Sydney Perelmutter

Link to the first draft: https://docs.google.com/document/d/181KqTPseyD-qaSTVJtd_wxgnE3OC3LUHgZ42PDQf9IA/edit?usp=sharing

NOTE: My first draft includes all reporting, up to this point, covering my three main sources. The multimedia elements, which are subject to change, will be inserted where there are asterisks and text in all caps. I have had multiple interviews with genetic counselors, whose input will be included in the form of audio and video for the final draft. I am also planning on including multimedia elements from interviews with a geneticist for the final draft. (I refer to my main characters primarily by their first names, a style choice that I am willing to change, but I find it sounds more personal.)

This week was higher in triumphs than challenges, and I am happy with the progress I have made this week. Friday afternoon (today), I have my first interview with Dr. Penny Kendall Reed at her office in Yorkville. I took the time to ask my main characters if they had any questions for her since she is a geneticist. Brittany, who studied genetics in school, had very few questions, but my other two main characters had a slew of questions (many of which were similar to mine). In an e-mail, Brittany sent me the results of her 23andMe test and gave me permission to use them on my multimedia website. She also explained everything to me in depth and told me what she was most worried about in terms of her results. 

After my interview with Dr. Reed, I will have to decide whether I need more expert sources with different backgrounds and knowledge. As Asmaa pointed out in class a few weeks ago, it doesn’t sound natural to insert expert sources throughout the story just for the sake of it, so I will try to incorporate my expert source(s) as characters too. 

Over reading week, I’m going to begin writing my story. At this point, I believe I have gathered enough information (for the first draft, at least) to begin writing. I want to start writing now because the sooner I notice gaps, the sooner I can address them with my sources. The first draft is due in about two months, so this should give me enough time to continue following up with my sources. 

Over reading week, I am also going to decide what website service to use for my MRP. I have been leaning towards WordPress since I am already very familiar with its functions, but I will explore other options. It is also going to be a good time to start piecing together which visual/multimedia elements I want to include. Now that I have permission to use Brittany’s genetic testing results, I am thinking about including a short video that explains them in depth with her voiceover. 

This week, I faced some challenges but luckily, there were triumphs that made up for them (to a certain degree). I began my preliminary interviews with one of my experts, Dr. Penny Kendall-Reed, who will be returning from a vacation shortly. I will be meeting her at her office in the coming weeks for a formal interview.

I also spoke to one of my main characters, Sarah, over the weekend and asked her if she had any questions to ask the geneticist. Despite doing her own research, there were still a lot of things she was unsure about, so I will be sure to ask Penny her questions. I also spoke to my other main character, Brittany, who actually has a degree in genetics from Trent University. Aside from talking about her own experience with genetic testing, she has been giving me some lessons on genes, odds and common genetic illnesses. I’ve realized after talking to Brittany for a couple months now that she is in a very unique situation – she has studied genetics, but she’s also at risk of developing a genetic illness, something she didn’t know before she started studying. For that reason, I’m going to be focusing slightly more on Brittany (she’s also the youngest person at 23, and I was hoping my main characters would be around her age). Brittany’s sisters and parents are also willing to speak to me a bit about their family history and how they have grappled with Brittany’s chances of developing genetic illnesses.

One challenge that I faced this week was with Sarah. I mentioned in my last memo that she would be busy in the coming weeks and would have as much time to speak with me. She let me know over the weekend that her family does not want to be involved because it makes them too emotional and worried. This is not detrimental, however I would have liked to include their input. The family’s unwillingness to talk actually contributes something to this story though, since it is such a sensitive topic. I think it will be worthwhile asking all my main characters more about their family’s involvement and whether they are supportive of their decisions. 

This week brought with it some challenges and triumphs, as per usual. The main challenge is that one of my main characters let me know that she’s going to be fairly busy in the coming weeks, meaning she won’t have much time to speak to me. We set up a phone interview over the weekend that I hope will cover a good amount. She is still willing to participate and give me her time, its just going to be a little less than expected. This will allow me to explore other potential secondary characters in more depth to see what more they have to offer.

