News at Medicine - October 2009 - New directions in privacy legislation

New directions in privacy legislation
October 14, 2009
Just how important is privacy to people in Newfoundland and Labrador? That’s a question that a group of researchers at Memorial University are trying to answer. The study, headed by Dr. Daryl Pullman, professor of bioethics in the Faculty of Medicine, is titled Privacy Protection and Biobanks: A Conjoint Analysis of Priorities and Preferences of Stakeholder Groups.
Dr. Daryl Pullman

In particular, Dr. Pullman and his colleagues are looking at the type of information stored from genetic research.  “The project will examine whether individuals would be willing to provide easier access to some of the personal health information contained within biobanks in order to facilitate various kinds of health research,” he explained.

The study is funded by the Privacy Commissioner of Canada in amount of $50,000; it’s part of overall awards of $454,000 to 11 Canadian researchers groups for privacy research and awareness.

The research will be conducted on the Avalon Peninsula, where about half of the province’s population lives. A total of 300 people taken as a random sample will be involved in this study.

Dr. Pullman and colleagues recently published a paper in Healthcare Policy titled "Sorry You Can’t Have That Information." That study, funded through the Canadian Institutes of Health Research, assessed the level of awareness, perceptions and concerns of health care providers, health researchers, data managers and the general public about the collection, use and disclosure of personal health information for research purposes.

“The results indicated a poor understanding generally with regard to privacy rights and responsibilities,” said Dr. Pullman.

Other researchers involved in the former study included Dr. Sharon Buehler, honorary research professor in the Division of Community Health and Humanities, Faculty of Medicine;  Dr. Katherine Gallagher, Faculty of Business Administration; Jeannie House, director of Advocacy and Information with the Newfoundland and Labrador Health Boards Association; T. Montgomery Keough, senior researcher with the Health Research Unit in the Faculty of Medicine’s Division of Community Health and Humanities; Lucy McDonald, director of Privacy and Corporate Services with the Newfoundland and Labrador  Centre for Health Information; Angela Power, a senior privacy analyst with the provincial Department of Justice; Ann Ryan, manager of the Health Research Unit in the Faculty of Medicine; and Dr. Roy West, professor emeritus in the Faculty of Medicine.

Dr. Gallagher, Ms. McDonald and Mr. Keough are involved in Dr. Pullman’s most recent privacy study. Dr. Holly Etchegary, a clinical research professor in the Faculty of Medicine, and Catherine Street from the Population Therapeutics Research group of the Faculty of Medicine, round out the current research team.