Mobile health ethics and the expanding role of autonomy
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Mhealth technology is mushrooming world-wide and, in a variety of forms, reaches increasing numbers of users in ever-widening contexts and virtually independent from standard medical evidence assessment. Yet, debate on the broader societal impact including in particular mapping and classification of ethical issues raised has been limited. This article, as part of an ongoing empirically informed ethical research project, 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. On closer examination, however, these references are frequently ambivalent or vague, perpetuating the at times uncritical use of established autonomy concepts in medical ethics. 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.
KeywordsMhealth Ethics Datafication Autonomy Empowerment Democratisation
This article is part of the research project “Medicine 4.0—the ethical basis of digitalised healthcare” funded by the German Ministry of Health.
- Albrecht, Urs-Vito (ed.) 2016. Chancen und Risiken von Gesundheits-Apps (CHARISMHA). http://www.charismha.de/ Accessed 18 Jan 2019.
- Albrecht, Urs-Vito, and Heiner Fangerau. 2015. Do ethics need to be adapted to mhealth? A plea for developing a consistent framework. World Medical Journal 61 (2): 72–75.Google Scholar
- Alpay, Laurence, Paul van der Boog, and Adrie Dumaij. 2011. An empowerment-based approach to developing innovative e-health tools for self-management. Health Informatics Journal 17 (4): 247–255.Google Scholar
- Árnason, Vilhjálmur. 2012. The personal is political: Ethics and personalized medicine. Ethical Perspectives 19 (1): 103–122.Google Scholar
- Becker, Stefan, Talva Miron-Shatz, Nikolaus Schumacher, Johann Krocza, Clarissa Diamantidis, and Urs-Vito Albrecht. 2014. mhealth 2.0: Experiences, possibilities, and perspectives. JMIR mHealth and uHealth 2 (2): e24.Google Scholar
- Bhuyan, Soumitra, Hyunmin Kim, Oluwaseyi O. Isehunwa, Naveen Kumar, Jay Bhatt, David K. Wyant, et al. 2017. Privacy and security issues in mobile health: Current research and future directions. Health Policy and Technology 6 (2): 188–191.Google Scholar
- Brown, Ian, and Andrew A. Adams. 2007. The ethical challenges of ubiquitous healthcare. International Review of Information Ethics 8 (12): 53–60.Google Scholar
- Carter, Adrian, Jacki Liddle, Wayne Hall, and Helen Chenery. 2015. Mobile phones in research and treatment: Ethical guidelines and future directions. JMIR mHealth and uHealth 3 (4): e95.Google Scholar
- Char, Danton S., Nigam H. Shah, and David Magnus. 2018. Implementing machine learning in health care—Addressing ethical challenges. The New England Journal of Medicine 378 (11): 979–981.Google Scholar
- Couldry, Nick, and Jun Yu. 2018. Deconstructing datafication’s brave new world. New Media & Society 20 (12): 4473–4491.Google Scholar
- Deutscher Ethikrat. 2017. Big Data und Gesundheit – Datensouveränität als informationelle Freiheitsgestaltung. https://www.ethikrat.org/fileadmin/Publikationen/Stellungnahmen/deutsch/stellungnahme-big-data-und-gesundheit.pdf. Accessed 18 Jan 2019.
- Dorn, Spencer D. 2015. Digital health: Hope, hype, and Amara’s law. Gastroenterology 149 (3): 516–520.Google Scholar
- European Commission. 2014. Green paper on mobile health (“mHealth”). https://ec.europa.eu/digital-single-market/en/news/green-paper-mobile-health-mhealth. Accessed 18 Jan 2019.
- Goldstein, Melissa M., and Daniel G. Bowers. 2015. The patient as consumer: Empowerment or commodification? Journal of Law, Medicine & Ethics 43 (1): 162–165.Google Scholar
- Grafenstein, M. v. et al. 2018. Nudging: Regulierung durch Big Data und Verhaltenswissenschaften, ABIDA-Gutachten. http://www.abida.de/sites/default/files/ABIDA-Gutachten_Nudging.pdf. Accessed 18 Jan 2019.
