Digital Health: An Ethical Minefield? #1
Part 1 of 3. The Perils of Privacy
In the not-so-distant future, you’ll be able to access the medical care you need at any time, from any place, tailored precisely to you. And yet, this may present a whole set of ethical challenges.
Since the advent of digital health technology, pioneering innovations have transformed clinical practice, but it poses serious ramifications. We’re currently standing at the cliff’s edge of possibility. Are we now beginning to realise what could happen as technology and health care merge in unexpected and powerful ways?
In this 3-part series, we delve into three key issues: Privacy, Cost, before discussing the some specific ethical scenarios such as life expectancy and genetic preferences.
Who has my data?
Millions of consumers have willingly submitted themselves to intensive monitoring with Orwellian connotations, generating and sharing data on virtually every aspect of their lives. People track their steps, the length of their menstrual cycles, their moods — and so do the businesses who run those tracking services. Can we still effectively regulate this data? Can we protect that information so it doesn’t become just another way to stigmatise people with disabilities and diseases?
A slippery slope
Imagine a world in which your at-home genetics test showed you were at higher risk for developing heart disease. Ideally, your health care team and insurance provider would work together to keep you updated on preventive screenings and education. But based on health insurers’ history of denying coverage for preexisting conditions, it’s also possible that the insurance provider would take one look at those results and deny coverage.
Hackers could manipulate it. Companies could use it to inform advertising or political campaigns. Among peers, it could provide fodder for bullying and discrimination.
It’s not so simple
To counteract that risk, several organisations are taking steps to protect health data. For example, the 1 million genomes that the National Institutes of Health’s All of Us project will be inaccessible to law enforcement officers — even when they have search warrants and subpoenas.
That wasn’t the case for the investigators who recently had access to DNA test results and a public genealogy database. The information they gathered enabled them to arrest the suspected Golden State Killer — the man believed to be responsible for 12 homicides, at least 45 rapes and 120 home invasions in the 1970s and ’80s in California. Although his arrest was heralded as an example of technology’s power to solve crimes, it raised concerns among scientists and consumers over who has access to the data generated by private companies like 23andme and Ancestry.com.
Security & Cybersecurity
However, even when data is expressly kept private, security dangers still exist. During George W. Bush’s presidency, potential hackers posed a serious enough threat that experts modified Vice President Dick Cheney’s heart defibrillator to prevent it from being hacked. It was an easy decision for Cheney’s medical team, but even a decade later the health care industry as a whole has been slower to act.
A 2017 survey found that nearly 36 percent of U.S. health care companies with digital health device ecosystems had experienced a cybersecurity incident in the prior year. This means a great deal of our health data is at serious risk, especially when you consider that hospitals use an average of 10 to 15 internet-connected devices per bed.
While most hackers likely aren’t interested in causing physical harm to a patient, they do hunt for vulnerabilities that give them access to medical records. They can then sell those records, use them for identity theft or use them to track, intercept and sell prescription drugs on the dark web.
What can be done
The major players in digital health are taking these concerns seriously, too. For example, the U.S.’s largest medical record software company, Epic, recently blocked third-party health developers from joining its app store, citing the safety, privacy and security of patient data.
All that health data we’re providing and collecting is a big red target for people looking to profit from exploiting it.
Digitising that information makes it possible to provide care more cohesively and efficiently, but it also makes the information more of a target. Hackers aren’t the only threat to this wealth of digital data. Society needs to enact safeguards so insurance providers can’t use health information to deny coverage for specific conditions or certain people.
Despite these potential hazards, smart medicine technology has revolutionised health care as we know it, making modern medicine safer than ever and all of us healthier as a result. It’s no wonder that this dynamic convergence of technology and medicine creates hope alongside a wide variety of ethical, legal and social issues, with profound implications for our society. There may not be an easy solution, but the challenges are a testament to smart medicine’s even greater potential.
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
