mHealth Ethics Bibliography

What is the mHealth Hub Ethics Bibliography? The project partners addressing ethical and regulatory aspects of the mHealth Hub (PCHA and MDOG)  have developed the Quick Guide to Ethics as a core resource for all project partners and the mHealth Hub itself.   The Quick Guide serves as an orientation tool to help guide the reader through some of the vast body of literature on ethics in mHealth. As this literature is diverse and constantly growing, a living bibliography  has been created. At present it includes articles and books referenced in the Quick Guide and other relevant articles.

 

How can you help grow the bibliography? The bibliography is a living document to which all audiences are invited to add. You can do this sending your reference to  info@mhealth-hub.org and it will be added for you.  You can suggest references either to the ‘general’ section at the top of the bibliography, or to one of the four thematic sections.

 

  • Author –  please use the last name followed by initial format
  • Title – please give the full title of the article or book
  • Key issues  – please give a short summary highlighting how the reference is relevant to mHealth
  • Reference  – please give the reference using the Harvard referencing style and include a URL link if possible.

 

Thanks for your valuable contribution.

GENERAL

Principles of Biomedical Ethics

by Beauchamp TL, Childress JF.

 

Considered to a seminal text of medical ethics in the western world. Sets out what is held by many to be the 4 core medical ethical principles: beneficence (the duty to do good), non-maleficence (the duty to do no harm), justice (fair access), autonomy of both the patient and the health professional.

 

Beauchamp TL, Childress JF. Principles of biomedical ethics. 5th edition. New York: Oxford University Press; 2001.

 

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Medical ethics: Four principles plus attention to scope

by Gillon R

 

Discussion of Beauchamp and Childress

 

Gillon R. Medical ethics: Four principles plus attention to scope. BMJ 1994;309(5):184

 

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Further Development of Beauchamp and Childress’ Theory Based on Empirical Ethics

by Ebbesen M, Andersen S, and Pedersen B

 

investigate whether there are indications that the bioethical principles of Beauchamp and Childress are specifically western or whether they are cross cultural.

 

Ebbesen M, Andersen S, Pedersen B. Further Development of Beauchamp and Childress’ Theory Based on Empirical Ethics. Journal of Clinical Research and Bioethics 3 (1) (2012) S6:e001. doi:10.4172/2155-9627.S6-e001

 

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The four principles: Can they be measured and do they predict ethical decision making?

by Page K

 

Study with 94 first year psychology students from the University of Queensland, Australia. Using the AHP to measure the relative importance of the different medical ethical principles for individuals, the most important principle is, without ambiguity, “Non maleficence”. The weight of this principle is twice as large as any of the other principles. The other principles (“Autonomy”, “Justice”, and “Truth telling”) have roughly similar weight, with “Truth telling” being the least important principle.

 

Page, K. The four principles: Can they be measured and do they predict ethical decision making? BMC Med Ethics 13, 10 (2012) doi: 10.1186/1472-6939-13-10

 

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Ethics guidelines for trustworthy AI

by High Level Group on Ethics in AI

 

Initial document of the High Level Group on Ethics in AI, setting out 4 core ethical imperatives and 7 tools for their realisation. Although targetted to AI, the basic principles are highly applicable to mHealth

 

Beauchamp TL, Childress JF. Principles of biomedical ethics. 5th edition. New York: Oxford University Press; 2001.

 

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Ethical perspectives on E‑health and health apps : Is all that is achievable desirable?

by Groß D, Schmidt M

 

Relevant evaluation criteria include benefit and damage potential, possible repercussions on the physician-patient relationship, self-efficacy, and self-determination (autonomy) of the actors based on full knowledge, appropriate attribution of responsibility, and the access and distribution of rights.This report meditates on the ethical evaluation of E‑health and the role of ethics in developing new medical technologies.
Note: German, only abstract in English

 

Groß D, Schmidt M. [Ethical perspectives on E‑health and health apps : Is all that is achievable desirable?] Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz. 2018 Mar;61(3):349-357. DOI: 10.1007/s00103-018-2697-z.

 

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Just Health: Meeting Health Needs Fairly

by Daniels N

 

This book presents an integrated theory of justice and population health, to address a set of theoretical and real-world challenges to that theory, and to demonstrate that the theory can guide our practice with regard to health both here and abroad.

