What are the Ethical Approaches Used by Experts When Sharing Health Data? - An Interview Study

Abstract Background: Health data driven activities have become central in diverse areas (research, AI development, wearables, etc.), and new ethical challenges have arisen with regard to privacy, integrity, and appropriateness of use. To improve data subjects’ privacy and security, we aim to identify ethically relevant issues experienced by experts in the data intensive exploitation area while collecting, using, or sharing peoples’ health data. Methods: Twelve experts, who were collecting, using, or sharing health data in different contexts in Sweden were interviewed. We used systematic expert interviews to access experts’ specialist knowledge. Thereafter, thematic analysis was used to identify categories and subcategories. The codes targeted ethical issues and approaches reported by the interviewed experts. Results: The main conceptual categories were ‘Consideration of the consequences,’ ‘Respect for rights,’ ‘Procedural compliance,’ and ‘Professional conduct.’ The respondents discussed and balanced different ethical approaches through several examples. They were morally sensitive to the problems involved in sharing health data. Conclusions: These empirical findings suggest a need for practical procedures that make it easier for data collectors and sharers to follow the ethical principles and laws relating to data sharing. We suggest that the time is now ripe to move on from policy discussions to practical technological solutions of the principles.

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Thinking Ethically About Mobile Devices

The Oxford Handbook of Mobile Communication and Society ◽

10.1093/oxfordhb/9780190864385.013.40 ◽

2020 ◽

pp. 620-636

Author(s):

Charles Ess

Keyword(s):

Cultural Differences ◽

Mobile Devices ◽

Ethical Issues ◽

Personal Relationships ◽

Ethical Challenges ◽

Wide Audience ◽

Ethical Frameworks ◽

Wide Range ◽

Ethical Approaches

The author introduces primary frameworks for analyzing and resolving common ethical issues evoked by mobile devices. These include prevailing ethical frameworks along with underlying assumptions about the nature of selfhood and identity—that is, as more individual or relational: the latter also help index important cultural differences in ethical approaches. The author shows how these apply in two exemplar cases: the Fairphone and “quantified relationship” (QR) apps. The two cases of the Fairphone and QR apps, as taking up broad issues of consumption and production as well as privacy, autonomy, and personal relationships, respectively, thus cover a relatively wide range of ethical issues relevant to a wide audience of “everyday” consumers and users. These analyses aim to also stand as examples and templates for further analyses of ethical challenges evoked by mobile devices.

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Responsibility for Information Assurance and Privacy

Advances in End User Computing - Advanced Topics in End User Computing, Volume 4 ◽

10.4018/978-1-59140-474-3.ch010 ◽

2005 ◽

pp. 186-207 ◽

Cited By ~ 2

Author(s):

Bernd Carsten Stahl

Keyword(s):

Linear Relationship ◽

Ethical Issues ◽

Information Assurance ◽

Individual Responsibility ◽

It Security ◽

Human Beings ◽

Ethical Challenges ◽

Privacy And Security ◽

Ethical Evaluation ◽

Moral Quality

Decisions regarding information assurance and IT security can affect individuals’ rights and obligations and thereby acquire a moral quality. The same can be said for questions of privacy. This chapter starts by showing how and why information assurance and privacy can become problems worthy of ethical consideration. It demonstrates that there is no simple and linear relationship between ethics and information assurance or between ethics and privacy. Many decisions in the area of IT, however, affect not only one, but both of these subjects. The ethical evaluation of decisions and actions in the area of privacy and security, therefore, is highly complex. This chapter explores the question whether individual responsibility is a useful construct to address ethical issues of this complexity. After introducing a theory of responsibility, this chapter discusses the conditions that a subject of responsibility typically is assumed to fulfill. This chapter will argue that individual human beings lack some of the essential preconditions necessary to be ascribed responsibility. Individuals have neither the power, the knowledge, nor the intellectual capacities to deal successfully with the ethical challenges in the tension of privacy and information assurance. This chapter ends by suggesting that the concept of responsibility, nevertheless, may be useful in this setting, but it would have to be expanded to allow collective entities as subjects.

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Artificial Intelligence in Health Informatics: Hype or Reality?

