By Samantha Denefrio PhD
Background: Ethical and social considerations have always been a part of the discussion as the health technology industry continues to grow and become the future of healthcare delivery. However, the methods by which to ensure a high level of ethics in the development and implementation of new innovations are far from standardized. To do so, health technology creators and entrepreneurs should (1) look to bioethics and social scientists for consultation and incorporate academic, peer-reviewed research on the product’s (2) efficacy and (3) ethics such as data confidentiality (Lehoux & Williams-Jones, 2016).
In particular, mobile technology has provided new treatment options that are free and accessible. Despite the obvious and significant advantages to these new and rapid delivery systems, there are no current ethical standards for the development or monitoring of health applications. The field of psychology has looked to the ethical guidelines of the American Psychological Association (APA) to interpret how they apply to mental health apps.
The key areas of concern are how to maintain user privacy and confidentiality. A recent article discusses the risks associated with features used by many apps to encourage compliance such as regular notifications (Jones & Moffitt, 2016). Another important privacy issue is determining who is the owner of the extensive and personal data collected via apps and who can decide how it is used for research purposes. In other words, what are an individual’s rights when using health tech apps and how are users protected.
Older Adults: Mobile health and smart home technology use in the elderly has the potential to help people stay independent longer and be safe in their own homes but also comes with a unique set of ethical considerations. For a proposed framework that outlines the importance of transparent informed consent practices and maximizing user-friendly designs, see Demiris, Doorenbos, and Towle (2009).
A 2016 review found that privacy was the main ethical concern and that older adults were reluctant to share personal information with anyone outside of medical practitioners (Chung, Demiris, & Thompson, 2016). Furthermore, unlike younger adults, elderly individuals were less familiar with common practices of app usage and how personal data is transmitted through the web and more concerned about the cost of smart home devices. Lastly, the review reported that research involving older adults found that a doctor or primary care provider interaction component was preferred and increased tech compliance.
Intellectual Disabilities: Individuals with an intellectual disability make up another population that warrants special consideration when using health technology. Ensuring informed consent is particularly important as well as avoiding unintentional coercion (Perry, Beyer, Holm, 2009). In addition, practical challenges also arise. For example, smart home technology that is installed to assist and monitor the health of a person with an intellectual disability may also be inadvertently collecting data from other people living in the house. Lastly, it is necessary to consider ways to minimize stigma when designing wearable technology to assist in daily activities.
Human Genome Research: Advances in DNA sequencing have made it possible to learn new and groundbreaking facts about the human genome. Although the positive implications for this line of research are vast, the way in which data is collected, studied, and stored must be carefully considered. Of particular importance is the difficulty in ensuring data privacy. For genome research, data privacy should mean that each person’s data is only used in appropriate ways that are consistent with the person’s intent (Wang et al., 2017). Recently, the sharing of millions of human genomes through open source networks has introduced new risks for re-identifying de-identified data. One solution previously imposed by the NIH was the removal of aggregate genomic data from public sharing websites (Zerhouni & Nabel, 2008).
A second important concern is that, as research questions evolve, the need to link multiple electronic health records to individual genomes will become the necessary next step. Inevitably, new solutions will have to be created to minimize error in matching various data sources to maintain data accuracy while limiting the number of personal identifier used to connect data (Wang et al., 2017).
Conclusions: Taken together, research suggests that there are a number of important risks to consider. When it comes to continued progress in health technology, the goal should be to focus on ethics and user safety early on in the design process. The advent of telehealth and mobile health applications should seek to enhance the care given by a provider rather than to replace the provider (Torous & Roberts, 2017). Furthermore, more oversight is needed to enforce the rights of the user and to maximize research opportunities without sacrificing data privacy.
Keywords: mHealth, ethics, health technology, health technology assessment
Key Learning Points:
Search Methods: Articles were extracted from Google Scholar with results ranging from 2007 to present date and using the following search terms: “ethical considerations health technology”, “ethics in mHealth”, ethical considerations health technology special populations”.
Chung, J., Demiris, G., & Thompson, H. J. (2016). Ethical considerations regarding the use of smart home technologies for older adults: an integrative review. Annual review of nursing research, 34(1), 155-181.
Demiris, G., Doorenbos, A. Z., & Towle, C. (2009). Ethical considerations regarding the use of technology for older adults: The case of telehealth. Research in gerontological nursing, 2(2), 128-136.
Jones, N., & Moffitt, M. (2016). Ethical guidelines for mobile app development within health and mental health fields. Professional Psychology: Research and Practice, 47(2), 155-162.
Lehoux, P., & Williams-Jones, B. (2007). Mapping the integration of social and ethical issues in health technology assessment. International journal of technology assessment in health care, 23(1), 9-16.
Perry J, Beyer S, Holm S. Assistive technology, telecare and people with intellectual disabilities: ethical considerations. Journal of Medical Ethics 2009;35:81-86.
Torous, J., & Roberts, L. W. (2017). The ethical use of mobile health technology in clinical psychiatry. The Journal of nervous and mental disease, 205(1), 4-8.
Wang, S., Jiang, X., Singh, S., Marmor, R., Bonomi, L., Fox, D., … & Ohno-Machado, L. (2017). Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States. Annals of the New York Academy of Sciences, 1387(1), 73.
Zerhouni, E. A., & Nabel, E. G. (2008). Protecting aggregate genomic data. Science, 322(5898), 44-44.