Author(s): Master Z, Claudio JO, Rachul C, Wang JC, Minden MD,
Abstract Share this page
Abstract BACKGROUND: Understanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy. METHODS: We examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1\% response rate) followed by a follow-up survey (62.5\% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust. RESULTS: The majority (59.6\%) preferred one-time consent, 30.3\% desired a tiered consent approach that provides multiple options, and 10.1\% preferred re-consent for future research. When asked different questions on re-consent, most (58\%) reported that re-consent was a waste of time and money, but 51.7\% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2\%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98\%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3\% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2\%) stated that the research institution owns the samples whereas 19.4\% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies. CONCLUSIONS: Many cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.
This article was published in BMC Med Genomics
and referenced in Journal of Clinical Research & Bioethics