Research Participants' Rights to Access Information about Themselves Held by Public Research Institutions

Introduction The growth in longitudinal studies that involve collection and banking of personal information and biological samples from research participants over many years has generated wide-ranging analysis of associated ethical, legal and social aspects, especially issues of consent, privacy and confidentiality, handling of research findings, and benefit sharing. (1) One issue, however, that has received relatively little attention in the discussion of research databanks is the right of participants to request access to information about themselves held by researchers. Over the course of long-term study, much information about participants will be collected and recorded, including participant responses to study questionnaires and other instruments, records of physical measures, and results from analyses of blood or other biological samples that may be conducted for some studies. As discussed below, key fair information principle is that individuals ought to be able to know about and access personal information about themselves, especially information held by public institutions. Indeed, freedom of information laws across Canada codify right to access information held by public bodies, subject only to specified exceptions. (2) What is the scope of research participants' right to obtain access to information about themselves held by researchers in public institutions, such as universities? How does legislation apply to records created for research purposes? What factors should researchers consider in developing policies to handle access requests? To address these and related questions, this paper discusses the development of Canadian legal principles concerning access to personal information, focusing particularly on health information. It begins with brief overview of Canadian common law principles about access to health care records, then turns to the development of statutory access to information rules. Legislative provisions that apply to records obtained or created for research purposes are summarised and practical considerations for developing access to information policies are discussed. Canadian Common Law: McInerney v. MacDonald To open the discussion of information access rights, it is worth looking back to the 1992 Supreme Court of Canada decision in McInerney v. MacDonald. (3) This litigation concerned the common law right of patient to access records held by her physician. Dr. McInerney provided copies of records she had created, but refused to release copies of reports she had received from other physicians. In her view, those documents were the property of the other physicians and Ms. McInerney should contact them directly to request access. Ruling in the patient's favour, the Supreme Court of Canada held that patient has right to access their health care records and that physician should provide access to all records that informed the patient's treatment, including records obtained from other health care providers. The Court based this access right on the fiduciary relationship between the physician and the patient and noted that a patient has vital interest in the information contained in his or her medical records. (4) While the relationship between researcher and participant may arguably be characterised as fiduciary in limited circumstances, such as the relationship between physician-researcher and patient-participant in clinical trial, (5) the McInerney case is nonetheless notable in emphasising the importance of access to information about oneself. The nature of the information contained in research records is similar to the Supreme Court's description of information contained in medical records: at least in part, medical records contain information about the patient revealed by the patient ... Of primary significance is the fact that the records consist of information that is highly private and personal to the individual. …

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