scholarly journals Ethical Challenges of Big Data in Public Health

2015 ◽  
Vol 25 (suppl_3) ◽  
Author(s):  
E Vayena
Author(s):  
Effy Vayena ◽  
Lawrence Madoff

“Big data,” which encompasses massive amounts of information from both within the health sector (such as electronic health records) and outside the health sector (social media, search queries, cell phone metadata, credit card expenditures), is increasingly envisioned as a rich source to inform public health research and practice. This chapter examines the enormous range of sources, the highly varied nature of these data, and the differing motivations for their collection, which together challenge the public health community in ethically mining and exploiting big data. Ethical challenges revolve around the blurring of three previously clearer boundaries: between personal health data and nonhealth data; between the private and the public sphere in the online world; and, finally, between the powers and responsibilities of state and nonstate actors in relation to big data. Considerations include the implications for privacy, control and sharing of data, fair distribution of benefits and burdens, civic empowerment, accountability, and digital disease detection.


2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
I Mircheva ◽  
M Mirchev

Abstract Background Ownership of patient information in the context of Big Data is a relatively new problem, apparently not yet fully understood. There are not enough publications on the subject. Since the topic is interdisciplinary, incorporating legal, ethical, medical and aspects of information and communication technologies, a slightly more sophisticated analysis of the issue is needed. Aim To determine how the medical academic community perceives the issue of ownership of patient information in the context of Big Data. Methods Literature search for full text publications, indexed in PubMed, Springer, ScienceDirect and Scopus identified only 27 appropriate articles authored by academicians and corresponding to three focus areas: problem (ownership); area (healthcare); context (Big Data). Three major aspects were studied: scientific area of publications, aspects and academicians' perception of ownership in the context of Big Data. Results Publications are in the period 2014 - 2019, 37% published in health and medical informatics journals, 30% in medicine and public health, 19% in law and ethics; 78% authored by American and British academicians, highly cited. The majority (63%) are in the area of scientific research - clinical studies, access and use of patient data for medical research, secondary use of medical data, ethical challenges to Big data in healthcare. The majority (70%) of the publications discuss ownership in ethical and legal aspects and 67% see ownership as a challenge mostly to medical research, access control, ethics, politics and business. Conclusions Ownership of medical data is seen first and foremost as a challenge. Addressing this challenge requires the combined efforts of politicians, lawyers, ethicists, computer and medical professionals, as well as academicians, sharing these efforts, experiences and suggestions. However, this issue is neglected in the scientific literature. Publishing may help in open debates and adequate policy solutions. Key messages Ownership of patient information in the context of Big Data is a problem that should not be marginalized but needs a comprehensive attitude, consideration and combined efforts from all stakeholders. Overcoming the challenge of ownership may help in improving healthcare services, medical and public health research and the health of the population as a whole.


2021 ◽  
Vol 35 (1) ◽  
pp. 25-27
Author(s):  
Constance L. Milton

The advancement of a healthcare discipline is reliant on the disciplines’ ability to produce rigorous scholarship activities and products. The healthcare disciplines, especially nursing, are facing ever-changing priorities as shortages loom and exhaustion permeates the climate. Empirical public health priorities during the pandemic have dominated professional healthcare literature and global health communications. This article shall offer ethical implications for the discipline of nursing as it seeks the advancement of scholarship. Topics include straight-thinking issues surrounding nursing and medicine national policy statements, the big data movement, and evolutionary return of competency-based nurse education.


2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
M Ienca

Abstract Big data trends in biomedical and public health research hold promise for improving prevention, enabling earlier diagnosis, optimizing resource allocation, and delivering more tailored treatments to patients with specific disease trajectories. At the same time, due to their methodological novelty, algorithmic complexity and reliance on data mining for knowledge generation, big data approaches raise ethical challenges. This talk presents an overview of the major ethical challenges associated with health-related big data research. These include demarcating the boundary between personal health data and non-health data, re-defining the notion of private information, sustaining trust in health data sharing, preventing data-driven discrimination and ensuring a fair distribution of benefits and burdens among all stakeholders. Case studies from dementia research and public mental health will be discussed to illustrate these challenges and provide an ethical assessment. Furthermore, this talk will provide an overview of the normative proposals that have been recently advanced to align health-related big data research with established regulatory frameworks such as data protection regulation, regulation on human subject research and ethics review. Based on this analysis, suggestions will be made on how to maximise the benefits of big data for public health while minimizing ethical risks.


