Abstract
BackgroundUnderstanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy.MethodsWe 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.ResultsThe 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.ConclusionsMany 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.
Highlights
Understanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy
Biobanks have generated a range of ethical and legal challenges related to privacy, informed consent [5], control and ownership [6,7], withdrawal of samples and consent [8], commercialization, return of results and incidental findings [9], and research governance
This study aimed to explore the perspectives of patients undergoing leukemia treatment where most of the patients participated in a local biobanking project
Summary
Understanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy. Biobanks have generated a range of ethical and legal challenges related to privacy, informed consent [5], control and ownership [6,7], withdrawal of samples and consent [8], commercialization, return of results and incidental findings [9], and research governance. These issues have generated much policy debate and have already resulted in several public controversies regarding informed consent [10,11,12], commercialization [13], and control, and ownership [14,15,16]. Gaining a greater understanding of the perspectives of different stakeholders, including patients who provide biological samples and health information to biobanks can offer insight into the nature and drivers of these ethical controversies, inform policy development, and assist in public engagement
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have