Yearbook of Medical Informatics ◽

10.1055/s-0039-1677951 ◽

2019 ◽

Vol 28 (01) ◽

pp. 003-004 ◽

Cited By ~ 1

Author(s):

Kate Fultz Hollis ◽

Lina F. Soualmia ◽

Brigitte Séroussi

Keyword(s):

Artificial Intelligence ◽

Ethical Issues ◽

Expert Knowledge ◽

Improve Patient Care ◽

Health Data ◽

Machine Learning Algorithms ◽

Data Availability ◽

Data Driven ◽

Editorial Team ◽

Special Topic

Objectives: To provide an introduction to the 2019 International Medical Informatics Association (IMIA) Yearbook by the editors. Methods: This editorial presents an overview and introduction to the 2019 IMIA Yearbook which includes the special topic “Artificial Intelligence in Health: New Opportunities, Challenges, and Practical Implications". The special topic is discussed, the IMIA President’s statement is introduced, and changes in the Yearbook editorial team are described. Results: Artificial intelligence (AI) in Medicine arose in the 1970’s from new approaches for representing expert knowledge with computers. Since then, AI in medicine has gradually evolved toward essentially data-driven approaches with great results in image analysis. However, data integration, storage, and management still present clear challenges among which the lack of explanability of the results produced by data-driven AI methods. Conclusion: With more health data availability, and the recent developments of efficient and improved machine learning algorithms, there is a renewed interest for AI in medicine.The objective is to help health professionals improve patient care while also reduce costs. However, the other costs of AI, including ethical issues when processing personal health data by algorithms, should be included.

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Responsibility for Information Assurance and Privacy

End-User Computing ◽

10.4018/978-1-59904-945-8.ch144 ◽

2008 ◽

pp. 2140-2156

Author(s):

Bernd Carsten Stahl

Keyword(s):

Linear Relationship ◽

Ethical Issues ◽

Information Assurance ◽

Individual Responsibility ◽

It Security ◽

Human Beings ◽

Ethical Challenges ◽

Privacy And Security ◽

Ethical Evaluation ◽

Moral Quality

Decisions regarding information assurance and IT security can affect individuals’ rights and obligations and thereby acquire a moral quality. The same can be said for questions of privacy. This article starts by showing how and why information assurance and privacy can become problems worthy of ethical consideration. It demonstrates that there is no simple and linear relationship between ethics and information assurance, nor between ethics and privacy. Many decisions in the area of IT, however, affect not only one but both of these subjects. The ethical evaluation of decisions and actions in the area of privacy and security is therefore highly complex. The article explores the question of whether individual responsibility is a useful construct to address ethical issues of this complexity. After introducing a theory of responsibility, the article discusses the conditions that a subject of responsibility is typically assumed to fulfil. The article will argue that individual human beings lack some of the essential preconditions necessary to be ascribed responsibility. Individuals have neither the power, nor the knowledge, nor the intellectual capacities to successfully deal with the ethical challenges in the tension of privacy and information assurance. The article ends by suggesting that the concept of responsibility may nevertheless be useful in this setting, but it would have to be expanded to allow collective entities as subjects.

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Responsibility for Information Assurance and Privacy

Information Security and Ethics ◽

10.4018/978-1-59904-937-3.ch213 ◽

2008 ◽

pp. 3170-3187

Author(s):

Bernd Carsten Stahl

Keyword(s):

Linear Relationship ◽

Ethical Issues ◽

Information Assurance ◽

Individual Responsibility ◽

It Security ◽

Human Beings ◽

Ethical Challenges ◽

Privacy And Security ◽

Ethical Evaluation ◽

Moral Quality

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Ethics Certification of Health Information Professionals

Yearbook of Medical Informatics ◽

10.1055/s-0038-1641196 ◽

2018 ◽

Vol 27 (01) ◽

pp. 037-040 ◽

Cited By ~ 4

Author(s):

Eike-Henner Kluge ◽

Paulette Lacroix ◽

Pekka Ruotsalainen

Keyword(s):

Health Care ◽

Information Systems ◽

Health Information ◽

Working Group ◽

Ethical Issues ◽

Care Delivery ◽

Health Data ◽

Sensitive Information ◽

Security Issue ◽

Privacy And Security

Objectives: To provide a model for ensuring the ethical acceptability of the provisions that characterize the interjurisdictional use of eHealth, telemedicine, and associated modalities of health care delivery that are currently in place. Methods: Following the approach initiated in their Global Protection of Health Data project within the Security in Health Information Systems (SiHIS) working group of the International Medical Informatics Association (IMIA), the authors analyze and evaluate relevant privacy and security approaches that are intended to stem the erosion of patients' trustworthiness in the handling of their sensitive information by health care and informatics professionals in the international context. Results: The authors found that while the majority of guidelines and ethical codes essentially focus on the role and functioning of the institutions that use EHRs and information technologies, little if any attention has been paid to the qualifications of the health informatics professionals (HIPs) who actualize and operate information systems to deal with or address relevant ethical issues. Conclusion: The apparent failure to address this matter indicates that the ethical qualification of HIPs remains an important security issue and that the Global Protection of Health Data project initiated by the SiHIS working group in 2015 should be expanded to develop into an internationally viable method of certification. An initial model to this effect is sketched and discussed.

