Privacy law freezes health research in British Columbia

The Vancouver Sun is reporting that recent amendments to BC's privacy laws are making it difficult for researchers to recruit participants:

Privacy law freezes Health research

Numerous B.C. health studies are not proceeding, languishing on hold or facing long delays because privacy legislation prevents researchers from actively recruiting participants.

A sample of taxpayer-funded studies actually or potentially affected by the legislation include ones on Parkinson's disease, back injuries, prostate cancer, breast cancer, ovarian cancer, multiple myeloma, and the quality of life and health-care needs of childhood cancer survivors.

Scientists say the problem is a 2003 amendment to the B.C. Freedom of Information and Protection of Privacy Act prohibiting government from releasing information to scientists for the purpose of contacting individuals about participating in research.

Previously, the legislation allowed the government to disclose contact information to research scientists, without the consent of individuals, as long as confidentiality was protected.

The reasons for the amendment are not clear, but prior to 2003, scientists were allowed to collect a random sample of names from data banks such as the Medical Services Plan (MSP) registry and election lists to recruit control subjects for studies.

Medical studies have yielded important findings and led to major shifts in human behaviour, such as smoking cessation, more exercise and dietary changes....