EOSC-LIFE WP4 TOOLBOX: Toolbox for sharing of sensitive data -- a concept description

Authors: Boiten, Jan-Willem, Ohmann, Christian, Adeniran, Ayodeji, Canham, Steve, Abadia, Monica Cano, Chassang, Gauthier, Chiusano, Maria Luisa, David, Romain, Fratelli, Maddalena, Gribbon, Phil, Holub, Petr, Ludwig, Rebecca, Mayrhofer, Michaela Th., Matei, Mihaela, Merchant, Arshiya, Panagiotopoulou, Maria, Pireddu, Luca, Pla, Alex Sanchez, Schlünder, Irene, Tsamis, George, Wagener, Harald

Subject Terms: Quantitative Biology - Other Quantitative Biology, Computer Science - Databases

Access URL: http://arxiv.org/abs/2207.14296

Sharing sensitive data in life sciences: an overview of centralized and federated approaches.

Authors: Rujano, Maria A¹, Boiten, Jan-Willem², Ohmann, Christian¹, Canham, Steve¹, Contrino, Sergio¹, David, Romain³, Ewbank, Jonathan³, Filippone, Claudia³, Connellan, Claire³, Custers, Ilse², Nuland, Rick van², Mayrhofer, Michaela Th⁴, Holub, Petr⁴, Álvarez, Eva García⁴, Bacry, Emmanuel⁵, Hughes, Nigel⁶, Freeberg, Mallory A⁷, Schaffhauser, Birgit⁸, Wagener, Harald⁹, Sánchez-Pla, Alex¹⁰

Source: Briefings in Bioinformatics; Jul2024, Vol. 25 Issue 4, p1-16, 16p

Quality Matters: A Global Discussion in Qatar

Authors: Salman, Ayat, Baber, Ronny, Hannigan, Linda, Habermann, Jens Karsten, Henderson, Marianne K., Mayrhofer, Michaela Th., Afifi, Nahla

Source: Biopreservation and biobanking. 17(6):487-490

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100098718649.0x000001&indx=1&recIds=ETOCvdc_100098718649.0x000001

Risk mapping for better governance in biobanking: the case of biobank.cy.

Authors: Akyüz, Kaya, Goisauf, Melanie, Martin, Gillian M., Mayrhofer, Michaela Th., Antoniou, Stella, Charalambidou, Georgia, Deltas, Constantinos, Malatras, Apostolos, Papagregoriou, Gregory, Stefanou, Charalambos, Voutounou, Mariel

Source: Frontiers in Genetics; 2024, p1-12, 12p

Subject Terms: NETWORK governance, QUALITATIVE research, STAKEHOLDER analysis

Post-identifiability in changing sociotechnological genomic data environments.

Authors: Akyüz, Kaya, Goisauf, Melanie, Chassang, Gauthier, Kozera, Łukasz, Mežinska, Signe, Tzortzatou-Nanopoulou, Olga, Mayrhofer, Michaela Th.

Source: BioSocieties; Jun2024, Vol. 19 Issue 2, p204-231, 28p

Subject Terms: HELA cells, BIG data, CELL lines, MEDICAL research, NEGOTIATION

Enhancing Reuse of Data and Biological Material in Medical Research: From FAIR to FAIR-Health

Authors: Holub, Petr, Kohlmayer, Florian, Prasser, Fabian, Mayrhofer, Michaela Th., Schlünder, Irene, Martin, Gillian M., Casati, Sara, Koumakis, Lefteris, Wutte, Andrea, Kozera, Łukasz, Strapagiel, Dominik, Anton, Gabriele, Zanetti, Gianluigi, Sezerman, Osman Ugur, Mendy, Maimuna, Valík, Dalibor, Lavitrano, Marialuisa, Dagher, Georges, Zatloukal, Kurt, van Ommen, GertJan B., Litton, Jan-Eric

Source: Biopreservation and biobanking. 16(2):97-105

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100084559119.0x000001&indx=1&recIds=ETOCvdc_100084559119.0x000001

Unlocking the potential of big data and AI in medicine: insights from biobanking.

Authors: Akyüz, Kaya, Cano Abadía, Mónica, Goisauf, Melanie, Mayrhofer, Michaela Th.

Source: Frontiers in Medicine; 2024, p1-6, 6p

About the New Significance and the Contingent Meaning of Biological Material and Data in Biobanks

Authors: Mayrhofer, Michaela Th.

Source: History and Philosophy of the Life Sciences, 2013 Jan 01. 35(3), 449-467.

Access URL: https://www.jstor.org/stable/43862195

Life course of retrospective harmonization initiatives: key elements to consider.

Authors: Fortier, Isabel, Wey, Tina W., Bergeron, Julie, Pinot de Moira, Angela, Nybo-Andersen, Anne-Marie, Bishop, Tom, Murtagh, Madeleine J., Miočević, Milica, Swertz, Morris A., van Enckevort, Esther, Marcon, Yannick, Mayrhofer, Michaela. Th., Ornelas, Jos Pedro, Sebert, Sylvain, Santos, Ana Cristina, Rocha, Artur, Wilson, Rebecca C., Griffith, Lauren E., Burton, Paul

Source: Journal of Developmental Origins of Health & Disease; Apr2023, Vol. 14 Issue 2, p190-198, 9p

Subject Terms: DATA harmonization, STATISTICAL power analysis, DATA replication, COHORT analysis, PANEL analysis

Being a member of the club: the transnational (self-)governance of networks of biobanks

Authors: Mayrhofer, Michaela Th., Prainsack, Barbara

Source: International journal of risk assessment and management. 12(1):64-81

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100079375120.0x000001&indx=1&recIds=ETOCvdc_100079375120.0x000001

Expanding the BBMRI-ERIC Directory into a Global Catalogue of COVID-19–Ready Collections: A Joint Initiative of BBMRI-ERIC and ISBER

Authors: Catchpoole, Daniel R., Florindi, Francesco, Ahern, Caitlin, Garcia, Debra Leiolani, Mullins, Piper, Van Enckevort, Esther, Zaayenga, Andy, Mayrhofer, Michaela Th., Holub, Petr

Source: Biopreservation and biobanking. 18(5):479-480

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100150485563.0x000001&indx=1&recIds=ETOCvdc_100150485563.0x000001

An iterative and interdisciplinary categorisation process towards FAIRer digital resources for sensitive life-sciences data.

