Ethical Considerations of Rare Disease Patients: The Benefits of the Private Sector

Following the lecture on research ethics and in particular my question regarding ethical obligations as they pertain to the medical data of international subjects, I began to worry. My concern was that according to the Research Ethics Board (REB), I may have to gain research approval by some ethics body. What I quickly realized following the lecture was that my case and site of analysis is interesting because it is not subject to the same medical privacy laws. In a patient-practitioner relationship, the practitioner is subject to strict privacy laws. For example section 33 of the Personal Health Information Protection Act prohibits health custodians from collecting marketing data for marketing purpose. When the health custodian is removed from the transaction, and the patient provides that data, marketing use of personal health information is permitted.

This shift of control and information usage raises some important questions regarding patient attitudes regarding personal revelation. I found it interesting that a question regarding ethics directly strengthened my claimsmaking or "so what" claims within my proposal.