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Suggested Citation:"Appendix C: Guiding Questions for the Breakout Sessions." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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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:

  1. Brief introductions including who you are and why you are here
  2. 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
  3. 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.

Suggested Citation:"Appendix C: Guiding Questions for the Breakout Sessions." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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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?
Suggested Citation:"Appendix C: Guiding Questions for the Breakout Sessions." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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  • 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?
Suggested Citation:"Appendix C: Guiding Questions for the Breakout Sessions." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×

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Suggested Citation:"Appendix C: Guiding Questions for the Breakout Sessions." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Appendix C: Guiding Questions for the Breakout Sessions." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
Page80
Suggested Citation:"Appendix C: Guiding Questions for the Breakout Sessions." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
Page81
Suggested Citation:"Appendix C: Guiding Questions for the Breakout Sessions." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
Page82
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In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training.

International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated data—this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well.

A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domains—all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.

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