 

Daniels N. Just Health: Meeting Health Needs Fairly. Cambridge: Cambridge University Press; 2007. https://doi.org/10.1017/CBO9780511809514

 

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Teaching seven principles for public health ethics: towards a curriculum for a short course on ethics in public health programmes

by Schröder-Bäck P, Duncan P, Sherlaw W. et al.

 

Outlines seven principles:
Non-maleficence, Beneficence, Health maximisation, Efficiency, Respect for autonomy, Justice, proportionality

 

Schröder-Bäck P, Duncan P, Sherlaw W. et al. Teaching seven principles for public health ethics: towards a curriculum for a short course on ethics in public health programmes. BMC Med Ethics 15, 73 (2014) https://doi.org/10.1186/1472-6939-15-73

 

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Apps as Artefacts: Towards a Critical Perspective on Mobile Health and Medical Apps

by Lupton D

 

Presents an argument for approaching the study of mobile apps as sociocultural artefacts, focusing specifically on those that have been developed on health and medical topics.
This perspective acknowledges that apps are digital objects that are the products of human decision-making, underpinned by tacit assumptions, norms and discourses already circulating in the social and cultural contexts in which they are generated, marketed and used.

 

Lupton, D. Apps as Artefacts: Towards a Critical Perspective on Mobile Health and Medical Apps. Societies 2014, 4, 606-622. https://doi.org/10.3390/soc4040606

 

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Do Ethics Need to be Adapted to mHealth?

by Albrecht UV, Fangerau H

 

A short overview of existing codes of ethics, scrutinizeing their applicability for mHealth related problems and present a guideline compiled from suitable points taken from them.

 

Albrecht UV, Fangerau H. Do Ethics Need to be Adapted to mHealth? Stud Health Technol Inform. 2015;213:219-22. PMID: 26152998.

 

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Privacy Assessment in Mobile Health Apps: Scoping Review

by Benjumea J, Ropero J, Rivera-Romero O, et al.

 

This scoping review aims to understand how privacy is assessed for mHealth apps, focusing on the components, scales, criteria, and scoring methods used. A simple taxonomy to categorize the privacy assessments of mHealth apps based on component evaluation is also proposed.

Benjumea J, Ropero J, Rivera-Romero O et al. Privacy Assessment in Mobile Health Apps: Scoping Review. JMIR Mhealth Uhealth 2020;8(7):e18868. doi: 10.2196/18868

 

 


ACCOUNTABILITY

SERIES: eHealth in primary care. Part 2: Exploring the ethical implications of its application in primary care practice

by Boers SN, Jongsma KR, Lucivero F, et al.

 

The authors argue what ethical implications related to the impact of eHealth on four vital aspects of primary care could (and should) be anticipated

 

Boers SN, Jongsma KR, Lucivero F, et al. SERIES: eHealth in primary care. Part 2: exploring the ethical implications of its application in primary care practice. European Journal of General Practice. 2020 Dec 16;26(1):26-32. doi.org/10.1080/13814788.2019.1678958

 

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What is accountability in health care?

by Emanuel EJ, Emanuel LL.

 

The concept of accountability contains three essential components: 1) the loci of accountability- the people or organisations that can be held accountable or hold others accountable; 2) the domains of accountability, including professional competence, legal and ethical conduct, financial performance, adequacy of access, public health promotion, and community benefit; and 3) the procedures of accountability, including formal and informal procedures for evaluating compliance with domains and for disseminating the evaluation and responses by the accountable parties.

 

Emanuel EJ, Emanuel LL. What is accountability in health care? Ann Intern Med. 1996 Jan 15;124(2):229-39. doi: 10.7326/0003-4819-124-2-199601150-00007. PMID: 8533999

 

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A mobile revolution for healthcare? Setting the agenda for bioethics

by Lucivero F, Jongsma KR

 

According to industry and policy makers, these systems offer efficient and cost-effective solutions for disease prevention and self-management. While this development raises many ethically relevant questions, so far mHealth has received only little attention in medical ethics. This paper provides an overview of bioethical issues raised by mHealth and aims to draw scholarly attention to the ethical significance of its promises and challenges

 

Lucivero F, Jongsma KR. A mobile revolution for healthcare? Setting the agenda for bioethics. Journal of Medical Ethics 2018;44:685-689 https://jme.bmj.com/content/44/10/685

 

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Studying social accountability in the context of health system strengthening: innovations and considerations for future work

by Boydell, V., McMullen, H., Cordero, J. et al.

