scholarly journals Ethical Issues Arising Due to Bias in Training A.I. Algorithms in Healthcare and Data Sharing as a Potential Solution

2020 ◽  
Vol 1 (1) ◽  
pp. 1-9
Author(s):  
Bilwaj Gaonkar ◽  
Kirstin Kim ◽  
Luke Macyszyn
Keyword(s):  
Data Sharing ◽  
Ethical Issues ◽  
Potential Solution

scholarly journals Lessons from the past: A window on the future

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Alan Katz ◽  
Marni Brownell ◽  
Mark Smith
Keyword(s):  
Data Sharing ◽  
Linked Data ◽  
Ethical Issues ◽  
Interdisciplinary Collaboration ◽  
Critical Role ◽  
Relationship Building ◽  
Administrative Databases ◽  
Free Text ◽  
The Past ◽  
The Future

IntroductionThe Manitoba Centre for Health Policy has provided international leadership in organizing and accessing administrative databases, linking and analyzing data and translating the findings of research into policy for three decades. During this period, MCHP has addressed numerous challenges in each of these areas. Objectives and ApproachLinked data research is expanding rapidly in terms of access to new data sources, different types of data, sharing of data across jurisdictions, and advances in data analytics. Technical advances such as computing power and artificial intelligence support these developments while governance structures and ethical issues challenge them. This presentation will describe some of the challenges MCHP has met with a view to gaining insight into how solutions evolved and how experience can guide the future of linked data research. ResultsThe scaling up of linked data research will need to address specific challenges including de-identification of free text, accessing and linking data from private enterprise such as wearables, and interdisciplinary collaboration to incorporate new techniques developed by computer scientists. Cross-jurisdictional data analysis presents challenges in addressing differences in data architecture. Inter-jurisdictional and international data sharing create ethical and governance challenges. Experience has demonstrated the critical role that relationship building plays in addressing each of these. These relationships are different depending on the partners. They are all based on the development of common use of language, understanding the motivation and concerns of each party, clearly articulating the benefits of the relationship and data use and attention to the cultural and political environment. Conclusion/ImplicationsLessons from the past can guide us in addressing challenges posed by the exciting opportunities available to us all. While many of these challenges will be solved with technical solutions, we should not overlook the importance of human relationships in building a culture of trust and collaboration as we move

scholarly journals A Scenario-Based Methodology for Analyzing the Ethical, Legal, and Social Issues in Genomic Data Sharing

2020 ◽  
Vol 15 (4) ◽  
pp. 355-364
Author(s):  
Rebekah McWhirter ◽  
Lisa Eckstein ◽  
Don Chalmers ◽  
Christine Critchley ◽  
Jane Nielsen ◽  
...  
Keyword(s):  
Data Sharing ◽  
Ethical Issues ◽  
Social Issues ◽  
Genomic Data ◽  
Community Members ◽  
Direct To Consumer ◽  
Public Sharing ◽  
Key Issues ◽  
Consumer Test ◽  
Legal And Ethical Issues

Sharing of genomic and associated data is essential to clinical practice and biomedical research, and is increasingly encouraged by journals and funding bodies. Grappling with the range of legal and ethical issues raised by genomic data sharing presents a significant challenge, given the diversity of practices: from defined sharing of individual patient data, to broad-scale public sharing of research data, to uploading of direct-to-consumer test data by community members. Most commentary to date has discussed these issues in broad terms, but the debate can only progress if we engage with more granularity, grounded in jurisdictional and contextual specifics. We developed an empirical approach, creating a set of prototypical scenarios that capture the diversity of current genomic data sharing practices, which allows legal and ethical analysis of key issues at a granular level. The specificity of this approach provides a strong foundation for developing useful and relevant regulatory recommendations.

