The topic of my MRP does not only have meaning to me, but to those around the world who worry about the future of their health and bloodline. For those of us whose parent, grandparent or other relative has a fatal or chronic disease, the worst word to hear during the diagnosis is ‘genetic.’ Some people may seek genetic testing immediately, while others may refuse, fearing that the results will be unfavorable. Whatever the choice, genetic testing is a highly personal decision, and the aim of my MRP is to explore why or why not one might pursue genetic testing and the impacts it might have on their lives.
The idea for my MRP is based on my own personal experience with genetic testing, or the lack thereof. When I found out that my mother’s illness was genetic (after being told it was not), I immediately wanted to get tested. However, after much consideration I decided I would put it off until I want to have children, and even then I may decide otherwise.
Deciding whether or not to get genetic testing can induce stress and anxiety, especially for those of us who become concerned for our health because of a common cold. If one pursues testing, it can take months for the results, cause fear and worry and it may not end favourably. If one forgoes testing, it can leave them wondering about their future and cause paranoia. These are only some of the broad factors individuals must consider before making a decision.
The plan for my MRP is to find one individual (the primary source and main character) who had to decide whether or not to pursue genetic testing. I want to tell their story so that others can understand the realities of tough decision-making.
Story form and justification
I was originally planning on making a short documentary for my MRP, but after a discussion with my advisor, I have decided that a multimedia or digital story is the best format. We discussed the limitations and difficulties of making a documentary, namely the fact that my source would have to allow me into their lives and discuss personal matters on camera. Despite being passionate about documentaries, I believe my MRP would benefit from multiple aspects, such as text, photos, infographics, and perhaps a short video.
Therefore, the format of my MRP will be a multimedia website (either on WordPress or another website). I hope to be able to shoot and edit some video and audio to include on the site, as well as photos and make a few charts/infographics to explain some of the more scientific elements. I like the idea of a multimedia website for my MRP because there is no limit to the elements that can be included and I appreciate the creativity aspect of building a website as well.
Primary and secondary sources
This is a list of a working bibliography to date:
Clinical Genetic Program (http://www.sickkids.ca/CGenetics/What-we-do/Clinical-genetics-program/index.html)
M.Sc. Genetic Counseling Program (https://www.moleculargenetics.utoronto.ca/genetic-counselling#gc-contact)
How is genetic testing done? (https://ghr.nlm.nih.gov/primer/testing/procedure)
Genetic testing (https://www.mayoclinic.org/tests-procedures/genetic-testing/about/pac-20384827)
Genetic counseling (https://www.gfmer.ch/Books/Reproductive_health/Genetic_counseling.html)
How Does the Testing Process Work? (http://www.aboutgeneticcounselors.com/Genetic-Testing/How-Does-the-Testing-Process-Work)
Making Smart Decisions About Genetic Testing (http://www.choosingwisely.org/patient-resources/making-smart-decisions-about-genetic-testing/)
Making the decision to have predictive testing (https://www.geneticalliance.org.uk/information/service-and-testing/making-the-decision-to-have-predictive-testing/)
I had my DNA tested for diseases, but wasn’t prepared for the results (https://www.theglobeandmail.com/life/facts-and-arguments/i-had-my-dna-tested-for-diseases-but-wasnt-prepared-for-the-results/article4533518/)
More appreciation of life or regretting the test? Experiences of living as a mutation carrier of Huntington’s disease (https://www.ncbi.nlm.nih.gov/pubmed/20878217)
Most Women Do Not Regret Genetic Testing Before IVF (https://www.physiciansweekly.com/most-women-do-not-regret-genetic-testing-before-ivf/)
There are three human sources that I am hoping to center my MRP around, but one of them will be my main source. The first source will be the individual who had to decide whether or not to get genetic testing. While I have not found this source yet, I have multiple points of access through which I could find them.
The second source is a genetic counselor here in Toronto. From my preliminary research, I have found that some genetic counselors focus on specific illnesses, mainly cancer, while others focus more broadly. The Hospital for Sick Kids appears to have a genetic counseling clinic that focuses more broadly which is what I am looking for. According to their website, there are 14 genetic counselors working at the clinic, so I will have to do some research before deciding which counselor I would like to interview.
The third source is a geneticist. Whereas a genetic counselor will explain the process by which genetic testing is done, a geneticist can speak to the science behind genetics and inheriting diseases. Genetics are complicated to understand so I am hoping a geneticist can break down the (basic) science behind genes. I think this story would really benefit from a proper explanation because I still don’t quite understand genetic illnesses, chances of inheriting one, etc.
Access to principal sources
In order to find my main source, there are a couple people/groups I can reach out to. First, a Facebook groups called CJD family in which people who have been afflicted by CJD (a rare form of dementia, sometimes genetic, that my mother suffered from) can share their thoughts, ask questions, and support one another. I have come across multiple people in the group asking about genetics because they are worried that they could inherit the disease. My first option is to put a callout in the groups asking if anyone has done genetic testing or not and are willing to be interviewed. My second option is to ask my friend’s mother, who is a geriatric psychiatrist, is she could refer me to any patients. My third option is to ask my dad if anyone in his group counseling meetings has undergone genetic testing.
For the genetic counselor, I am going to have to call or visit Sick Kids in order to find the source. However, if my main source went to a genetic counselor, I could also ask to be referred to their clinic. As for the geneticist, the University of Toronto’s Department of Molecular Genetics might be a good option. Speaking to a professor would be ideal, since they would be able to break things down for a non-scientific audience.
Reporting and production schedule
Before any reporting a producing begins, I have to lock down my human sources and my plan is to have this done by mid-August. I also have to account for people dropping out or other issues arising, but mid-August is the tentative plan. Before interviews can take place, I have to allocate some time for research and plan my questions carefully for each spruce.
After securing human sources, I will arrange a meeting time with my main source in early September to establish terms, obtain written consent, and plan an interview schedule. Because this will be a deep dive into someone’s personal life and decisions, one interview will obviously not suffice. I am hoping to be able to do three in-person interviews with my main source between September and December, and if I need any more information from them we can speak over the phone or via e-mail.
As for the genetic counselor and geneticist, I predict that schedules will not be as open. I will plan on meeting with them some time between September and October for preliminary interviews. I am hoping to be able to conduct at least one in-person interview with each of them, but two would be ideal.
Once first interviews have taken place, I can begin sketching out the elements of my website. Perhaps I will want to record some of the second interview with my main source for an audio clip. I may want to film the interview with the genetic counselor for a short video. I could also incorporate some of the geneticist’s research into an infographic for the website. These are decisions that will be after the first round of interview.
Right now, it is hard to construct an outline of my MRP in head since there will be many moving parts. Throughout the process, I intend to keep all my options open in terms of elements that I can incorporate into the site since there will always be new ideas popping up from sources and research.