Recently, I signed on to Facebook and found that my daughter had tagged me in a picture she took of me relaxing at home slouched on the couch holding a glass of wine. It was nothing scandalous, and I don’t mind that my daughter posted it.
On the other hand, it made me bit uncomfortable to think of that picture being available for the whole world to see. I therefore untagged myself. (For the sake of staying focused on the topic at hand, I am skipping the part about how difficult it was for me to figure out how to remove my name from that picture.) When it comes to Facebook, my daughter and I have different perspectives on privacy.
This is a tiny and trivial example of a major issue in today’s world. The incredible speed of advances in computer technology and enhancements in our ability to collect, store, share, and utilize data, have led to complex challenges for how access to that information should be controlled. The news is full of stories about hackers downloading very private photos of celebrities or personal financial information from corporate sites, as well as government surveillance that may be aimed at protecting the “homeland” but could also be used for other purposes. Many of the questions now being discussed at length, often categorized under the word “privacy,” were unimaginable just a few years ago. How to control and use such data requires us to consider how the information is protected and controlled, and how to balance a person’s privacy with how access to the data may be for the common good.
Cancer research is not immune from this debate. Research that is dependent on big data unquestionably contributes to progress in cancer research. Molecular analysis and clinical information from large numbers of cancer patients help us determine what approach is most likely to work for future patients.
At the same time, each patient has the right to control whether or not his or her private medical information can be used for research. The underlying principle that guides use of data for cancer research is that patients get to decide whether or not we can use their data. If a patient provides consent to have their information used for research, that patient should be comfortable that the information will be protected and only used for the purposes they have approved. Fortunately, the vast majority of patients (in our experience more than 98%) understand the importance of such research and provide us with consent that allows us to use their data for research.
Cancer research is moving so fast it is hard to know what type of research might be beneficial in the years ahead. Going back to all patients to get a separate consent every time we want to use their data to study something new and promising would be such an administrative burden on researchers that it would prevent ideas from moving forward. We therefore obtain consent from patients to use their data for both current and future research projects, with the understanding that the patient has the right to tell us to “untag” their data and remove it from the research database any time they choose. This is an important safeguard, but is used very rarely. Less than 0.2% of patients who provide consent to participate in the research subsequently request that we stop using their data for research.
This common sense approach to dealing with big data for cancer research allows us to use patient data for research, but only after we obtain consent from patients, promise to protect the information and offer patients the opportunity to change their mind if they decide that they don’t want us to use their samples for that research. We believe this provides an excellent balance between privacy and the common good.
Now, in order to be sure I practice what I preach… If someone can convince me there is societal value to having my name linked to the Facebook picture of me slouched on the couch with my wine glass, I would be happy to tell my daughter to put the tag back on the picture so all the world can benefit.