Posted By
Rachelle Hollander Senior Advisor of the Center for Engineering Ethics and Society Rtd.

Call for Vignettes: Ethics, Data, and International Research Collaboration

PostedFriday, October 20, 2017 at 9:35 AM

The International Research Collaborations Working Group (I-Group) of the National Academies’ Government-University-Industry Research Roundtable (GUIRR) is hosting “Data Matters: Ethics, Data and International Research Collaboration in a Changing World”, to be held March 14-16, 2018 in Washington, DC.

The I-Group is seeking input from the community in the form of case studies, research vignettes, or illustrative examples that will aid in identifying ethical issues in the collection, sharing, curation, access, and use of data in any of a variety of research and data collection contexts. If possible, inclusion of what agreements would mitigate risks and increase benefits related to data would be welcome.

Examples of issues include:

  • Developing common standards for what constitutes data and the ethical considerations for its collection, integrity, availability, and future use;
  • Protecting personal privacy in an era when the analysis of massive data sets may allow for identifying individuals even from putatively anonymous data;
  • Use of databases for other than their original intent in ways that may impinge on the rights of the initial providers of the data and/or may not comport with originally obtained consents;
  • Protection of electronically archived data from hackers and other unauthorized access, use, and/or editing;
  • Use of genetic/genomic or other databases for ethically problematic purposes;
  • Obtaining informed consent (e.g., from research subjects in pre-literate cultures, individuals under stress, or other vulnerable populations where human rights are not consistent with U.S. norms (e.g., women’s ability to give consent)
  • Resolving conflicts resulting from different cultural mores, laws and regulations regarding ethical principles and practices, particularly as related to data and research practices
  • Impacts on vulnerable populations actually or potentially resulting from data collection, sharing, aggregation, use, publication, etc.

This list illustrates the type of issues the workshop will examine. Having concrete examples of how these and related topics have been or could be dealt with will help focus the workshop discussions as well as aid in identifying specific ethical considerations relevant to the broad international research community.

GUIRR is seeking brief  (2-3 page) examples of the manner in which ethical considerations along these lines have been addressed in the past, have affected ongoing research programs, or would benefit from further deliberation and encourage consideration of ethical aspects in future research. These case studies may be used for discussion purposes, included in the published meeting report (with permission of the authors and attribution), and/or as illustrative examples in presentations during the workshop.

Although there are no strict requirements for the format of the submissions, it is expected that they will contain at a minimum:

  1. Brief scenario of the research type and setting
  2. Nature of the data under consideration and how it is/was to be managed
  3. Methodologic considerations regarding analytics and visualizations, particularly as relate to predictions and their downstream impacts
  4. Actual or potential ethical issues related to collecting, sharing, maintaining, and safeguarding the data over time.   

Interested parties are invited to provide a submission by 1 December 2017 to  Submissions selected for presentation at the workshop will be credited in the final report.

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