 

In June 2017, scientists and implementers working in the area of social accountability came together to share experiences, discuss approaches, identify research gaps and consider directions for future studies. This paper shares learnings from this discussion.

 

Boydell, V., McMullen, H., Cordero, J. et al. Studying social accountability in the context of health system strengthening: innovations and considerations for future work. Health Res Policy Sys 17, 34 (2019). https://doi.org/10.1186/s12961-019-0438-x

 

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Data protection

Digital health: meeting the ethical and policy challenges

by Effy V, Tobias H, Afua A. et al.

 

Set out five conditions for ethical digital health: access to sufficient amounts of data; alignment with existing legal provisions regarding data protection, data security and privacy; robust and transparent accountability; evidence of safety and efficacy; trust in both developers and regulators,

 

Effy V, Tobias H, Afua A. et al. Digital health: meeting the ethical and policy challenges. Swiss Med Wkly. 2018;148:w14571 DOI: https://doi.org/10.4414/smw.2018.14571

 

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Harm/non maleficence

Intelligent Glasses, Watches and Vests…Oh My! Rethinking the Meaning of “Harm” in the Age of Wearable Technologies

by Jadad AR, Fandiño M, Lennox R

 

The widespread release and adoption of wearable devices will likely accelerate the “hybrid era”, already initiated by mobile digital devices, with progressively deeper levels of human-technology co-evolution and increasing blurring of our boundaries with machines. Questions about the potentially harmful nature of information and communication technologies have been asked before, since the introduction of the telephone, the Web, and more recently, mobile phones. Our capacity to answer them now is limited by outdated conceptual approaches to harm, mostly derived from drug evaluation; and by the slow and static nature of traditional research tools. In this article, we propose a re-conceptualizing of the meaning of “harm”, which builds on a global effort focused on health, adding flexibility and richness within a context that acknowledges the physical, mental, and social domains in which it can occur

 

Jadad AR, Fandiño M, Lennox R. Intelligent Glasses, Watches and Vests…Oh My! Rethinking the Meaning of “Harm” in the Age of Wearable Technologies. JMIR Mhealth Uhealth 2015;3(1):e6 doi: 10.2196/mhealth.3565 PMID: 25668291PMCID: 4323196

Jadad AR, Fandiño M, Lennox R
Intelligent Glasses, Watches and Vests…Oh My! Rethinking the Meaning of “Harm” in the Age of Wearable Technologies
JMIR Mhealth Uhealth 2015;3(1):e6
doi: 10.2196/mhealth.3565
PMID: 25668291
PMCID: 4323196

 


Harm/non maleficence

SERIES: eHealth in primary care. Part 2: Exploring the ethical implications of its application in primary care practice

by Boers SN, Jongsma KR, Lucivero F, et al.

 

The authors argue what ethical implications related to the impact of eHealth on four vital aspects of primary care could (and should) be anticipated

 

Boers SN, Jongsma KR, Lucivero F, et al. SERIES: eHealth in primary care. Part 2: exploring the ethical implications of its application in primary care practice. European Journal of General Practice. 2020 Dec 16;26(1):26-32. doi.org/10.1080/13814788.2019.1678958

 

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Harm/non maleficence

Privacy Assessment in Mobile Health Apps: Scoping Review

by Benjumea J, Ropero J, Rivera-Romero O, et al.

 

This scoping review aims to understand how privacy is assessed for mHealth apps, focusing on the components, scales, criteria, and scoring methods used. A simple taxonomy to categorize the privacy assessments of mHealth apps based on component evaluation is also proposed.

 

Benjumea J, Ropero J, Rivera-Romero O et al. Privacy Assessment in Mobile Health Apps: Scoping Review. JMIR Mhealth Uhealth 2020;8(7):e18868. doi: 10.2196/18868

 

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AGENCY

The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem

by Morley J, Floridi L

 

This article highlights the limitations of the tendency to frame health- and wellbeing-related digital tools (mHealth technologies) as empowering devices, especially as they play an increasingly important role in the National Health Service (NHS) in the UK. It argues that mHealth technologies should instead be framed as digital companions.
This shift from empowerment to companionship is advocated by showing the conceptual, ethical, and methodological issues challenging the narrative of empowerment, and by arguing that such challenges, as well as the risk of medical paternalism, can be overcome by focusing on the potential for mHealth tools to mediate the relationship between recipients of clinical advice and givers of clinical advice, in ways that allow for contextual lexibility in the balance between patiency and agency.
The article concludes by stressing that reframing the narrative cannot be the only means for avoiding harm caused to the NHS as a healthcare system by the introduction of mHealth tools. Future discussion will be needed on the overarching role of responsible design.

