Data risks
Identifying and protecting sensitive data matters, because it can directly affect how we are treated by institutions and other people. With big data analytics, countless day-to-day actions and decisions can ultimately feed into our health profile, which may be created and maintained not just by traditional healthcare providers, but also by tech companies or other entities. Without appropriate laws and regulations, it could also be sold. At the same time, data from the Internet of Bodies can be used to make predictions and inferences that could affect a person’s or group’s access to resources such as healthcare, insurance and employment.
James Dempsey, director of the Berkeley Center for Law and Technology, told me in an interview that this could lead to unfair treatment. He warned of potential discrimination and bias when such data is used for decisions in insurance and employment. The affected people may not even be aware of this.
One solution would be to update the regulations. Sandra Wachter and Brent Mittelstadt, two scholars at the Oxford Internet Institute, suggest that data protection law should focus more on how and why data is processed, and not just on its raw state. They argue for a so-called “right to reasonable inferences”, meaning the right to have your data used only for reasonable, socially acceptable inferences. This would involve setting standards on whether and when inferring certain information from a person’s data, including the state of their present or future health, is socially acceptable or overly invasive.
Practical problems
Apart from the concerns over privacy and sensitivity, there are also a number of practical problems in dealing with the sheer volume of data generated by the Internet of Bodies. The lack of standards around security and data processing makes it difficult to combine data from diverse sources, and use it to advance research. Different countries and institutions are trying to jointly overcome this problem. The Institute of Electrical and Electronics Engineers (IEEE) and its Standards Association have been working with the US Food & Drug Administration (FDA), National Institutes of Health, as well as universities and businesses among other stakeholders since 2016, to address the security and interoperability issue of connected health.
As the Internet of Bodies spreads into every aspect of our existence, we are facing a range of new challenges. But we also have an unprecedented chance to improve our health and well-being, and save countless lives. During the COVID-19 crisis, using this opportunity and finding solutions to the challenges is a more urgent task than ever. This relies on government agencies and legislative bodies working with the private sector and civil society to create a robust governance framework, and to include inferences in the realm of data protection. Devising technological and regulatory standards for interoperability and security would also be crucial to unleashing the power of the newly available data. The key is to collaborate across borders and sectors to fully realize the enormous benefits of this rapidly advancing technology.