20 papers · ranked by Valyu relevance
Susan Bull, Michael Parker, Susan Bull, Phaik Yeong Cheah + 10 more
Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in…
Naomi Cahill, Christy Duke, Kevin English, Katie Pierce Farrier + 7 more
'Cason D Schmit' 'Meghan Curry O’Connell' 'Sarah Shewbrooks' 'Charles Abourezk' 'Fallon J Cochlin' 'Megan Doerr' 'Hye-Chung Kum'] Tribal governments and Tribal Epidemiology Centers face persistent challenges in obtaining the public health data that are essential to accomplishing their legal and ethical duties to…
Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann + 5 more
'Julian Cockbain' 'Michele Loi' 'Nana C. H. Kongsholm' 'Silvia Zullo' 'Vojin Rakic'] Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to…
Maryam Ghasemian, Lynette Hammond Gerido, Erman Ayday
As genomic research continues to advance, sharing of genomic data and research outcomes has become increasingly important for fostering collaboration and accelerating scientific discovery. However, such data sharing must be balanced with the need to protect the privacy of individuals whose genetic information is being…
Susan Bull, Michael Parker, Michael Parker, Susan Bull
It is increasingly recognized that effective and appropriate data sharing requires the development of models of good data-sharing practice capable of taking seriously both the potential benefits to be gained and the importance of ensuring that the rights and interests of participants are respected and that risk of…
Manuel Corpas, Charlotte Whicher, Nadezda V. Kovalevskaya, Tom Byers + 3 more
Delivery of the promise of precision medicine relies heavily on human genomic data sharing. Sharing genome data generated through publicly funded projects maximises return on investment from taxpayer funds and increases the likelihood of obtaining funding in future rounds . More importantly, genome data sharing makes…
Robert L. Grossman, Maryellen L. Giger, Julie Ann Johnson, Jeremy D. Marks + 3 more
'Jeremy D. Marks' 'Jessica P. Ridgway' 'Julian Solway' 'Walter M. Stadler'] Academic medical centers are generating an increasing amount of biomedical data and there is an increasing demand for biomedical data for research purposes by research projects, research consortia, companies, and other third parties. At the…
Francis McKay, Bethany J. Williams, Graham Prestwich, Daljeet Bansal + 2 more
'Darren Treanor' 'Nina Hallowell'] Background It has been argued that ethics review committees-e.g., Research Ethics Committees, Institutional Review Boards, etc.- have weaknesses in reviewing big data and artificial intelligence research. For instance, they may, due to the novelty of the area, lack the relevant…
Mark Lawler, Tim Maughan
The collection, storage and use of genomic and clinical data from patients and healthy individuals is a key component of personalised medicine enterprises such as the Precision Medicine Initiative, the Cancer Moonshot and the 100,000 Genomes Project. In order to maximise the value of this data, it is important to embed…
Bastian Greshake Tzovaras, Kevin Arvai, Mairi Dulaney, Vero Estrada-Galiñanes + 7 more
Many aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This offers an unprecedented chance for fields of human subject research ranging from the social sciences to precision medicine. With this potential…
David Goedicke, Natalie Chyi, Alexandra Bremers, Stacey Li + 2 more
Public Authors: ['David Goedicke' 'Natalie Chyi' 'Alexandra Bremers' 'Stacey Li' 'James Grimmelmann' 'Wendy Ju'] Autonomous driving is a widely researched technology that is frequently tested on public roads. The data generated from these tests represent an essential competitive element for the respective companies…
Catherine Heeney, Shona M. Kerr
Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical…
Isabelle Rose I Alberto, Nicole Rose I Alberto, Arnab K Ghosh, Bhav Jain + 10 more
'Bhav Jain' 'Shruti Jayakumar' 'Nicole Martinez-Martin' 'Ned McCague' 'Dana Moukheiber' 'Lama Moukheiber' 'Mira Moukheiber' 'Sulaiman Moukheiber' 'Antonio Yaghy' 'Andrew Zhang' 'Leo Anthony Celi'] As the health-care industry emerges into a new era of digital health driven by cloud data storage, distributed computing…
Tsvetelina Hristova, Liam Magee, Emma Kearney
Data sharing partnerships are increasingly an imperative for research institutions and, at the same time, a challenge for established models of data governance and ethical research oversight. We analyse four cases of data partnership involving academic institutions and examine the role afforded to the research partner…
Rediet Abebe, Kehinde Aruleba, Abeba Birhane, Sara Kingsley + 3 more
'George Obaido' 'Sekou L. Remy' 'Swathi Sadagopan'] As machine learning and data science applications grow ever more prevalent, there is an increased focus on data sharing and open data initiatives, particularly in the context of the African continent. Many argue that data sharing can support research and policy design…
Authors not listed
The discoverability and reusability of data is critical for machine learning to drive new discovery in the chemical sciences, and the ‘FAIR Guiding Principles for scientific data management and stewardship’ provide a measurable set of guidelines that can be used to ensure the accessibility of reusable data. We…
Authors not listed
Raman spectroscopy is an increasingly powerful and fast-growing analytical technique across diverse disciplines, from materials science and chemistry to biology and medicine, thanks to advances in Raman instrumentation and greatly supported by the flourishing of chemometrics and artificial intelligence (AI). However…
Authors not listed
Machine learning holds significant promise for accelerating biomarker discovery in clinical proteomics, yet its real-world impact remains limited by widespread methodological pitfalls and unrealistic expectations. In this perspective, we critically examine the integration of machine learning into clinical proteomics…
Authors not listed
The first step in discovering novel medicines is identifying an initial hit against a biological target or organism, followed by extensive iterative processes to explore the structure-activity relationship and establish a lead compound. As a result, drug discovery laboratories tend to accumulate extensive collections…
Authors not listed
The nanosafety domain has seen significant advancements in data generation and sharing, yet challenges remain in ensuring data interoperability and reuse. This article focuses on developing a semantic interoperability framework for nanosafety data to maximize the FAIRness (Findability, Accessibility, Interoperability…