 

Morley J, Floridi L. The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem. Sci Eng Ethics 26, 1159–1183 (2020). https://doi.org/10.1007/s11948-019-00115-1

 

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Autonomy

Health as a Means Towards Profitable Ends: mHealth Apps, User Autonomy, and Unfair Commercial Practices

by Sax M, Helberger N, Bol N.

 

In this article, the authors discuss mHealth apps and their potential to influence the user’s behaviour in increasingly persuasive ways. More specifically, they call attention to the fact that mHealth apps often seek to not only influence the health behaviour of users but also their economic behaviour by merging health and commercial content in ways that are hard to detect

 

Sax M, Helberger N, Bol, N. Health as a Means Towards Profitable Ends: mHealth Apps, User Autonomy, and Unfair Commercial Practices. J Consum Policy 41, 103–134 (2018). https://doi.org/10.1007/s10603-018-9374-3

 

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Autonomy

‘Hypernudge’: Big Data as a mode of regulation by design

Yeung, K

 

This paper draws on regulatory governance scholarship to argue that the analytic phenomenon currently known as ‘Big Data’ can be understood as a mode of ‘design-based’ regulation. Although Big Data decision-making technologies can take the form of automated decision-making systems, this paper focuses on algorithmic decision-guidance techniques.

 

Yeung, K (2017) ‘Hypernudge’: Big Data as a mode of regulation by design, Information, Communication & Society, 20:1, 118-136, DOI: 10.1080/1369118X.2016.1186713

 

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Autonomy

Mobile health ethics and the expanding role of autonomy

Schmietow B, Marckmann G

 

This article provides an overview of ethical issues of mhealth applications with a specific focus on implications on autonomy as a key notion in the debate.
A multi-stage model of references to the potential of mhealth use for strengthening some or other form of self-determination will be proposed as a descriptive tool.
It illustrates an assumed continuum of enhanced autonomy via mhealth broadly conceived: from patient to user autonomy, to improved health literacy, and finally to the vision of supra-individual empowerment and democratised, participatory health and medicine as a whole.
The article suggests zooming in on the range of autonomy-related aspects against the backdrop of digital innovation and datafied health more generally, and on this basis add to existing frameworks for the ethical evaluation of mhealth more specifically.

 

Schmietow B, Marckmann G. Mobile health ethics and the expanding role of autonomy. Med Health Care Philos. 2019 Dec;22(4):623-630. doi: 10.1007/s11019-019-09900-y. PMID: 31011945.

 

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Autonomy

Application of Ethics for Providing Telemedicine Services and Information Technology

by Langarizadeh M, Moghbeli F, Aliabadi A.

 

Telemedicine however can imply accompanied by a threat to patients’ personal information. Therefore, suggestions are made to investigate ethics in technology, to offer standards and guidelines to therapists. Due to the advancement in technology, access to information has become simpler than the past.

 

Langarizadeh M, Moghbeli F, Aliabadi A. Application of Ethics for Providing Telemedicine Services and Information Technology. Med Arch. 2017 Oct;71(5):351-355. doi: 10.5455/medarh.2017.71.351-355. PMID: 29284905; PMCID: PMC5723167.

 

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Autonomy

Assessment of the Fairness of Privacy Policies of Mobile Health Apps: Scale Development and Evaluation in Cancer Apps

by Benjumea J, Ropero J, Rivera-Romero O et al.

 

Cancer patients are increasingly using mobile health (mHealth) apps to take control of their health. Many studies have explored their efficiency, content, usability, and adherence; however, these apps have created a new set of privacy challenges, as they store personal and sensitive data.The paper presents a scale for the assessment of mHealth apps and provides developers with a tool to evaluate their privacy policies. A very practical tool, built on KT Assessment criteria

 

Benjumea J, Ropero J, Rivera-Romero O, Dorronzoro-Zubiete E, Carrasco A Assessment of the Fairness of Privacy Policies of Mobile Health Apps: Scale Development and Evaluation in Cancer Apps JMIR Mhealth Uhealth 2020;8(7):e17134 doi: 10.2196/17134 PMID: 32720913 PMCID: 7420637

