Speaker: Mark Rothstein (Herbert F. Boehl Chair of Law and Medicine and Founding Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine)
Bio: Rothstein has a joint appointment at the Brandeis School of Law and the School of Medicine. He holds the Herbert F. Boehl Chair of Law and Medicine and is the Founding Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine. He joined the University of Louisville faculty in 2001.
Rothstein has concentrated his research on bioethics, genetics, health privacy, public health law and employment law. From 1999-2008, he served as Chair of the Subcommittee on Privacy and Confidentiality of the National Committee on Vital Health Statistics, the statutory advisory committee to the Secretary of Health and Human Service on health information policy. He is past president of the American Society of Law, Medicine and Ethics. He serves as Public Health Ethics Editor for the American Journal of Public Health, and he writes a regular column on Bioethics for the Journal of Law, Medicine & Ethics. Additionally Rothstein has authored 19 books and over 250 articles on his areas of research.
Abstract: Mobile devices, including smartphones and tablets, increasingly include apps that collect health information, such as heart rate, blood pressure, blood sugar and other measurements. At the same time, “citizen scientists” have begun engaging in health research. Independent researchers as well as patients and their family members can take advantage of direct-to-consumer genetic testing, patient access to their electronic health records, social media that link individuals with similar health conditions and powerful computer algorithms that can search through numerous and diverse sources of data. The federal government does not fund this type of research and therefore it is usually not subject to any regulation.
This talk will focus on key ethical issues, including informed consent, privacy and return of results, when unregulated researchers undertake health research with mobile devices.