- Groß, Dominik, and Mathias Schmidt. 2018. E-Health und Gesundheitsapps aus medizinethischer Sicht: wollen wir alles, was wir können? Bundesgesundheitsblatt 61 (3): 349–357.Google Scholar
- Hall, Charles S., Edward Fottrell, Sophia Wilkinson, and Peter Byass. 2014. Assessing the impact of mHealth interventions in low- and middle-income countries—What has been shown to work? Global Health Action 7 (1): 25606.Google Scholar
- Ho, Anita, and Oliver Quick. 2018. Leaving patients to their own devices? Smart technology, safety and therapeutic relationships. BMC Medical Ethics 19 (1): 18.Google Scholar
- Kim, Henna, and Bo Xie. 2017. Health literacy in the ehealth era: A systematic review of the literature. Patient Education and Counseling 100 (6): 1073–1082.Google Scholar
- Kreitmair, Karola V., and Mildred K. Cho. 2017. The neuroethical future of wearable and mobile health technology. In Neuroethics: Anticipating the future, ed. Judy Illes, 80–107. Oxford: Oxford University Press.Google Scholar
- Kreps, Gary L. 2017. The relevance of health literacy to mHealth. Information Services and Use 37 (2): 123–130.Google Scholar
- Krieger, William H. 2013. Medical apps: Public and academic perspectives. Perspectives in Biology and Medicine 56 (2): 259–273.Google Scholar
- Lemire, Marc. 2010. What can be expected of information and communication technologies in terms of patient empowerment in health? Journal of Health Organization and Management 24 (2): 167–181.Google Scholar
- Lin, Trisha T.C., and John Robert Bautista. 2017. Understanding the relationships between mHealth apps’ characteristics, trialability, and mhealth literacy. Journal of Health Communication 22 (4): 346–354.Google Scholar
- Lupton, Deborah. 2013. The digitally engaged patient: Self-monitoring and self-care in the digital health era. Social Theory & Health 11 (3): 256–270.Google Scholar
- Mai, Jens-Erik. 2016. Big data privacy: The datafication of personal information. The Information Society 32 (3): 192–199.Google Scholar
- Mantwill, Sarah, Maddalena Fiordelli, Ramona Ludolph, and Peter J. Schulz. 2015. EMPOWER-support of patient empowerment by an intelligent self-management pathway for patients: Study protocol. BMC Medical Informatics and Decision Making 15: 18.Google Scholar
- Manzeschke, Arne et al. 2015. Ethical questions in the area of age appropriate assisting systems. https://www.nks-mtidw.de/dokumente/meestar-studie-englisch. Accessed 18 Jan 2019.
- Marckmann, Georg. 2016. Ethische Aspekte von eHealth. In ehealth in Deutschland: Anforderungen und Potenziale innovativer Versorgungsstrukturen, ed. Florian Fischer and Alexander Krämer, 83–99. Berlin: Springer.Google Scholar
- Maturo, Antonio, and Veronica Moretti. 2018. Digital health and the gamification of life: How apps can promote a positive medicalization. Bingley: Emerald Publishing.Google Scholar
- Mittelstadt, Brent. 2017. Ethics of the health-related internet of things: A narrative review. Ethics and Information Technology 19 (3): 157–175.Google Scholar
- Mittelstadt, Brent Daniel, Patrick Allo, Mariarosaria Taddeo, Sandra Wachter, and Luciano Floridi. 2016. The ethics of algorithms: Mapping the debate. Big Data & Society 3 (2): 1–21.Google Scholar
- Nuffield Council on Bioethics. 2015. The collection, linking and use of data in biomedical research and health care: Ethical issues. http://nuffieldbioethics.org/wp-content/uploads/Biological_and_health_data_web.pdf. Accessed 18 Jan 2019.
- Ofili, Elizabeth O., et al. 2018. Democratizing discovery health with n=me. Transactions of the American Clinical and Climatological Association 129: 215–234.Google Scholar
- Patrick, John R. 2015. How mHealth will spur consumer-led healthcare. mHealth 1: 14.Google Scholar
- Rich, Emma, and Andy Miah. 2017. Mobile, wearable and ingestible health technologies: Towards a critical research agenda. Health Sociology Review 26 (1): 84–97.Google Scholar
- Risling, Tracie, Juan Martinez, Jeremy Young, and Nancy Thorp-Froslie. 2017. Evaluating patient empowerment in association with eHealth technology: Scoping review. Journal of Medical Internet Research 19 (9): e329.Google Scholar
- Rubeis, Giovanni, Maximilian Schochow, and Florian Steger. 2018. Patient autonomy and quality of care in telehealthcare. Science and Engineering Ethics 24 (1): 93–107.Google Scholar
- Ruckenstein, Minna, and Natasha Dow Schüll. 2017. The datafication of health. Annual Review of Anthropology 46 (1): 261–278.Google Scholar
- Schüll, Natasha Dow. 2016. Data for life: Wearable technology and the design of self-care. BioSocieties 11 (3): 317–333.Google Scholar
- Sharon, Tamar. 2015. Healthy citizenship beyond autonomy and discipline: Tactical engagements with genetic testing. BioSocieties 10 (3): 295–316.Google Scholar
- Sharon, Tamar. 2017. Self-tracking for health and the quantified self: Re-articulating autonomy, solidarity, and authenticity in an age of personalized healthcare. Philosophy and Technology 30 (1): 93–121.Google Scholar
- Smith, Robert J., et al. 2016. Transforming scientific inquiry: Tapping into digital data by building a culture of transparency and consent. Academic Medicine 91 (4): 469–472.Google Scholar
- Swan, Melanie. 2012. Health 2050: The realization of personalized medicine through crowdsourcing, the quantified self, and the participatory biocitizen. Journal of Personalized Medicine 2 (3): 93–118.Google Scholar
- Topol, Eric J. 2012. The creative destruction of medicine: How the digital revolution will create better health care. New York: Basic Books.Google Scholar
- Topol, Eric J. 2015. The patient will see you now: The future of medicine is in your hands. New York: Basic Books.Google Scholar
- Torous, John, and Laura Weiss Roberts. 2017. Needed innovation in digital health and smartphone applications for mental health: Transparency and trust. JAMA Psychiatry 74 (5): 437–438.Google Scholar