Privacy and Access to Genetic Research Data
New applications of genetics accompanying the mapping of the human genome trigger privacy concerns. Several factors justify particular attention being paid to the consequences of using genetic information outside the context of health care. The combination of the technological aspects of genetic research, particularly the computational nature of the research, the storage of the information in one small sample, and the amount of data generated, as well as its implications for family members and members of ethnic and community groups have been cited as among the most important reasons for further legal and ethical scrutiny.
A combination of three new approaches to genetic research and applications of genetics in the health care context, along with recent technological developments, justify a renewed attention to the privacy implications of the spread of genetic information. These new approaches are: 1) increased attention paid to the importance of conducting long-term and broad population-based genetic research; 2) increased emphasis in all areas of research on the need to provide access to scientific data to promote scientific integrity; and 3) the development of whole genome scanning, or the mapping of the human genome of individual people, resulting in an increased ability to obtain detailed genetic and risk information on individuals from one sample. These new developments, which are accompanied and some in fact enabled by new developments in genetic technology, all have a public interest component. At the same time, they raise increased concerns about the protection of individual privacy.
“Privacy and Access to Genetic Research Data” will support the work of three research assistants under the supervision of Professors Trudo Lemmens and Lisa Austin of the University of Toronto, Faculty of Law, and with input of experts from the scientific community. This research project will engage in a renewed analysis of the ways in which public interests in medical research are evaluated and measured against the individual interest in protecting privacy from two perspectives: 1) the researchers will review and analyze the available research exceptions in privacy legislation. They will examine, for instance, how the public interest represented in the procedures that are set up to evaluate whether usual informed consent requirements can be waived; 2) the researchers will review and analyze decisions that have been made in the context of access to information law, to determine whether access to information law could provide a useful approach to balancing public and private interests in the context of genetic research.
The work of the research assistants will result in a final report, in three co-authored research papers, and in the draft guidelines on privacy and transparency of research results in the context of genetics. The Centre for Innovation Law and Policy will host a workshop bringing together experts in privacy and access to information, research ethics and genetics in order to discuss the issues raised in the course of the research. At this workshop, students and faculty members will discuss their findings and engage in discussion with genetic researchers, members of Research Ethics Boards (REBs) and representatives from the funding agencies. All of the results will be made publicly available.
To view the announcement of awards from the Office of the Privacy Commissioner of Canada, please visit http://www.privcom.gc.ca/media/nr-c/2008/nr-c_080623_e.asp