Digital Health: An Ethical Minefield? #3
As digital health tools and devices seamlessly integrate with our everyday lives, one overarching issue transects all other concerns: ethics. Who makes the rules about issues like how long people should live and work? Which medical procedures qualify as “vanity,” and which are “necessary”?
Having discussed Privacy and Cost previously, let’s take a moment to consider some of the implications in specific cases.
Life Expectancy
Want to live longer? Consider the ethics.
How long should people live and work, and what impact will our life spans have on our economies and communities?
Improved hygiene, antibiotics and vaccines already have extended our life expectancies compared to our ancestors. Now technology is letting us go even further.
Google has founded a company named Calico to develop ways to extend life, and billionaires Jeff Bezos and Peter Thiel have invested in Unity Biotechnology, which focuses on preventing age-related diseases. But as we create ways to ease aging and extend life, we face logistical challenges — mainly, how to afford these longer lives and decide who gets access to the health care that makes it possible. With more people living longer, we also run the risk of overpopulation and resource shortages.
But if we’re able to keep people healthier and working longer instead of being cared for in nursing homes, society stands to benefit. In purely economic terms, one study proposes that delaying aging by as little as two years could save $7.1 trillion over a 50-year span.
Genetic Preferences
Technological advances are making it possible to fix our defects at the cellular level. But it will take conversations between scientists, bioethicists, legal scholars and the general public to determine which attributes should be corrected and which should be embraced as differences. Should we establish boundaries in case science goes too far, to the detriment of either the individual or society?
The National Academy of Sciences took a stance by convening a panel of experts to develop guidelines for genome editing. They prohibit any use of the technology to create “designer babies” or for “enhancement.” That means technology could be used to correct the genetic defect underlying muscular dystrophy but not to build up a person’s muscle so he or she could become an Olympic athlete.
Scholars engaged in mobile health, wearable technology, big data and telemedicine are having similar discussions. Their goal: to decide what constitutes “the greater good” and ensure that work in these fields contributes to that end.
Access and Education
How do we ensure that everyone has equal access to the technological innovations that can improve their lives?
The single father working 12-hour shifts to pay for basic health care coverage deserves the same level of care and resources available to the wealthy entrepreneur who can afford a platinum health plan.
However, access goes hand in hand with education. People need basic health literacy and information-gathering skills so they can know which questions to ask about their care, especially regarding treatment options.
The saying “you don’t know what you don’t know” definitely applies here. If you don’t know a certain treatment or screening test exists, you won’t know to inquire about it in the case that your health care provider has overlooked it.
These are just a few of the ethical questions that the evolution of digital health forces us to face. Connected tools are already improving our lives, and they have immense potential to do even more, from making health care more efficient to alleviating the suffering caused by disease.
Facing these ethical questions together as a society will make us stronger. We all could be — and should be — the questioners, thinkers and decision makers who guide the ethics of digital health into the future.
About the author
Clara Chen is a first year medical student at the University of Cambridge, with a particular interest in the application of digital technology to empower healthcare provision. In the future, she hopes to combine medical practice with clinical academia, alongside improving quality of care with accessible and personalised digital medicine. Aside from her studies, Clara enjoys spending her free time playing music, reading, running, and cooking!
References
- Aicardi, Christine et al. “Emerging ethical issues regarding digital health data. On the World Medical Association Draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks” Croat Med J. 57(2): 207–213. April 2016.
- Nebeker, C., Torous, J. & Bartlett Ellis, R.J. “Building the case for actionable ethics in digital health research supported by artificial intelligence.” BMC Med 17, 137. 17 July 2019
- Caroline Brall, Peter Schröder-Bäck, Els Maeckelberghe. “Ethical aspects of digital health from a justice point of view” European Journal of Public Health, 29:3(18–22) October 2019
- Caiani E. “Ethics of digital health tools” European Society of Cardiology, e-Journal of Cardiology Practice 18:27. 8 July 2020
- Rich, E., Miah, A. and Lewis, S. (2019), Is digital health care more equitable? The framing of health inequalities within England’s digital health policy 2010–2017. Sociol Health Illn, 41: 31–49. https://doi-org.ezp.lib.cam.ac.uk/10.1111/1467-9566.12980