Since I’m going to be interviewing a geneticist soon, I have asked my main characters if they have any questions for her. In addition to my questions, they have questions that I would not have thought of, and I think it’s a good way to get them involved. They are experiencing anxieties about their own genes and how it can impact their children, so it would be a good opportunity for them to learn and have some of their questions answered. 

As the due date for the first draft approaches, I’m beginning to think that the first draft is going to look like mostly text, with one or two visual elements. For the first draft, I am going to have the website created and map out which visual elements will be where, but I think I should focus on the content before adding other digital elements. 

Other than that, next week I will continue checking in with my main characters. As per Asmaa’s suggestion, I am going to ask them if I can speak to their family and friends for extra comment since I’ll need more background information on each person. I’m also going to start compiling a list of questions for my expert sources. Once I meet with the geneticist, I will ask her to refer me to others like her.

Since settling into school and getting a better grasp on my time and schedule, my MRP has had some progress in the last week. Even though I have not conducted any interviews since the end of the summer, I got in contact with an expert source that Sydney Wilson referred me to. Her name is Dr. Penny Kendall-Reed and one of her areas of expertise is using genetic testing to personalize individual treatment plans to prevent and treat disease. She is a perfect source to start off with since she is a co-author of several bestselling books and she’s had a multitude of health-related articles published. She will help me determine how accurate 23andme genetic tests are since she helps patients deconstruct their results.

Next week, I am going to start contacting my other expert sources from the University of Toronto and SickKids Hospital. I am going to have to determine beforehand whether they can each provide me with different, but relevant information or whether one person can help answer all my questions. It is not worth having three different sources when one or two people can give me the same information, so I will plan my pre-interview questions with that in mind.

Something that was brought up in my discussion with my partner on Wednesday was the fact that all three of my main characters are female. It did not really occur to me as an issue since they all have different stories to tell from unique points of view. The men that have reached out to me were less willing to discuss certain details, but I still have one male secondary character to include if necessary.

Lastly, I decided that instead of having one main character that I would give equal attention to all three. Since I am doing a digital feature, I thought of a layout in which all three characters have different pages. It would likely be too confusing for readers if they had to keep scrolling up to remember each character, so I like the idea of each character remaining separate from each other. I will want to have at least one or two digital elements for each of their pages, whether it be a video, photo gallery, map, timeline etc.

Between working at the Ryersonian and back-to-school madness, the progress of my MRP has taken somewhat of a backseat. However, this is only temporary as I am settling into my school and work schedules and further progress will resume next week.

Since handing in my Expanded Treatment, I have followed up with my main characters and scheduled further phone/Skype interviews with them. In the coming week(s), I am going to have to decide which character is going to be the main character, or if all three should be given equal attention. Since I am doing a digital feature, perhaps I could have a separate page for each person’s story.

Next week, I am going to start contacting expert sources and scheduling preliminary interviews with them. A potential challenge with my expert sources is that many of them work in hospitals, so I would have to gain permission to film and record at their workplaces or find another place to interview them. Sydney Wilson gave me a contact for a geneticist in Yorkville and I am going to start with her. I am going to have to do further research before interviewing any of my expert sources so I know what kinds of questions to ask them. Another task for next week will be forming a list of questions for each of my expert sources.

One ongoing issue from the summer is that many people have been reaching out to me with sources and potential characters. It is not the worst problem to have since an excess of sources is never bad, but I am going to have to include people in my MRP with the most intriguing stories. This is going to be somewhat of a challenge because I wouldn’t want to exclude anyone that has a unique experience, but I also have to realize that the overall thesis of my MRP is bigger than any one character.

At the end of class Wednesday, Taylor gave a good idea for a theme statement. Since then, I have been thinking about what the layout of my website is going to look like with the theme statement front and center to get the audience thinking. Even though I’m not at the stage of putting my MRP together, it’s always good to have it the back of my mind.

https://docs.google.com/document/d/1sOniUu-jpaYQ7rj88iQwW3pGqUlrj3UgSbGr2Sdufj8/edit?usp=sharing

Project overview

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/)

Human sources

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. 

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