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Ethical Issues in Dissemination and Implementation Research

10.1093/oso/9780190683214.003.0004 ◽

2017 ◽

Cited By ~ 1

Author(s):

James M. DuBois ◽

Beth Prusaczyk

Keyword(s):

Ethical Decision ◽

Ethical Decision Making ◽

Ethical Issues ◽

Dissemination And Implementation ◽

Ethical Challenges ◽

Specific Complex ◽

Dissemination And Implementation Research ◽

Research Regulations ◽

Human Participants ◽

Context Specific

This chapter focuses primarily on the protection of human participants in D&I studies. It begins by reviewing the Belmont principles that undergird US research regulations and considering the ethical case for D&I research. It then proceeds to examine some ethical issues that might arise during the course of a public health, D&I research agenda in middle schools. It covers the ethical case for D&I research and common ethical challenges. The chapter also discusses strategies for ethical decision-making. While these strategies may be beneficial to all researchers, the authors believe they are of particular value to dissemination and implementation researchers because the nature of their work—context specific, complex, and unfamiliar to many peers, collaborators, and reviewers—means they will deal with uncertainty and conflict on a regular basis, and solutions to the problems they face will rarely be found through simple reference principles, rules, or regulations.

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The neuroethical future of wearable and mobile health technology

10.1093/oso/9780198786832.003.0005 ◽

2017 ◽

Cited By ~ 2

Author(s):

Karola V. Kreitmair ◽

Mildred K. Cho

Keyword(s):

Mobile Health ◽

Ethical Issues ◽

Health Technology ◽

The Self ◽

Ethical Challenges ◽

Mobile Health Technology ◽

Healthcare Settings ◽

Healthcare It ◽

Mobile Mental Health ◽

Privacy And Confidentiality

Wearable and mobile health technology is becoming increasingly pervasive, both in professional healthcare settings and with individual consumers. This chapter delineates the various functionalities of this technology and identifies its different purposes. It then addresses the ethical challenges that this pervasiveness poses in the areas of accuracy and reliability of the technology, privacy and confidentiality of data, consent, and the democratization of healthcare. It also looks at mobile mental health apps as a case study to elucidate the discussion of ethical issues. Finally, the chapter turns to the question of how this technology and the associated “quantification of the self” affect traditional modes of epistemic access to and phenomenological conceptions of the self.

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Pandemic Disease, Public Health, and Ethics

The Oxford Handbook of Public Health Ethics ◽

10.1093/oxfordhb/9780190245191.013.69 ◽

2019 ◽

pp. 796-811 ◽

Cited By ~ 1

Author(s):

Maxwell Smith ◽

Ross Upshur

Keyword(s):

Public Health ◽

Ethical Issues ◽

Ethical Challenges ◽

Pandemic Preparedness ◽

Scarce Resources ◽

Ethical Frameworks ◽

Health Measures ◽

Care Workers ◽

The Face ◽

Conducting Research

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.

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The Oxford Handbook of Ethics of AI

10.1093/oxfordhb/9780190067397.001.0001 ◽

2020 ◽

Cited By ~ 1

Keyword(s):

Artificial Intelligence ◽

Ethical Issues ◽

Rapid Development ◽

Data Driven ◽

International Human Rights Law ◽

Human Knowledge ◽

Human Rights Law ◽

Ai Ethics ◽

And Behavior ◽

Control Complex

This book explores the intertwining domains of artificial intelligence (AI) and ethics—two highly divergent fields which at first seem to have nothing to do with one another. AI is a collection of computational methods for studying human knowledge, learning, and behavior, including by building agents able to know, learn, and behave. Ethics is a body of human knowledge—far from completely understood—that helps agents (humans today, but perhaps eventually robots and other AIs) decide how they and others should behave. Despite these differences, however, the rapid development in AI technology today has led to a growing number of ethical issues in a multitude of fields, ranging from disciplines as far-reaching as international human rights law to issues as intimate as personal identity and sexuality. In fact, the number and variety of topics in this volume illustrate the width, diversity of content, and at times exasperating vagueness of the boundaries of “AI Ethics” as a domain of inquiry. Within this discourse, the book points to the capacity of sociotechnical systems that utilize data-driven algorithms to classify, to make decisions, and to control complex systems. Given the wide-reaching and often intimate impact these AI systems have on daily human lives, this volume attempts to address the increasingly complicated relations between humanity and artificial intelligence. It considers not only how humanity must conduct themselves toward AI but also how AI must behave toward humanity.

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