BOSC 2023 Panel: Open and Ethical Data Sharing
As a conference that promotes open source and open science, we are big proponents of open data. We love to hear about tools and frameworks (such as FAIR) that promote data sharing and reuse. But sharing data openly also has its challenges: for example, how to securely share data that has personally identifiable health information, or how to ethically obtain and share data from marginalized communities. In this panel discussion, we will delve into some of these intriguing technical and ethical issues, with audience participation encouraged!
Sara El-Gebali (SciLifeLab-DataCentre-Sweden)
Sara El-Gebali is a Project Leader at SciLifeLab-Data Centre in Sweden, where she leads the implementation of technical solutions that facilitate data-driven research on a national scale. She is the founder of FAIRPoints, a community driven initiative highlighting pragmatic measures towards the implementing the FAIR (Findable, Accessible, Interoperable, Reusable) data principles. As a member of the steering committee for the FAIR Digital Objects forum, she advocates for inclusive and meaningful engagement practices, as well as the promotion of equitable technical solutions development. She is the founder of OpenCIDER (Open Computational Inclusion & Digital Equity Resource), a knowledge space that highlights communities and resources related to Open Data from a global perspective to ensure equitable and effective engagement from underrepresented groups.
Joseph M. Yracheta (Native BioData Consortium)
Joseph M. Yracheta is an Amerindigenous Scientist (P’urhepecha y Raramuri from Mexico) and Executive Director of the Native BioData Consortium within the Cheyenne River Lakota Nation (Sioux). Mr. Yracheta is passionately working to end Amerindigenous Health Disparity by the “wearing many research hats” of law, ethics, policy, genomics, omics, health outcomes, epidemiology, health care prevention/intervention and allostatic load from systemic racism. Mr. Yracheta believes that ALL data and resources must be seen as unforeseen futures, where their value will constantly change. He feels this data must be secured for Indigenous economic sustainability.
The Native BioData Consortium (NBDC) is the first 501(c)(3) nonprofit research institute that is led by Indigenous scientists and tribal community members in the United States. As a biorepository (or “biobank”), it works to ensure that advances in genetics, omics and health research benefit Native Americans and all Indigenous people.
Bastian Greshake Tzovaras (The Alan Turing Institute)
Bastian is currently working on the open source Citizen Science platform. He has a background in biology and a PhD in Bioinformatics from the University of Frankfurt, Germany. Prior to joining the Turing Institute, he was a research fellow at the French National Institute of Health and Medical Research in Paris where he led a research group on facilitating participatory medicine approaches. Bastian is an avid fan of Open (Source|Access|Science|Culture|.*) and thinks that everything is better if you add open in front of it. He co-founded openSNP – a crowdsourced/citizen science open data project that puts personal genetics data into the public domain – in 2011 and was the Director of Research for Open Humans, a non-profit that provides digital and social infrastructure around personal-data driven citizen science and self-research.
Verena Ras (University of Cape Town)
Verena Ras is the Training Coordinator at University of Cape Town for the Human Heredity and Health in Africa (H3Africa)’s H3ABioNet. She works closely with software development teams and international organizations to develop better training workflows and pipelines and to develop training models that overcome the challenges experienced by developing countries. H3ABioNet offers bioinformatics training all over Africa using various training modalities. Verena also chairs the Sample Collection and Processing Sub-committee of the African BioGenome Project, a coordinated pan-African effort to build capacity and infrastructure to generate, analyze and deploy genomics data for the improvement and sustainable use of biodiversity and agriculture across Africa. She manages the ethical sourcing and collection of species/tissue, following international best practises for specimen collection and processing for whole genome sequencing.
MODERATOR: Monica Munoz-Torres (University of Colorado Anschutz Medical Campus)
Monica is a Visiting Associate Professor at the University of Colorado. She leads the Standards Core in the BRIDGE Center project of the NIH Bridge to Artificial Intelligence (Bridge2AI) Program, and is the Program Director for the Phenomics First Resource, an NHGRI Center of Excellence in Genomic Science, and for the Monarch Initiative. Monica’s expertise, education, and enthusiasm span genomics, biocuration, knowledge representation, and data harmonization – and the development of software tools and standards to advance these fields. Her major motivations are to leverage the wealth of comparative genomics knowledge to advance our understanding of human health and disease with translational and integrative data science, and to continuously improve on socio-technological practices to build and coordinate research communities. In 2022 Monica was recognized as a Kavli Fellow by the National Academy of Sciences.