Patient Privacy Rights

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2016 Awardee

Professor Joe Cannataci, United Nations Special Rapporteur on the right to privacy

2015 Awardees

Alex "Sandy" Pentland, MIT, Advisor UN Secretary General’s Office, World Economic Forum

Dr. Masao Horibe, Chairman Specific Personal Information Protection Commission, Government of Japan

2014 Awardees:

Latanya Sweeney, Chief Technologist; Federal Trade Commission
Peter Schaar, Chairman; European Academy for Freedom of Information and Data Protection (EAID), Germany

2013 Awardees:

Peter J. Hustinx

Peter Hustinx served as the European Data Protection Supervisor (EDPS) from January 2004 until 2014, contributing to the building of the new supervisory authority and developing its role at community level. He was reappointed for a second five-year term of office in January 2009. Prior to his appointment as EDPS, Mr. Hustinx worked as the President of the Dutch Data Protection Authority as from 1991. Between 1996 and 2000, he was Chairman of the Article 29 Data Protection Working Party. His long standing experience in the field also extends to the broader European level; covering work as an expert in the Committee which prepared the Council of Europe Convention on data protection (No. 108). He also has data protection experience from the law enforcement field, having been Chairman of the Appeals Committee of the Joint Supervisory Body of Europol, and Chairman of the Commission for the Control of Interpol’s Files.

Mark A. Rothstein

Mark A. 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. He received his B.A. from the University of Pittsburgh and his J.D. from Georgetown University. Professor 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 and Health Statistics, the statutory advisory committee to the Secretary of Health and Human Services 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.

2012 Awardees:

The Honorable Joe Barton, U.S. Representative for Texas’s 6th Congressional District

Congressman Joe Barton of Texas has diligently worked to protect individual privacy rights. As a founding co-chairman of the Congressional Privacy Caucus, he works to preserve the financial and medical privacy of Americans and has been at the forefront of consumer protections for online safety and protections for data privacy and security in the ever-expanding Internet universe. Barton’s leadership was instrumental in passing the HITECH Act and the inclusion of key new health data privacy and security protections for all consumers and patients. He personally championed the ban on the sale of protected health information without patient consent in HITECH.

The Honorable Ed Markey, U.S. Senator for Massachusetts

Congressman Markey is a national leader on technology policy and consumer protection. He served for 20 years as Chair or Ranking Member of the Subcommittee on Telecommunications and the Internet where he was the principal author of many of the laws now governing our nation’s telephone, broadcasting, cable television, wireless, and broadband communications systems. Additionally, he is one of the earliest and strongest leaders for health privacy rights. As Congress began to grapple with the lack of health privacy, he authored model federal legislation known as the TRUST Act, setting a high bar to address gaps in HIPAA. As HITECH was being drafted, he was instrumental in assuring the inclusion of key new health data security and privacy protections for all consumers and patients. He personally championed tough new data security protections requiring technologies like encryption to render data unreadable.

Ross Anderson, PhD, University of Cambridge Computer Laboratory

Ross Anderson is a Professor of Security Engineering at Cambridge University and the leading health privacy advocate in the UK. He has been involved in medical safety and privacy for many years having been an adviser to the British Medical Association and the Icelandic Medical Association in the mid-1990’s; chair of the Foundation for Information Policy Research, the UK’s leading Internet policy think-tank, since 1998; and a Special Adviser to the UK Health Committee’s inquiry into the Electronic Patient Record. He has worked tirelessly to press for effective health data privacy and security in the NHS, and his research, such as the report called “DataBase State,” has been very influential in the EU and US.
Alan F. Westin, PhD,  Advisor, Arnall Golden Gregory, Atlanta and Washington DC;  Professor of Public Law and Government Emeritus at Columbia University

Alan F. Westin TributeWe were deeply saddened by the loss of one of our greatest privacy heroes, Mr. Alan F. Westin, the “father of modern day privacy” and the nation’s most respected academic authority on public attitudes toward health privacy. We are grateful to have had the opportunity to honor him and his tremendous work as one of PPR’s first Louis D. Brandeis Privacy Award recipients in 2012. He truly was a remarkable man whom we will miss dearly, though we know the extraordinary contributions he made to the field of privacy law are everlasting.

Dr. Westin was a leading authority on consumer-privacy public opinion surveys, and in understanding and interpreting the privacy attitudes of the Americanpublic. He worked with Louis Harris & Associates (now Harris Interactive) and Opinion Research Corporation (ORC) on over 60 national privacy surveys since 1978. Dr. Westin was the author or editor of 26 books on constitutional law, civil liberties and American politics, and privacy. He was the nation’s most respected academic authority on public attitudes toward health privacy. For over two decades his extensive, thoughtful surveys and body of work on health privacy have been the sine qua non for understanding the American public’s views about personal control over health information in electronic healthsystems, the trustworthiness of electronic systems, who patients trust to control the use of personal health information, research use of health data without consent, and how vulnerable populations view electronic health systems and data privacy.