During our project we identified two keys stakeholders: the first were the experts we interviewed for their thoughts and considerations, and the second was the public and future scientists who we addressed through our outreach programs.

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.

Public engagement

We also worked extensively to engage with the community about our project and synthetic biology as a whole.

This engagement was present mainly in our high school synthetic biology workshop. During the second half of the day we worked with the students discuss new ways of thinking about ethical issues in CRISPR-Cas 9. We did this through exploring case studies related to gene drives and genetic editing (The content of each case study including what points the iGEM leader was aiming to bring home can be found below). Initially we found that when students first began talking they had one ideal of how such a case should be solved. However, after further discussion with other students and with the iGEM leader we found the perspectives seemed to broaden. As the students were exposed to different ways of looking at a situation they seemed to take in the ethical complexity of some scientific issues. It was through this exercise we hoped to engage students who are already interested in bioinformatics and biology to begin thinking about ethical considerations at an early stage.

Case studies from workshop

“Gene Drive Mosquitoes”

Malaria, a deadly mosquito-borne parasitic infection kills over one million people each year. Anopheles Stephensi is the breed of mosquito most known for spreading malaria in many regions of the world. The cost of the Malaria infection is high and ever growing. A new form of mosquito has been bred in a lab for the purpose of eradicating the mosquito population. The new Mosquitoes are limited in egg production in females with the purpose of significantly reducing mosquito populations. The anticipated outcome is that Malaria will be eradicated nearly worldwide, saving millions of lives. A possible outcome of introducing these gene drive mosquitoes in the wild is the likelihood that the species will go extinct. However, the desire to save millions from Malaria is difficult to ignore.

Should these altered mosquitoes be released into the wild?

Consider different concerns that may arise from introducing these gene drive mosquitoes in the wild. It is important to consider both what could happen to the mosquito populations and how this may affect surrounding environments and people.

Discussion Points

• Extinction of species effect on the environment
• Mosquitoes may become resistant and/or new mosquitos may begin spreading it
• New form of infection may come
• Will likely save millions and save in cost of medical care

“Eradicating Down Syndrome"

Jenny and Mark are looking to have a child through In vitro fertilization (IVF). After implantation has occurred and Jenny goes for ultrasounds they discover that their child has Down Syndrome (DS) or Trisomy 21. This disorder can cause delayed growth and may limit a child's ability to learn at what is considered a “normal” pace. Depending on the severity of the condition, someone with down syndrome may have difficulty living on their own and supporting themselves into adulthood (this is dependent on the person and each case may vary greatly).

A new technology involving the use of CRISPR Cas 9 would allow doctors to alter the genome of their unborn child and likely get rid of the DS. While Jenny and Mark want them and their child to have an easier life (one which could prove to be more difficult with DS) they also struggle with the idea of assuming their child will have a difficult life. Assume that the technology is advanced enough to get rid of the DS; should Mark and Jenny alter their child’s genome? What moral, social and physical problems might they face depending on the choice they make?

Discussion Points

• Ableism of getting “rid” of down syndrome
• Pressure on parents to give child best life
• Pressure on parents to be able to support the child for much longer
• Pressure to accept the child as they are
• Children with disorder can lead perfectly happy and fulfilling lives
• Children can also be bullied
• Where does it stop/what is a disorder?
• What is normal/how is this shaped by our society?

References

1. “The Reality of Malaria.” UNICEF, accessed Sept. 10, 2017 - https://www.unicef.org/health/files/health_africamalaria.pdf
2. Callaway, Ewen and Ledford, Heidi. “'Gene drive' mosquitoes engineered to fight malaria.” Nature, Nov. 23, 2015 - https://www.nature.com/news/gene-drive-mosquitoes-engineered-to-fight-malaria-1.18858