Authors: David, Romain, Ohmann, Christian, Boiten, Jan-Willem, Abadía, Mónica Cano, Bietrix, Florence, Canham, Steve, Chiusano, Maria Luisa, Dastrù, Walter, Laroquette, Arnaud, Longo, Dario, Mayrhofer, Michaela Th., Panagiotopoulou, Maria, Richard, Audrey S., Goryanin, Sergey, Verde, Pablo Emilio

Source: Scientific Reports; 12/5/2022, Vol. 12 Issue 1, p1-11, 11p

Subject Terms: LIFE sciences, COMMUNITIES, SOFTWARE development tools

Qatar Biobank Milestones in Building a Successful Biobank

Authors: Salman, Ayat, Baber, Ronny, Hannigan, Linda, Habermann, Jens Karsten, Henderson, Marianne K., Mayrhofer, Michaela Th., Afifi, Nahla

Source: Biopreservation and biobanking. 17(6):485-486

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100098718644.0x000001&indx=1&recIds=ETOCvdc_100098718644.0x000001

You Can't Have AI Both Ways: Balancing Health Data Privacy and Access Fairly.

Authors: Bak, Marieke, Madai, Vince Istvan, Fritzsche, Marie-Christine, Mayrhofer, Michaela Th., McLennan, Stuart

Source: Frontiers in Genetics; 6/13/2022, Vol. 13, p1-7, 7p

Subject Terms: ARTIFICIAL intelligence, NETWORK governance, PRIVACY, DATA privacy

Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance.

Authors: Akyüz, Kaya, Chassang, Gauthier, Goisauf, Melanie, Kozera, Łukasz, Mezinska, Signe, Tzortzatou, Olga, Mayrhofer, Michaela Th.

Source: Life Sciences, Society & Policy; 12/13/2021, Vol. 17 Issue 1, p1-28, 28p

Subject Terms: RISK assessment, SCIENTIFIC literature, SCIENTIFIC community, LEGAL instruments, SUSTAINABILITY

The CORBEL matrix on informed consent in clinical studies: a multidisciplinary approach of Research Infrastructures Building Enduring Life-science Services.

Authors: Colombo, Cinzia, Mayrhofer, Michaela Th., Kubiak, Christine, Battaglia, Serena, Matei, Mihaela, Lavitrano, Marialuisa, Casati, Sara, Chico, Victoria, Schluender, Irene, Carapina, Tamara, Mosconi, Paola

Source: BMC Medical Ethics; 7/17/2021, Vol. 22 Issue 1, p1-15, 15p

Subject Terms: INTERDISCIPLINARY research, INFORMATION sharing, MEDICAL research

Geographic Terms: NICE (France)

Biomarker Research and Development for Coronavirus Disease 2019 (COVID-19): European Medical Research Infrastructures Call for Global Coordination.

Authors: Oldoni, Emanuela, Gool, Alain van, Bermejo, Laura García, Scherer, Andreas, Mayrhofer, Michaela Th, Florindi, Francesco, Demotes, Jacques, Kubiak, Christine, Fauvel, Anne-Charlotte, Bietrix, Florence, Ussi, Anton, Andreu, Antonio L

Source: Clinical Infectious Diseases; 5/15/2021, Vol. 72 Issue 10, p1838-1842, 5p

Subject Terms: BIOMARKERS, RESEARCH, WORLD health, CONCEPTUAL structures, INTERPROFESSIONAL relations, COVID-19 testing, COVID-19 pandemic

Geographic Terms: EUROPE

The sick as biological citizens? How patient-user organizations reconfigure the field of health and illness.

Alternate Title: Der Kranke als biologischer Bürger? Wie Patientenorganisationen die Kategorisierung zwischen Gesundheit und Krankheit neu formen.

Authors: Valenzuela, Hernán Cuevas¹ hcuevasster@gmail.com, Mayrhofer, Michaela Th.² michaela.mayrhofer@medunigraz.at

Source: ÖZP - Österreichische Zeitschrift für Politikwissenschaft. 2013, Vol. 42 Issue 3, p311-327. 17p.

Subject Terms: PATIENTS, BEDRIDDEN persons, SICK people, MEDICAL care, INPATIENT care, MEDICAL records

The sick as biological citizens? How patient-user organizations reconfigure the field of health and illness.

Alternate Title: Der Kranke als biologischer Bürger? Wie Patientenorganisationen die Kategorisierung zwischen Gesundheit und Krankheit neu formen.

Authors: Cuevas Valenzuela, Hernán¹ hcuevasster@gmail.com, Mayrhofer, Michaela Th.² michaela.mayrhofer@medunigraz.at

Source: ÖZP - Österreichische Zeitschrift für Politikwissenschaft. 2013, Vol. 42 Issue 3, p311-327. 17p.

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