Fairness and Ethics in Artificial Intelligence-Based Medical Imagining

2022 ◽  
pp. 71-85
Author(s):  
Satvik Tripathi ◽  
Thomas Heinrich Musiolik
Keyword(s):  
Artificial Intelligence ◽  
Machine Learning ◽  
Patient Care ◽  
Data Sharing ◽  
Ethical Issues ◽  
Medical Systems ◽  
Healthcare Facilities ◽  
The World ◽  
Potential Applications ◽  
Medical Imagining

Artificial intelligence has a huge array of current and potential applications in healthcare and medicine. Ethical issues arising due to algorithmic biases are one of the greatest challenges faced in the generalizability of AI models today. The authors address safety and regulatory barriers that impede data sharing in medicine as well as potential changes to existing techniques and frameworks that might allow ethical data sharing for machine learning. With these developments in view, they also present different algorithmic models that are being used to develop machine learning-based medical systems that will potentially evolve to be free of the sample, annotator, and temporal bias. These AI-based medical imaging models will then be completely implemented in healthcare facilities and institutions all around the world, even in the remotest areas, making diagnosis and patient care both cheaper and freely accessible.

Data Sharing from the Perspective of Faculty in Korea

Libri ◽  
2017 ◽  
Vol 67 (3) ◽  
Author(s):  
Jihyun Kim
Keyword(s):  
Data Sharing ◽  
Ethical Issues ◽  
Data Reuse ◽  
Easy Access ◽  
Data Citation ◽  
Share Data ◽  
Access To Data ◽  
Survey Responses ◽  
Policy Guidance ◽  
Dissemination Of Results

AbstractThis study investigated the factors associated with Korean professors’ intentions to openly share data. As Korea does not have an institutional or regulatory framework governing data sharing, understanding the motivations and/or concerns of a Korean faculty might not only provide policy guidance for data-sharing practices in Korea but also help academic libraries of this country develop data management services valuable for researchers. In particular, survey responses from 190 professors and follow-up interviews with eleven faculty members were analyzed and revealed that professors who were more willing to openly share data tended to agree with data reuse conditioned on easy access to others’ data, to have altruistic reasons for data sharing and to be uncertain about repositories and the demand for their data. Professors who were less willing to make data publicly available tended to fear exploitation and to be interested in exchanging data for control of access to such data, for approval of the dissemination of results based on such data, and for co-authorship and collaboration opportunities. The study suggested that policies might be designed to incentivize data sharing by including supporting data citation, allowing data providers to control access to data, and considering ethical issues and various co-authorship practices. It also discussed implications of the findings for academic librarians.

scholarly journals Access and Management: Indigenous Perspectives on Genomic Data Sharing

2019 ◽  
Vol 29 (Supp) ◽  
pp. 659-668 ◽  
Author(s):  
Nanibaa' A. Garrison ◽  
Krysta S. Barton ◽  
Kathryn M. Porter ◽  
Thyvu Mai ◽  
Wylie Burke ◽  
...  
Keyword(s):  
Data Sharing ◽  
Alaska Native ◽  
Ethical Issues ◽  
Genetic Research ◽  
Genomic Data ◽  
Research Review ◽  
Research Approach ◽  
Structured Interviews ◽  
Indigenous Perspectives ◽  
Access To Data

As genomic researchers are encouraged to engage in broad genomic data shar­ing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a community-engaged research approach, we conducted 42 semi-structured interviews with tribal lead­ers, clinicians, researchers, policy makers, and tribal research review board members about their perspectives on ethical issues related to genetics in AI/AN/NH communi­ties. We report findings related to perspec­tives on genetic research, data sharing, and envisioning stronger oversight and manage­ment of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.Ethn Dis.2019;29(Suppl 3):659-668;doi:10.18865/ed.29.S3.659

Ethical considerations of using information obtained from online file sharing sites

2015 ◽  
Vol 13 (3/4) ◽  
pp. 256-267 ◽  
Author(s):  
Aimee van Wynsberghe ◽  
Jeroen van der Ham
Keyword(s):  
Data Sharing ◽  
Social Networking Sites ◽  
Ethical Issues ◽  
File Sharing ◽  
Life Cycles ◽  
Internet Security ◽  
Value Analysis ◽  
Content Type ◽  
Use Of Data ◽  
Novel Approach

