Half of participants felt that each person must consent to allow his or her data to be used in research

Most were against private companies’ obtaining data without individual consent

Most said that even deidentified data should not be sold to private companies without consent

Deidentification was believed by most participants to be the removal of name, social insurance number, date of birth, address, health card number

Some participants felt that the loss of privacy is an acceptable sacrifice for the prospect of benefit to the larger population

Most participants felt that conditions under which individuals provide consent ought to be respected (e.g., use of data for health research v. marketing purposes)

All providers felt that receiving health information is a privilege given its highly sensitive nature

Some participants accepted allocation of health resources via computerized output

Half felt it inappropriate to delegate responsibility to computers

One provider likened delegation of responsibility to computers to inappropriate treatment; the other providers advocated for shared decisions

Some participants indicated media as a key mechanism for accountability

Some participants indicated skepticism that institutions and companies could be held accountable

Most participants accepted that mistakes happen

All stressed the need for transparency, disclosure and reparations

Some felt that transparency and publication prevent others from repeating the mistake

Most participants felt that health care institutions are highly trusted organizations

Most participants felt that physicians and other health care providers are entrusted with carrying out research with health data

Some participants felt that the public had a duty to be involved in research in some way

Most were unsure how specifically to have a voice in medical research