Frankie Stevens1, Jeff Christiansen2, Kate Le May3, Steve McEachern4, Angela Gackle5, Ingrid Mason1
2med.data.edu.au and QCIF, firstname.lastname@example.org
3Australian Research Data Commons, Canberra, Australia, email@example.com
Sensitive data are data relating to people, animal or plant species, data generated or used under a restrictive commercial research funding agreement, and data likely to have significant negative public and/or personal impact if released. Major, familiar categories of sensitive data are: data concerning human participants, data relating to species of plants or animals and commercially sensitive data. Most research institutions will have some form of sensitive data, yet there is no commonly adopted process, policy or storage architecture employed across institutions in Australia when it comes to sensitive data.
The legal framework around sensitive data in is complex and differs within and between nations. Different pieces of legislations regulate the collection, use, disclosure and handling of sensitive data, and there are also many ethical considerations around the management and sharing of sensitive data, in addition to funding body compliance elements on sensitive data. Together, these present a confusing landscape for researchers wanting to work collaboratively with sensitive data, keep it safe, make it FAIR, and perhaps enable its reusability.
This 60 Minute BoF will be facilitated by AARNet as a national provider of research data storage and data movement technologies. The BoF will feature a small number of guest speakers representing the broad perspective of sensitive data (medical, cultural, species,…), who will briefly (3-5 min) share with delegates what approaches and infrastructure they employ for their sensitive data needs to enable collaboration, security, FAIRness and reusability.
Participants in the BoF will be able to engage with live Q&As using Direct Poll to contribute to, and guide discussions within the BoF, all visible through live charts. Using this technology, the BoF will determine what the common challenges are when dealing with sensitive data, and what potential solutions might address these. The BoF will also present opportunities to guide a national strategic approach to the management of sensitive data.
The authors represent expertise in sensitive data that ranges from the Medical/Health disciplines, through to Cultural and Ecology perspectives.
Dr Frankie Stevens and Ingrid Mason currently hold roles with AARNet, the Australian Research and Education network, and have an extensive number of years of eResearch experience between them.
Jeff Christiansen of QCIF is an expert on the legislative considerations surrounding sensitive data, having authored the excellent discussion paper on the topic in Med.data.gov.au.
Kate LeMay is a Senior Research Data Specialist with the ARDC, and has a keen interest in sensitive data, particularly with respect to ethical considerations.
Steve McEachern is Director of the Australian Data Archive, which provides a national service for the collection and preservation of digital data relating to social, political and economic affairs.
Angela Gackle from TERN brings representation on the sensitivities of Ecological data, where threatened animal and plant species might be at risk