|Jayun Bae – ROP299Y 2016-17
My name is Jayun Bae and I am completing my second year in the Neuroscience and Bioethics majors at the University of Toronto, St. George. I was a 2016-2017 Research Opportunity Program (ROP) student in Dr. Pascal Tyrrell’s lab, working on a study that investigated the ethics of sharing patient data with private organizations (see my timeline above). I am a member of the Hart House Debating Club and an events associate for the Life Science Student Network.
My ROP project was necessitated by the partnership proposed by the Medical image Networking Enterprise (MiNE) that would establish a data-sharing relationship between public and private sector organizations. The ethical concerns with the partnership involved patient consent, privacy, and financial gain – but there were also issues that I
uncovered throughout the project. It quickly became clear that the answers could not be found through an examination of precedence or legal documents, because many of the research actions that would take place (specifically involving private organizations) fell in the grey area between what was legal and what was ethical. For example, the Personal Information Protection and Electronic Documents Act (PIPEDA) and Personal Health Information Protection Act (PHIPA) are two guidelines for organizations to follow when handling patient data – but neither are able to clearly and positively dictate how this partnership should operate.
Therefore, I developed a study that would seek expert opinions through the administration of a survey. I conducted interviews at Sunnybrook Health Sciences Centre and the University of Toronto and performed qualitative data analysis. My ROP project was presented at the ROP Poster Fair and the Victoria College Research Day events. The ROP was an extremely valuable experience in gaining research skills, and I’m grateful to
Dr. Tyrrell for the guidance and mentorship. The project is not yet completed, so I am looking forward to continuing the study beyond the scope of the ROP. Please have a look at my poster from the 2017 ROP Research Day below:
Today, it may seem obvious that the first step of any research project should be to complete a proposal for ethics review. But why do we need ethical standards? While helping to complete an ethics form for a project I’m working on, I wondered if scientists perhaps made more ‘progress’ before ethical considerations became commonplace. Even if this was the case, research is certainly better now, when institutions and procedures protect patients’ and research subjects’ rights.
It also seems that scientific research in the 18th and 19th centuries tended to be somewhat more haphazard than it is now, and almost certainly less ethical. For example, Dr. Edward Jenner tested his smallpox inoculation hypothesis for the first time on an eight-year-old
boy in 1796, with little preliminary understanding and no certainty that the patient would not be severely harmed.
Scientists were often fairly independent, acting based on their own curiosity to advance knowledge. Fortunately, research standards have evolved significantly since then. Ethics have been a major part of the transition, as ethical standards help to ensure that scientific research does not cause harm to researchers or subjects. The shocking Stanford Prison Experiment, just one example, shows that physical and psychological damage can occur if study participants’ rights are not upheld through ethics. College students with no criminal record were asked to play the role of prisoners and prison guards, the ‘guards’ became brutal and cruel, while the ‘prisoners’ became stressed and depressed. The experiment was terminated early, after only six days.
Fortunately, much has changed since the emergence of modern science in the 20th century. The current structure of research, including working in teams and undergoing peer review, helps to ensure a high standard of practice. Nevertheless, ethical issues in science remain. Researchers who work with human participants can become quite focused on the minutiae of their work, so Research Ethics Boards have an important mediating role. They provide an experienced, unbiased viewpoint that weighs the potential benefits of the research against any harm that may come to participants. Even if an ethical review sometimes slows the pace of scientific progress, it provides an essential foundation and structure for research, to the benefit of participants and researchers alike.
2nd year student at U of T