Ethics in FAIR Data: Ethical and practical issues of data sharing and usage within and across disciplines (Remote Access Instructions)
Collaborative session notes:
- IG Data for Development
- IG Ethics and Social Aspects of Data
- IG Small Unmanned Aircraft Systems’ Data
- IG Health Data
- IG RDA/NISO Privacy Implications of Research Data Sets
Brief introduction describing the activities and scope of the group(s)
This session assemples multiple RDA Interest groups along the theme of exploring the ethics of sharing and using data. The groups include:
The Ethics and Social Aspects of Data (ESAD) IG was established in 2015 and focuses on ethical and social challenges of data archiving, sharing, and reuse. The group has been discussing the kinds/types of data that can be reused and under what circumstances, the work of institutional ethics bodies and boards, and areas of research and specific research aspects that create new challenges for data management. Discussions held in the ESAD IG span across many group activities at RDA, where each group contributes to ethical data sharing goals from their perspectives.
The Interest Group Data for Development was established in 2014 and focuses on data access to and usage of data from a variety of sources of relevance to development studies and for developing countries in general. Much of the collected data that is of relevance to developing countries are held by institutions and agencies that have not yet developed a data sharing culture and RDA activities aim at improve this situation.
The Health Data Interest Group (HD-IG), established in 2016, is focusing on the intricacies of Health Data, especially as it relates to privacy and security issues in Healthcare. While data sharing in health is of paramount importance for evidence based medicine, this data raises particular challenges due to the special protections given to health data. The group membership benefits from a wide range of expertise, including experts working at health care institutions on curation and sharing of data, as well as people with clinical expertise from hospitals and clinics. One of the recent activities of the group is the development of the RDA Adoption and Training Guide for Reproducible Data Service Workflows.
The Small Unmanned Aircraft Systems (sUAS) Data IG seeks to explore and publish some best practices as regards the handling of sUAS captured sensor and flight data. sUAS are rapidly becoming important tools for data capture across many Scientific domains, as well as within commercial industry. The collection and use of such data could be potentially sensitive and creates novel challenges that need to be addressed to ensure good ethical data practices. However, there are currently no industry-wide accepted best practices for sUAS sensor and flight data handling and management. The IG focuses on the creation of standards and applying best data stewardship practices as data.
The RDA/NISO Privacy Implications of Research Data Sets IG explores issues related to scientific research data sets that contains human subject information, as well as related datasets that have the potential to be combined in a way that can expose private information. The goal of the group is to develop a framework for how researchers and repositories should appropriately manage human-subject datasets, to develop a metadata set to describe the privacy-related aspects of research datasets, and to build awareness of the privacy implications of research data sharing. While privacy is related to the ethical, legal and data publishing issues surrounding data management of which privacy is a part, this working group is focused specifically on privacy-related concerns.
The RDA consists of various disciplines aiming to improve data access and sharing. Although different disciplines and domains encounter various specific challenges and obstacles, experience from previous plenaries indicate that many of the ethical and practical issues that occur are of a similar kind across disciplines. Developing policies, practices as well as technical implementations that encourage responsible data sharing is a common goal for various stakeholders including researchers, policy makers, and data sharing infrastructures. Although there is a rich discussion around tailoring data reuse conditions/restrictions to varying use cases such as the purpose of data consumption, possible vulnerabilities, or various types of consents, there is still a need for clear guidelines or roadmaps on how to achieve effective and responsible data sharing in practice.
The FAIR principles of data sharing aim to provide guiding principles that should shape methods, techniques and practices to improve human and machine discoverability and reusability of data resources. One of the main challenges with regard to the implementation of FAIR principles in practice that still requires further attention is how to identify and encode ethical concerns, ethical review standards and data reuse restrictions in a machine readable form as part of the metadata of the resulting research objects.
So far, a range of diverse activities with relation to the FAIR principles and ethical considerations have been conducted by different interest groups, but the experience of the different working groups with regard to these aspects has not been brought together across working groups yet. This session will thus discuss experiences from these various areas to explore how the knowledge exchange on practical and ethical issues may facilitate synergies across disciplines and working groups.
The objective of the joint working group session is to synchronize these efforts, define desired outputs, set a roadmap and explore the value of establishing a joint working group or task force.
The session will showcase presentations from each IG, and will then be dedicated to identifying specific goals for a joint working group that would work towards a roadmap.
Part 1: Exploring experiences to identify and capture ethical and practical issues related to data sharing and reuse.
- FAIR data guiding principles for data management include two relevant dimensions to capture ethical concerns and reusability limitations: namely reusability and accessibility. Reusability requires rich contextual information that will allow for reuse, whereas accessibility should describe the conditions governing access and reuse in a clear and transparent way. However, there are no specific recommendations to make ethics data FAIR. In this presentation we (Oya Beyan /Daniel Mietchen) will describe the current state of art regarding the representation of ethical concerns, consent types, and possible privacy and societal violations in a machine readable way as part of FAIR data sets.
- Complex ethical issues arise with regard to data access and sharing from developing countries. For instance, in Uganda the challenge is not only at the level of data sharing between multiple stakeholders (researcher participants, investigators and research institutions), but also there is an inherent unwillingness of registries and other custodians of public data to grant researchers access to data.
- With regard to sUAS data, a range of pertinent issues arise. In addition to the potential sensitive nature of such data, this also includes practical and ethical challenges for sUAS data in developing nations. This includes the question of how to ensure that accessing, sharing and getting credit for such data is as easy and low cost as possible (of particular significance for researchers in developing countries), and ensuring that sUAS data becomes easily available to others for reuse (in particular with regard to the value of making available and re-using such data for researchers and practitioners across the world, especially for researchers and practitioners from lower income countries). This is particularly important in light of the opportunities related to the use of such data for developing country governments, where such data might help fill knowledge gaps and address policy questions, which would otherwise not be possible.
- The use of health data faces various challenges with regard to its sharing and re-use due to having individuals as the data object, and resulting privacy concerns. However, there is an urgent need to reuse healthcare data to increase to knowledge base in healthcare. National legislation and regulation as well as the scope and type of consent determine the scope and extent of what secondary uses of health data are allowable. This presentation will explore current practices in hospital data curation centers and regulatory perspective in US ( Mary Uhlmansiek / Anthony Juehne) and challenges with regard to various consent types (Ludovica Durst).
Part 2: Working meeting towards a cross disciplinary framework for ethical issues of data reuse. This time will be used to develop the next steps including:
- Clearly defining the problem we aim to solve
- Articulating the outcome(s) of interest
- Developing a project plan
Additional links to informative material related to the participating groups
Ethics and Social Aspects of Data IG https://www.rd-alliance.org/groups/ethics-and-social-aspects-data.html
Health Data IG - RDA Adoption and Training Guide for Reproducible Data Service Workflows
Data for Developmen IG https://www.rd-alliance.org/presentations-10th-plenary
The audience will be the RDA members who would like to define and incorporate ethical and consent constraints and wider considerations into their work with the FAIR data sharing principles.
Group chair serving as contact person: Ingvill Constanze Mochmann
Type of meeting: Working meeting
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