encourage trainees to explore and discuss a few statements. This exercise will provide trainees insight in the complexity of the ethical challenges and the values which are at stake.
You can create an imaginary line in the room, numbered from one to ten, where ‘one’ represents complete disagreement and ‘ten’ signifies full agreement. As a trainer, you will read statements aloud and ask trainees to stand on the line based on how much they agree with each statement.
You can use the following statements:
- Researchers should inform participants about genetic findings that could affect their health.
- Participants should be re-contacted for consent if their samples are used for new research.
- The collection of digital DNA material through biobanking should be halted, as complete data security cannot be fully guaranteed.
Read the first statement aloud and invite trainees to take a position on the line. Once everyone has selected a position on the line you can encourage dialogue between trainees using the following questions: Could you explain why are you standing there? Could you ask an open question to someone who is standing at the opposite end of the line? What would you like to know from someone else’s perspective? What value is at stake for you? Is there anything that would move you to another side of the line?
Mind map (15 min)
Now that trainees have had time to reflect on the topic of biobanking you can go back to the mindmaps created at the beginning of this training session. Invite trainees to reflect on the mind maps by asking the following questions:
What do you miss? What would you add now?
Closing (15 min)
Hand out a post-it to each trainee and ask them to write down...
- ...the most important thing that they have learned.
- ...an action they can implement to pay more attention to ethical issues related to biobanking.
(If you started with check-in question Scenario 2 in Step 1 of this module, then you can ask trainees if they would change their answer.)
Depending on the group size and the time available, invite a few or all trainees to share their insights.
Evaluation
