The Ethics of Health Data Sharing

Apple has recently announced ResearchKit, a platform where patients can share their health data and contribute to research by participating in medical studies. The partners of the platform, research centres and universities, have already gained access to thousands of volunteers within days of the launch, many more than such studies usually reach. While this approach promises to disrupt the way clinical trials are conducted, and contribute to the diagnosis and treatment of a range of diseases, privacy and ethical concerns for the patients remain and only increase with time as more services of the kind become available.

Mobile and wearable technologies are increasingly making it easier than ever to collect large quantities of data about their users. I have written about wearable medical devices before, which are already becoming an integral part of our daily life. Smartphones contain a large number of sensors that can monitor a person’s motion and fitness, as well as test speech and memory through the use of specialized applications. In addition, by using separate devices an iPhone or Android phone will soon be able to gather information about glucose levels, blood pressure and other data. One brilliant example is the iPhone plug-in device developed at the University of Columbia, able to test blood for illnesses in just fifteen minutes and worth only $34.

Apple is not the sole technology company entering the $3 trillion health care industry: Google, Microsoft and Samsung, as well as a wealth of smaller start-ups, are all increasing their efforts to follow suit. Some of these companies are even targeting genomics data as the cost of DNA-sequencing drops rapidly, and Google and Amazon already offer a repository system for personal DNA information. DNA contains invaluable insights into a person’s inherited risk factors to particular illnesses, as well as resistance to medications. This information can now be easily obtained through companies like 23andMe, which sequence your DNA for as little as $99.

This technology is exciting and offers consumers the ability to know more about themselves than was ever possible before. By sharing such information, patients can contribute to research that may one day find the cure for the illnesses they suffer from. However, while privacy advocates have long been concerned about the ways in which smartphones track users’ location, consumption patterns and social networks, medical data is more intensely personal and uniquely defines an individual. Mass databases of genomic and disease data—if used for good—could help with identifying the causes and symptoms of little-understood diseases. But, these benefits must be balanced against the risks involved with giving away one’s own medical information, particularly to for-profit companies such as Apple and the lot.

The moment a patient gives his or her consent, the health data recorded on the phone or device will be shared with the company and reach doctors and researchers. However, health data shared through technology companies is not legally protected as the information shared directly with doctors, and the patients effectively lose the ownership of their own health information. Should a person ever be able to give up information about his or her own body, particularly in the case of genomics data that is unique of that person?

The data shared with companies can be sold to third parties. Although companies like Apple state that they will not see the data, there remain a chance that the patient may be identified later on, and profiled for targeted marketing. If the health data is tied to one particular patient, this could even result in higher premiums on health insurance for people with a predisposition to debilitating diseases. In the worst case scenario, computer hackers may steal the data linked to specific patients, estimated to be worth many times more than financial information on the black market.

Nothing stops technology companies and medical researchers from selling the health data collected to pharmaceutical companies at a later stage. Given the mass altruism of people voluntarily donating health data for research, it may be fair if these organizations would then target major sources of human disease, rather than only illnesses that bring a large profit, and make their products accessible widely. Although idealistic, this view, brought forward by Nir Eyal, medical ethicist at Harvard University, is one that can easily be shared.

Services like Apple’s ResearchKit are set to disrupt the way we approach medical research, and undoubtedly hold the potential to make a difference providing invaluable information to aid the diagnosis and better treatment of a vast range of conditions. However, patients willing to share their health data must be aware of what this implies, understanding the risks and ethical dimensions involved. Ultimately, governments and societies should consider under what conditions, if any, they can consent to giving away their medical data. Though many developed countries have sophisticated heathcare privacy laws, as technological advancement changes the quantity and quality of information available, legislation needs to keep up to protect the patients and set the boundaries for a game that might soon become too big to control.

Giovanni Offeddu