Big Data, Health Law, and Bioethics

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The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference focused on “Big Data, Health Law, and Bioethics.” The conference was organized in collaboration with the Berkman Klein Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.

Conference Description

“Big Data” is a phrase that has been used pervasively by the media and the lay public in the last several years. While many definitions are possible, the common denominator seems to include the “three V’s” – Volume (vast amounts of data), Variety (significant heterogeneity in the type of data available in the set), and Velocity (speed at which a data scientist or user can access and analyze the data).

Defined as such, health care has become one of the key emerging use cases for big data. For example, Fitbit and Apple’s ResearchKit can provide researchers access to vast stores of biometric data on users from which to test hypotheses on nutrition, fitness, disease progression, treatment success, and the like. The Centers for Medicare & Medicaid Services (CMS) have vast stores of billing data that can be mined to promote high value care and prevent fraud; the same is true of private health insurers. And hospitals have attempted to reduce re-admission rates by targeting patients that predictive algorithms indicate are at highest risk based on analysis of available data collected from existing patient records.

Underlying these and many other potential uses, however, are a series of legal and ethical challenges relating to, among other things, privacy, discrimination, intellectual property, tort, and informed consent, as well as research and clinical ethics.

This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S. We expect to publish the conference proceedings in an edited volume. Keep an eye on the Petrie-Flom website or sign up for our newsletter for updates!

Agenda

Learn more! Check out many of the speakers’ slide presentations below!

8:00 – 8:30am, Registration and Breakfast

8:30 – 8:35am, Welcome Remarks

8:35 – 9:55am, Panel 1: Shifting Paradigms: Big Data’s Impact on Health Law and Bioethics

9:55 – 10:05am, Break

10:05 – 11:25am, Panel 2: Overcoming the Downsides of Big Data

11:25am – 12:10pm, Panel 3: The Internet of Things and Health Big Data

12:10 – 12:30pm, Break to Pick Up Lunch

12:30 -1:20pm, Keynote: A Data Perspective on Autonomy, Human Rights, and the End of Normality

1:20 – 1:30pm, Break

1:30 – 2:30pm, Panel 4: Protecting Health Privacy in a World of Big Data

2:30 – 3:30pm, Panel 5: Oversight of Big Data Health Research: Proposals for Improvement

3:30 – 3:40pm, Break

3:40 – 4:40pm, Panel 6: Big Data and the FDA

4:40 – 5:25pm, Panel 7: Calibrating Intellectual Property Rights for Health Big Data

5:25 – 5:30pm, Closing remarks

Learn More

Slide Presentations

• Tal Zarsky, “Correlation v. Causation in Health-Related Big Data Analysis: The Role of Reason and Regulation”

Bioethics Forum

Hosted by the Hastings Center’s Bioethics Forum.

Check out past Petrie-Flom conferences, including full video of many events, in our Events Archive!

Sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, with support from the Oswald DeN. Cammann Fund. This year’s conference is organized in collaboration with the Berkman Klein Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.