The Ethics of Digital Health Add to reading list

The Grand Paradox: Cost Challenges and Privacy Concerns

Humans now have the potential to alter our biological trajectory by harnessing technology to wipe disease from the face of the earth. However, alongside that ideal picture we also face realistic concerns such as cost and privacy—concerns that could turn into intractable problems.

All that health data we’re providing and collecting is a big red target for people looking to profit from exploiting it.

Digital health advocates and critics are focusing on issues surrounding cost and access, privacy and security, and morality. 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.

In terms of cost, it’s possible that digital health’s most life-changing tools could be accessible only to the most powerful and wealthy, further widening the divide between the haves and the have-nots. It’s up to all of us to make sure that doesn’t happen.

Let’s take a closer look at these three key issues, which directly affect all of us.

The Cost of Digital Health

In the United States, health care is expensive, and everyone worries about it—including people with insurance. A recent survey found that among those facing problems with medical bills, almost identical proportions of insured (44%) and uninsured (45%) respondents said the bills were having a major impact on their families.

In the United States, health care is expensive, and everyone worries about it—including people with insurance.

The survey also showed that 20 percent of working-age Americans had trouble paying medical bills in the past year, and 63 percent of people with health insurance who had medical bill problems had used up most or all of their savings. To pay off their medical debts, 42 percent either worked more hours or took on another job.

Technology increases accessibility and cuts costs (to the tune of $300 billion, according to Goldman Sachs projections), but big questions remain. Will new technologies drive down some costs while increasing others? Will digital health increase usage of health care, which would increase overall spending but also possibly improve health outcomes? And how are these questions unique to digital health in particular, compared to health care spending in general?

The answer to that last question comes down to potential. Digital health holds an immense amount of promise for our health care system. Picture an ideal world in which nanotechnology brings medical care to rural communities in a sustainable way. Mobile monitoring ensures that people take their medication. Telemedicine helps eliminate unnecessary hospital visits and improves overall health care system function.

Investors see that potential. In 2017, they infused nearly $6 billion into digital health companies, which are aiming to foster greater connectivity, patient engagement and coordination with providers. But the companies have primarily failed to show they can make a difference to high-cost populations.

A 2019 study in Health Affairs examined the 20 top-funded private U.S.-based digital health companies. The researchers found that less than one-third of the companies’ studies focused on high-cost, high-burden populations, and few measured their impact on outcomes, cost or access. One potential cause: Digital health companies tend to sell directly to consumers, promoting health among healthy populations.

Essentially, we’re awash in technology with great promise, but we still don’t know how effective it is among those who might benefit from it the most.

One thing we do know about is cost. Precision medicine, for example, is a form of digital health—and so far its costs are skyrocketing. Targeted treatment for breast cancer can cost thousands of dollars per month, while gene therapy to cure hemophilia comes with a $1.5 million price tag. The availability of such treatments speaks to how far we’ve come technologically, but it also raises the question of who gets access to them.

Health care costs are a frustrating challenge, despite the technology’s great potential.

Health care costs are a frustrating challenge, despite the technology’s great potential. Nevertheless, optimizing digital health to make medical care affordable to everyone across society will benefit all of us in the long run. We have to cut through the debates and ensure that people’s needs are truly being met in an economically sustainable way.

The Perils Facing Health Care Privacy

Just as important as cost is the issue of privacy. 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 protect that information so it doesn’t become just another way to stigmatize people with disabilities and diseases?

Even before health information went digital, extensive health care privacy laws protected patients’ information.

Even before health information went digital, extensive health care privacy laws—such as every HIPAA document you’ve ever had to sign in a clinic or doctor’s office—protected patients’ information, setting limits on who could access it and how. Digitizing that information makes it possible to provide care more cohesively and efficiently, but it also makes the information more of a target for people who specialize in cracking digital codes to get what they want.

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.

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.

Unfortunately, people often readily share their data without thinking through the potential consequences.

Unfortunately, people often readily share their data without thinking through the potential consequences. Hackers could manipulate it. Companies could use it to inform advertising or political campaigns. Among peers, it could provide fodder for bullying and discrimination.

To counteract that risk, several organizations are taking steps to protect health data. For example, the 1 million genomes that the National Institutes of Health is compiling for its 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.

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.

Hospitals use an average of 10 to 15 internet-connected devices per bed.

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.

Despite these potential hazards, smart medicine technology has revolutionized 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.

An Ethical Dilemma

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”?

Let’s take a moment to consider some of the implications.

Life Expectancy

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.

Deciding Together

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.

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.