 

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EQUITABLE ACCESS

Ethics of digital health tools

by Caiani, E

 

Reviews a range of ethical issues, but notes in particular Health Equity as the absence of discrimination or unfair health disparities, to be achieved by minimising such health disparities among groups of people who have different levels of underlying social advantage. However, no availability of computer technology or limited access to the Internet, lack of the required skills and physical access barriers (which mainly affect low-income classes, the elderly, and people with disabilities) could represent a limiting factor for the accessibility of these new services to those categories that are expected to receive more benefit from it, thus exacerbating disparities in healthcare qualities and outcomes, so reinforcing what has been described as the “digital divide”

 

Caiani, E. Ethics of digital health tools. E-Journal of Cardiology Practice. Vol. 18, N° 27 – 08 Jul 2020

 

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Ethical aspects of digital health from a justice point of view

by Brall C, Schröder-Bäck P, Maeckelberghe E

 

Looks at digital health challenges from an ethical perspective, focusing especially on the dimension of justice—a value, which has been described as the core value for public health. Analysed through the lenses of a standard approach for health justice.

 

Brall C, Schröder-Bäck P, Maeckelberghe E. Ethical aspects of digital health from a justice point of view. European journal of public health. 2019 Oct 1;29(Supplement_3):18-22. https://doi.org/10.1093/eurpub/ckz167

 

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Beneficence

Europaweite Leitlinien zur digitalen Ethik im Vergleich – Comparison of guidelines on digital ethics in Europe

by Gadea, I – Institute for Digital transformation of Healthcare

 

This German Language document provides an overview of all (many?) ethical guidelines on digital health in Europe, specified according to the stakeholder emmitting the guideline (Government, industry, NGO) and the audience it adresses (again Government, industry, NGO). It states 5 major ‘values’ show up throughiout the documents screned: transparency, beneficence, impartiality (bias), explainability, autonomy.

 

Gadea, I Europaweite Leitlinien zur digitalen Ethik im Vergleich – (Comparison of guidelines on digital ethics in Europe) – Institute for Digital transformation of Healthcare

 

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Beneficence

Ethical aspects of digital health from a justice point of view

by Brall C, Schröder-Bäck P, Maeckelberghe E

 

This article aims at outlining chances and challenges from an ethical perspective, focusing especially on the dimension of justice, a core value for public health. Analysed through the lenses of a standard approach for health justice—Norman Daniels’ account of just health and accountability for reasonableness—most recent and relevant literature was reviewed and challenges from a justice point of view were identified.

 

Brall C, Schröder-Bäck P, Maeckelberghe E. Ethical aspects of digital health from a justice point of view. European Journal of Public Health, Volume 29, Issue Supplement_3, October 2019, Pages 18–22, https://doi.org/10.1093/eurpub/ckz167

 

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Beneficence

The Ethical Implications of Personal Health Monitoring

by Mittelstadt, B, Fairweather, B, Shaw, M et al.

 

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need.

 

Mittelstadt, B, Fairweather, B, Shaw, M, McBride, N. (2014). The ethical implications of personal health monitoring. International Journal of Technoethics (IJT), 5(2), 37-60. doi:10.4018/ijt.2014070104

 

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TRANSPARENCY

Why Reviewing Apps Is Not Enough: Transparency for Trust (T4T) Principles of Responsible Health App Marketplaces

by Wykes T, Schueller S

 

The authors outline four guiding principles named as the Transparency for Trust (T4T) principles, which are derived from experimental studies, systematic reviews, and reports of patient concerns. The T4T principles are (1) privacy and data security, (2) development characteristics, (3) feasibility data, and (4) benefits.

 

Wykes T, Schueller S. Why Reviewing Apps Is Not Enough: Transparency for Trust (T4T) Principles of Responsible Health App MarketplacesJ Med Internet Res 2019;21(5):e12390 DOI: 10.2196/12390

 

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The ethics of information transparency

by Turilli M, Floridi L

 

The paper investigates the ethics of information transparency (henceforth transparency). It argues that transparency is not an ethical principle in itself but a proethical condition for enabling or impairing other ethical practices or principles. A new definition of transparency is offered in order to take into account the dynamics of information production and the differences between data and information.

 

Turilli M, Floridi L. The ethics of information transparency. Ethics Inf Technol 11, 105–112 (2009). https://doi.org/10.1007/s10676-009-9187-9

 

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