Who can access our health data and how will it be used?

by Jacqueline Lee 

The rise of health data technology has potential implications for your privacy. Dr. Anita Ho, Associate Professor in Bioethics at the Centre for Applied Ethics at the University of British Columbia, and Affiliate Faculty member in the Bioethics Program of the University of California, San Francisco, explains that, to a degree, we are actually quite willing to give up our privacy. As health data companies continue to grow, as consumers, we don’t always know what we are signing up for. Dr. Ho looks at how we handle these trade-offs: How important is this information to us, and what is it really telling us?

The proliferation of mobile technology is new. Tech companies want to capitalize on users’ tech dependence, including the use of technology for health information. Currently, there are more than 100,000 apps that are related to “health issues” and are primarily developed by entrepreneurs who may or may not have health experience. Dr. Ho explains that the common counter-argument to this criticism is that these are “recreational apps,” and not “medical apps,” and therefore don’t need to be developed by medical experts or regulated.

There are more than 100,000 apps that are related to “health issues.”

However, Dr. Ho says the line is being blurred, as many companies are beginning to provide healthcare advice. For example, Facebook has a “suicide prevention” initiative that monitors user activities and connects users to resources if they believe they need professional help. This is a primary example of new technology clashing with a user’s privacy. Who is monitoring Facebook users? Do they have medical experience to select users they believe are at risk of suicide? Should Facebook be getting involved? These are the questions that need to be asked when healthcare technology becomes increasingly public.

What is the difference between diagnostic and predictive tests?

A vast majority of health data companies provide predictive testing as opposed to diagnostic testing. Diagnostic tests tell patients when they actually have been diagnosed with a particular illness whereas predictive tests tell patients if they are susceptible to particular diseases. Predictive tests can be tricky; we don’t always know the probability of a patient actually being diagnosed with a particular condition. When predictive tests are based on genetics the clinical significance of the information is questionable because there are many other factors in a person’s life such as, family history, lifestyle, and environment that can affect the probability of a patient’s susceptibility.

 What is the difference between patients and consumers?

Health data companies have achieved success with their consumer-based model. Patients are typically viewed as those seeking medical advice because they are either sick and potentially vulnerable. Consumers, on the other hand, have the same access as patients and view themselves on the same “playing field” as patients. However, unlike patients, consumers can assume as much risk as they want and can decide if they want to buy certain health technology or not. This consumer –medical-based approach has given companies the freedom to assume less risk since it is the consumer’s choice to seek out the information.

What is the difference between health information and recreational information?

Direct to consumer kits, like 23andMe, avoided the FDA’s disapproval by claiming their genetic tests didn’t provide medical information, but instead recreational information. By providing “recreational” information you are not subject to FDA approval. Such companies are lumping health information with recreational information, making it difficult for regulators to regulate health data products.

Many of our phones already include built-in health technology. For instance, the iPhone features a health app that tracks user activity unbeknownst to many owners. For Dr. Ho, our ignorance of this technology is worrying: we need to ask ourselves what implications and potential data-linkages are between our phones and the public domain. Often we don’t think critically about health based technology and are quite casual about our health information because it seems recreational. We don’t often think about the privacy implications of these apps and products because they are marketed as just for fun. Ho warns that these marketing tactics can blind us to the privacy risks we are subjecting ourselves to. 

There is a question as to whether the information we find is clinically meaningful and whether the internet democratizes medicine.

A Shift in Patient-Physician Relationship

Dr. Ho explains that some companies are actively developing technologies to diagnose patients independently of medical practitioners. What will this mean for the physician-patient relationship? In this internet age, patients can already find an abundance of medical information.  This can become problematic because patients don’t always know which sources are credible. There is a question as to whether the information we find is clinically meaningful and whether the internet democratizes medicine. The plethora of medical information online has shifted the patient-physician roles. Now the patient is taking the information to their physician. On the one hand, this shift promotes patient autonomy and the more informed you are the better decision you’ll make. On the other hand, Dr. Ho warns this autonomy is only possible when the medical information is credible and reliable.

Ethical Takeaways

We are moving from reactive to proactive medicine. With health data technology patients can be more proactive about their health. What should we be concerned about with the rise of health data technology? Dr. Ho outlines three kinds of issues:

  1. Epistemological Issues: Genetic tests alone cannot determine a user’s overall risk to various diseases. Genetic tests are not always helpful and can offer confusing results, leaving many users unsure of what to do with the information.
  2. Economic Issues: Health data technology is often unaffordable for many people. This creates a “digital divide,” by excluding lower-income people from having access to new health technology and information.
  3. Social Issues: When we consent to use health data technology we are not always aware of the extent of our consent. For example, in some cases, our private health information can be shared and circulated online for other users to explore. When technology changes so rapidly, we as users need to be more protective about what information they are giving out and how it will be used in the public domain.

Jacqueline Lee studies journalism at the University of King’s College and interned at the Canadian Centre for Ethics in Public Affairs in 2018.