Purpose – The purpose of this paper is to develop a novel approach for the ethical analysis of data collected from an online file-sharing site known as The PirateBay. Since the creation of Napster back in the late 1990s for the sharing and distribution of MP3 files across the Internet, the entertainment industry has struggled to deal with the regulation of information sharing at large. Added to the ethical questions of censorship and distributive justice are questions related to the use of data collected from such file-sharing sites for research purposes. Design/methodology/approach – The approach is based on previous work analysing the use of data from online social networking sites and involves value analysis of the collection of data throughout the data’s various life cycles. Findings – This paper highlights the difficulties faced when attempting to apply a deontological or utilitarian approach to cases like the one used here. With this in mind, the authors point to a virtue ethics approach as a way to address ethical issues related to data sharing in the face of ever-changing data gathering and sharing practices. Practical implications – This work is intended to provide a concrete approach for ethical data sharing practices in the domain of Internet security research. Originality/value – The approach presented in this paper is a novel approach combining the insights from: the embedded values concept, value-sensitive design and the approach of the embedded ethicist.

scholarly journals Mission impossible? Harmonising migration health data across countries

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
D Zenner
Keyword(s):  
Information Systems ◽  
Health Information ◽  
Data Sharing ◽  
Health Information Systems ◽  
Health Data ◽  
Potential Solution ◽  
International Borders ◽  
Health Related ◽  
The Eu

Abstract Despite significant efforts, for example within the EU/ EEA, there are currently only few Health information systems (HIS) which are standardized across international borders, and even within countries there can be significant variations. Modalities, technologies and terminologies differ. In the field of migration health, challenges and variations can be more significant. This talk will explore the specific challenges in migration health related HIS, provide an overview of the current HIS landscape pertaining to migration health and sketch out some potential solution to achieve greater harmonization and data sharing across countries.

scholarly journals Sharing health research data – the role of funders in improving the impact

F1000Research ◽  
2018 ◽  
Vol 7 ◽  
pp. 1641 ◽  
Author(s):  
Robert F. Terry ◽  
Katherine Littler ◽  
Piero L. Olliaro
Keyword(s):  
Clinical Trials ◽  
Data Sharing ◽  
Ethical Issues ◽  
Good Practice ◽  
Research Data ◽  
Subsequent Publication ◽  
Share Data ◽  
Registry Entry ◽  
The Impact

Recent public health emergencies with outbreaks of influenza, Ebola and Zika revealed that the mechanisms for sharing research data are neither being used, or adequate for the purpose, particularly where data needs to be shared rapidly. A review of research papers, including completed clinical trials related to priority pathogens, found only 31% (98 out of 319 published papers, excluding case studies) provided access to all the data underlying the paper - 65% of these papers give no information on how to find or access the data. Only two clinical trials out of 58 on interventions for WHO priority pathogens provided any link in their registry entry to the background data. Interviews with researchers revealed a reluctance to share data included a lack of confidence in the utility of the data; an absence of academic-incentives for rapid dissemination that prevents subsequent publication and a disconnect between those who are collecting the data and those who wish to use it quickly.  The role of the funders of research needs to change to address this. Funders need to engage early with the researchers and related stakeholders to understand their concerns and work harder to define the more explicitly the benefits to all stakeholders.  Secondly, there needs to be a direct benefit to sharing data that is directly relevant to those people that collect and curate the data. Thirdly more work needs to be done to realise the intent of making data sharing resources more equitable, ethical and efficient.  Finally, a checklist of the issues that need to be addressed when designing new or revising existing data sharing resources should be created. This checklist would highlight the technical, cultural and ethical issues that need to be considered and point to examples of emerging good practice that can be used to address them.

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