Instruction:53544958-49af-437a-9e35-642103b36434

Instructions

Biobanking: a group reflection on ethical issues - using an imaginary line

Instructions for:TraineeTrainer

Goal

This short interactive workshop introduces some of the ethical challenges related to biobanking. Using statements, it aims to encourage reflection on ethical issues related to this technology among master students.

Session overview:

1. Welcome 10 min
2. Mindmap  on Biobanking 10 min
3. Mini Lecture on Biobanking and Technology Basics       15 min
4. Mini Lecture on Biobanking and Ethics Issues           15 min            
5. Reflection 15 min
6. Statements       25 min
7. Mindmap 15 min
8. Closing 15 min

Requirements

For trainers: complete the two eneri e-learning modules on Biobanking

•  

Biobanking: Technology Basics

Duration (hours)

2

For whom is this important?

Master students

Part of

irecs

Steps

Steps

1Welcome (10 min)

2Mind map on Biobanking (10 min)

3Mini Lecture on Biobanking and Technology Basics (15 min)

4Mini Lecture on Biobanking and Ethics Issues (15 min)

5Reflection (15 min)

6Statements (25 min)

7Mind map (15 min)

8Closing (15 min)

Practical Tips

• Familiarize yourself with the irecs materials on biobanking and identify where are the videos and cases you will use for this session
• 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.
• 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.

1

Welcome (10 min)

• Introduce yourself and, if you have sufficient time or a small group, the trainees.

• Start with an ice-breaker question.  
  For example:  
  Scenario 1: Imagine you’re the owner of a biobank filled with all kind 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?  
  

• Give an overview of the learning objectives and training program

2

Mind map on Biobanking (10 min)

To gain insight into the current knowledge of the trainees on ethical issues in biobanking practices, let them create a mind map. This can be done individually, in duos, 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.  
  

Discuss in plenary the words that are written on the mind maps. 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.

3

Mini Lecture on Biobanking and Technology Basics (15 min)

Discuss the main concepts related to biobanking as a technology. 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.  

Slide 1: Biobanking

Example Slide 1: Biobanking

• What Is A Biobank? Eneri – as the trainees complete this e-module, the trainer can also ask one of the trainees to explain in their own words what a biobank is.
  Key concepts: human biobanks, biological samples, health-related data,  autonomy and dignity of donors and their fundamental rights.

• Types Of Biobanks And Their Uses Eneri  
  Key concepts: population based, disease specific and virtual biobanks.

• Types Of Biological Samples Eneri
  Key concepts: blood, tissues, saliva, DNA, RNA, urine, CFS, cell lines, plasma and serum and fecal samples.

Slide 2: Sharing Of Biological Samples and Data

Background information about this topic can be found in the irecs e-module Sharing Of Biological Samples & Data Eneri. 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 the trainer shows the right answer, the trainer can stimulate the conversation by asking open questions:

Can you tell me more about your choice?

No one answered option (A/B/C/D), could you explain why you didn’t choose that option?  

Example slide 2: Sharing of biological samples and data

Quiz Questions

(Retrieved from Sharing Of Biological Samples & Data Eneri)

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 

4

Mini Lecture on Biobanking and Ethics Issues (15 min)

Discuss the core ethical issues related to biobanking, 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 and integrate those in a few PowerPoint slides:

• Slide 1: Show a case on biobanking. For example: The Ebola Outbreak in Sierra Leone

• Slide 2: Stimulate trainees to share ethical concerns regarding biobanking:

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 them on a (digital) whiteboard.  Share suggestions and explanations of the ethical issues by using information from the irecs modules. For example:
Consent issues (for children) Consent Issues for Children Eneri Personal data processing issues Personal Data Processing Issues Eneri Dealing with incidental findings Dealing With Incidental Findings Eneri

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.  

5

Reflection (15 min)

Start a dialogue about  trainees’ own experiences as a citizen with biobanking.

Suggestions to start the conversation (show the questions 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?

Close the dialogue, after 5 minutes, with a summary (from each group).  

6

Statements (25 min)

To encourage reflection on ethical issues related to biobanking, trainees will discuss a few statements in depth. The exercise will provide trainees insight in the complexity of the ethical issues and the values which are at stake.  

The trainer creates an imaginary line in the room numbered from one to ten. The trainer reads the first statement aloud and ask trainees to stand at a point on the line that represents their level of agreement. A ‘one’ means they completely disagree, while a ‘ten’ means they fully agree. The trainer encourages the dialogue between trainees to share their point of view: Could you explain why you are at that particular point? Could you ask an open question to someone who is standing at the opposite 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 an other side of the line?

Discuss the statements below:  

• 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.  

Perhaps one of the trainees has a statement to share as well.  

 

Other information

Who

• Master students