With the abundance amount of people that recently have gotten wearable watches the increase in the health data collected is huge. Michelle De Mooy and Shelton Yuen in this discussion talk about ethics and privacy in wearable data research. CDT is a champion of global online civil liberties and human rights, driving policy outcomes that keep the internet open, innovative and free. HIPPA is a disclosure law that lets you know when you are allowed to release information, however it does not include wearables. CDT created a partnership advocacy organization with the well known Fitbit, which was ground breaking news. Fitbit has all this data but wanted to use it without breaking the privacy of the users.
Privacy questions in regards to when data collected from fit bit will be used was discussed. Data is not inanimate it is a detailed story about our bodies past, present and future. How a story is told depends on the person, the device and even by what one thinks of the health information. When data is collected it is painting a picture of that individual. The concept of wearables and data with Fitbit have blurred lines on what is okay to share and what is not. Is your data gathered on a Fitbit private or not?
The data gathered by Fitbit from users can be used to understand human health and behavior through biometric data. Fun fact on average men sleep 15 minutes less than women a night. With the helpful data from wearable show it will allow one to know if a previous nights good sleep will affect that days run. Fitbit is trying to brainstorm and implement ways that privacy from users on their health information will be marketed correctly. As a company Fitbit has a mission to improve the health of people and encourage them to be more active through data collected.
This partnership was created on the foundation of engaging with the researchers. The approach was really interesting because all these researchers for Fitbit had a background in IRBs with higher level education. So because of this, they were aware of the Institutional Review Board and could ask ethical questions about the research.
What kind of user data is most used? There is a two way approach to this project:
- Hacks: which is a crucial way to innovate. They want others to say “I think we should try this lets try that.”
- Project break down into the user data you get people to see if you can track information.
- Fitbit user data is from Fitbit employees that volunteer to participate.
- Pilot setting:
- The way the data is used is very personable because employees are the ones to collect the user data. They ask themselves questions like, “If I use this data, who would I want to see the data?” What would the users care about relating to how Fitbit maintain its privacy.
The findings of this partnership is that CDT continues to have: ( practices, policies, framework); tools (studies, hacks, framework); ethical and privacy challenges (employees); recommendations (dignity, stewardship & social good); and learning (map internal process, find the pivot points where one should ask questions and where is it ethical for you to do so). Finding a new way to be thinking about dignity combines privacy and ethics so one should have a choice on how the data is to be used internally. In addition, the recommendations break down into three categories. I learned that you need to be given a re-numeration where you give something to the participants illuminating that the process of that participation is voluntarily; for example a gift card with a responsive amount. Operational stewardship emphasized the need for policies to have a document of what Fit bit is doing. Third the community of social good is where the ethical components that reflect our community matters because if one is looking at data from a group of people and excluding another group, there might be inferences made that are inaccurate.
Then Michelle went on to discuss that IRB in Fitbit is based on ethics, if its making a new sensor to determine heart rate is high. However, when will fitbit data used to let others know that they should possibly get a health check up be crossing user privacy? This will allow one to be able to discover physiological data not have known previously. It is similar to the case where the husband knew the wife was pregnant before the wife did because of the Fitbit data collected.
There is a continued argument of data because given it is anonymous who really owns the data if it is not identifiable.
“Ownership does not work in this context. Control is important because knowing where your data is going and how to control that is very vital. A very clear privacy statement is given to the users so they are completely aware,” Yuen said.