Big Data: Privacy & Data Security Law Update

Several of my colleagues and I are attending the Eighteenth Annual Institute on Privacy and Data Security Law today and tomorrow. One topic that has everyone's attention is the promise of big data. University of Pennsylvania Law School professor Anita L. Allen's presentation is riveting. She is a prolific author in this area of law.  If you have interest in this topic, you definitely need to read Ms. Allen's recent Harvard Law Review Forum article "Protecting One's Own Privacy in a Big Data Economy".

How is the US government using big data and healthcare? One of the US government's goals is to create better healthcare through precision medicine.For example, 1 million Americans will "volunteer" their health records (including DNA) to create an NIH database capturing personal data, analyzing data, finding patterns and designing interventions. The goal is to capture a very diverse slice of Americans. 

There are tremendous ethical issues involved with collecting this type of health data.

What are the risks related to big data? Use of big data implicates civil rights and constitutional civil rights. As private industry and our government use big data, we can anticipate increased surveillance, privacy invasions, data breaches, discrimination, unfairness, and loss of control and abrogration of human responsibility to (fallible) machines and algorithms. Several privacy watchdog groups are monitoring big data developments, including the ACLU and EPIC (Electronic Privacy Information Center, as well as the Center for Digital Democracy, Future of Privacy and Electronic Frontier Foundation.

Sure we have HIPAA, but it is naive to think that HIPAA is going to be the solution for health care data protection and privacy.  Typical consumers and internet users do not understand the extent to which their activities generate data that is collected, analyzed and put to use for both governement and business purposes. The biggest takeaway from Ms. Allen's presentation is to start following these watchdog groups and become educated on the weaknesses and risks facing your privacy. Think about using a VPN on your phone or laptop when you are at Starbucks. And at home, remember that Alexa is listening!