2015 ◽  
Vol 11 (2) ◽  
pp. e1003904 ◽  
Author(s):  
Effy Vayena ◽  
Marcel Salathé ◽  
Lawrence C. Madoff ◽  
John S. Brownstein

Author(s):  
Maxwell Smith ◽  
Ross Upshur

Infectious disease pandemics raise significant and novel ethical challenges to the organization and practice of public health. This chapter provides an overview of the salient ethical issues involved in preparing for and responding to pandemic disease, including those arising from deploying restrictive public health measures to contain and curb the spread of disease (e.g., isolation and quarantine), setting priorities for the allocation of scarce resources, health care workers’ duty to care in the face of heightened risk of infection, conducting research during pandemics, and the global governance of preventing and responding to pandemic disease. It also outlines ethical guidance from prominent ethical frameworks that have been developed to address these ethical issues and concludes by discussing some pressing challenges that must be addressed if ethical reflection is to make a meaningful difference in pandemic preparedness and response.


Author(s):  
Adnan A. Hyder

This chapter briefly introduces ethics issues in injury prevention and control in low- and middle-income countries (LMICs), using a series of examples that prompt attention to the ethical principles of autonomy and justice. The chapter also introduces the section of The Oxford Handbook of Public Health Ethics dedicated to an examination of injury and public health ethics, with attention given to the complex ethical challenges arising in injury prevention and control in LMICs. The section’s two chapters discuss public health ethics issues arising in the prevention and control of unintentional injuries and intentional injuries, respectively. Those chapters define a set of ethics issues within international injury work and provide an initial analysis of the nature of those ethics issues, their specificity, and potential pathways for addressing them.


Author(s):  
Jessica Fanzo

A major challenge for society today is how to secure and provide plentiful, healthy, and nutritious food for all in an environmentally sustainable and safe manner, while also addressing the multiple burdens of undernutrition, overweight and obesity, stunting and wasting, and micronutrient deficiencies, particularly for the most vulnerable. There are considerable ethical questions and trade-offs that arise when attempting to address this challenge, centered around integrating nutrition into the food security paradigm. This chapter attempts to highlight three key ethical challenges: the prioritization of key actions to address the multiple burdens of malnutrition, intergenerational justice issues of nutrition-impacted epigenetics, and the consequences of people’s diet choices, not only for humanity but also for the planet.


Author(s):  
Alessandro Blasimme ◽  
Effy Vayena

This chapter explores ethical issues raised by the use of artificial intelligence (AI) in the domain of biomedical research, healthcare provision, and public health. The litany of ethical challenges that AI in medicine raises cannot be addressed sufficiently by current regulatory and ethical frameworks. The chapter then advances the systemic oversight approach as a governance blueprint, which is based on six principles offering guidance as to the desirable features of oversight structures and processes in the domain of data-intense biomedicine: adaptivity, flexibility, inclusiveness, reflexivity, responsiveness, and monitoring (AFIRRM). In the research domain, ethical review committees will have to incorporate reflexive assessment of the scientific and social merits of AI-driven research and, as a consequence, will have to open their ranks to new professional figures such as social scientists. In the domain of patient care, clinical validation is a crucial issue. Hospitals could equip themselves with “clinical AI oversight bodies” charged with the task of advising clinical administrators. Meanwhile, in the public health sphere, the new level of granularity enabled by AI in disease surveillance or health promotion will have to be negotiated at the level of targeted communities.


Sign in / Sign up

Export Citation Format

Share Document