Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop (2018)
Chapter: Appendix C: Guiding Questions for the Breakout Sessions
Appendix C
Guiding Questions for the Breakout Sessions
The breakout groups at this workshop provide an opportunity for you to get to know one another better and to work together. They also provide an opportunity for all meeting attendees to contribute to the work product of the meeting, which will be a long-form summary of the presentations and discussions during the workshop published by the National Academies Press. Our hope is that we will articulate useful and actionable approaches to taking ethics into account when forging international collaborative research agreements, and that the specific applications of ethical principles with respect to data will be clear and instructive even to those not expert in data science or management.
Outline for Sessions:
- Brief introductions including who you are and why you are here
- Review of two vignettes submitted in response to a call for accounts of real-life efforts and activities relevant to the meeting topic and short discussion
- A structured discussion, keeping in mind both the vignettes as well as your own knowledge/experience/views.
The questions below are examples of some you might address in your discussions. There are surely additional subjects and perspectives that can be included. Please share your knowledge, points of view, experiences, and concerns with your small group. We will remind you frequently that our discussions are framed in the context of ethics, data, and international collaborative research agreements. Each of these is a rich topic on its own, but the intersection is our focus for this meeting. Please also be aware that the time is short and everyone should have the opportunity to contribute.
Each group should identify one individual to take notes (without naming those speaking), and one individual to make a 10-minute report to the full workshop attendance following the second group discussion.
Breakout Session I
Topic 1: How to frame the discussions of ethical issues in international collaborative research agreements
- What are the groups and individuals likely to be affected by how the data are collected/handled/accessed/used?
- At what phase of a project will this assessment occur?
- Benefits?
- What benefits?
- To whom?
- Risks?
- What risks?
- To whom?
Topic 2: Framework
- What laws and regulations re ethics and data are most relevant to a given collaboration/agreement? (i.e., jurisdiction)
- To what extent are these local, national, regional, or international in scope?
- Do different groups/constituencies have different needs?
- What are the local attitudes, cultural positioning, and histories that are relevant to consider?
Breakout Session II
Topic 3: Action Plan
- What safeguards are or can be built into the collaborative research plan and agreements?
- Protections
- How to articulate the subjects and objects of the protections? (What to protect? Whom to protect?)
- Who to engage to make sure this is done right and will be sustainable? (e.g., lawyers, university officials, data security experts, archivists, etc.?)
- For how long should these protections apply and how can these protections be revised/adjusted over time if/when needed?
- Oversight
- Of what aspects and using what standards?
- By whom?
- Reporting to whom?
- What should happen if there is a change in ownership or control, a disagreement, or a breach?
- What training or other resources (e.g., on the Web or in publications) do individuals need in order to perform their roles competently in this process?
- How can a high level of collaboration and eventual buy-in be achieved?
- From whom is buy-in required?
Topic 4: Future Plans
- Development of guidelines and other materials
- Are there statements in the action plan that could be relevant to nearly all potential agreements and others that would be specific by region or substance of the agreement?
- Certification bodies
- Who should certify?
- Who should be certified?
- What should be certified?
- People or organizations?
- Skills and/or knowledge?
- Agreements?
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