Video Interviews

In order to consider what the potential ethical implications of CRISPR, we narrowed our focus to human gene editing in the healthcare system. To implement this technology into mainstream healthcare use is a huge feat with many ethical roadblocks. We quickly realized that the only way to fully consider these issues was to hear from those with experience both in the area and with the community. Essentially, we wanted to work with professionals who have significant ties to the community, the science or both. In doing this we chose to format our research through filmed interviews. We identified key experts that could provide insightful commentary on the current state of science and public opinion. In the end, we interviewed nine professionals with different backgrounds ranging from medicine, engineering, Religion and Advocacy. Each of these areas had a specific relevancy to the questions we would pose and as such we felt it was incredibly important to speak with them.

Medicine

For the field of medicine we had the opportunity to interview Dr. Ronald Cohn, the chief of pediatrics at Sickkids hospital. This was an important interview as he was able to give the perspective of a medical professional in the face of new and extensive technologies.

Engineering

Interviewing engineers Dr. Hai-Ling Cheng, Dr. Rodrigo Fernandez-Gonzalez and Dr. Laura Prochazka was integral to considering the technical issues of our design. We incorporated their understanding of CRISPR-Cas9 into the technical aspect of our project. To further understand the considerations needed for Human Gene Editing we benefited from their insights on the subject.

Religion

We chose to include religious perspectives because religion can play an influential role in individual lives especially where important personal decisions will be made. This is a factor that cannot be ignored especially when trying to address the extremely personal nature of this type of healthcare. We went in wondering how major religions view gene editing and how this may influence individuals who follow those religions. We were lucky enough to have extensive conversations with Dr. Christopher Brittain, the Dean of Divinity at the University of Toronto and Rabbi Michael Stroh and Rabbi Aaron Greenberg, two Rabbis active in Toronto.

Advocacy

Interviewing representatives of advocacy groups was one of the most important aspects of our video series. Capturing some of the prevailing thoughts in the disability rights community was essential to addressing some of the major concerns with gene editing. In conversing with well known disability rights advocates Alice Wong and Anita Cameron they helped us to see a different side of things. Often talk of gene editing can get muddied with technicalities and what seems to be the ‘right thing to do’. This however is not always clear when we think about how it affects the disabled community; which is full of people who take pride in their disabilities and have no desire to change anything. It was through these interviews that we truly got a sense of what it means to live in this world with a disability and how hard people must fight for their right to be included in debates.

Of the questions we asked we hoped to gather a clear perspective of how the community currently feels towards gene editing. In gathering these responses we have created a framework which may be referred to and considered when before gene editing begins. While we could not solve such problems on our own the process of acknowledging where the public is at is incredibly important. The only way to create a secure regulatory framework for gene editing is to ensure the major ethical concerns have been thoroughly discussed, acknowledged and problem solving has been initiated. By doing this we only then can we move towards implementing the huge possibilities of CRISPR to a healthcare system.