Personal Reflection of mRNA side effects
In defining the demonstrated need of our project, our first step in the human practices journey was our team’s internal reflection to fully understand our firsthand knowledge of mRNA vaccine side effects and the side effects of friends and families. From this reflection, we learned about the spectrum of reactions that the human body could have to a vaccine, as well as how our friends and families felt after their vaccinations.
For some of us, the reaction was minimal, and there were no adverse reactions for them or their entire family, contrasted by other members who felt sick for days or had systemic side effects lasting up to or past a week. Within our team, we had a variety of side effects including, but not limited to, injection site soreness, stiffness, headaches, fatigue, nausea and chills, much of which had never been a complication of previous vaccinations.
The most extreme side effect reaction came from a disabled member of our group with a preexisting condition that led to her falling into the immunocompromised category. Her experience with vaccine side effects ended up being on the higher severity of the expected or common side effects, but still created an extreme physiological burden after both doses. After the first dose, she had a low-grade fever for several days, as well as persisting headaches, aches and chills, symptoms close in strength to the common cold. These side effects diminished after a couple days, but did create an anxiety regarding the second dose, which anecdotal evidence had been circulating saying side effects were worse for many people. This anxiety was exacerbated by the need to maintain health for schooling and work. After her second dose, those initial side effects intensified and lasted for over a week leading to her missing classes and shifts, in addition to other underlying conditions flaring up.
Though this was the most substantial reaction on our team, every member who had side effects, about half our team, said those side effects were much worse in comparison to any previous vaccination they had received and thought it might be an inhibition for some to get future vaccines if they either endured those side effects or saw someone else go through them.
From this reflection, as well as the overarching goals of increasing vaccination rate and safety, we identified a couple questions that our human practices should endeavour to answer and guide our project.
What are the experiences of those with disabilities or chronic illness after getting mRNA vaccines and how do they compare to previous vaccines? What factors contribute to lower vaccination rates across specific demographics in the United States?
Connecting the Project to People
As Project Cargo’s technical design is not largely influenced by the human side of the project, the Integrated Human Practices largely comes as a result of the influence of the reflection on side effects for our members, family and friends. From our reflection, the aspect of the project that was informed was further human practices endeavor, as well as the desire to learn more about vaccine hesitancy both inside and outside the context of side effects.
At the time of conceiving further human practices avenues, one of the relevant social topics was the vaccination rate, and further the vaccination rate between different demographic groups, whether that be age, ethnicity or location. One of these demographics we identified as an interesting source of information was Black Americans, as the percentage vaccinated lagged behind at 33% (June 2021) nationally (1). In addition to falling behind in percent of population vaccination, non-Hispanic African Americans in the United States also have an age-adjusted disability percentage of 22.2% compared to the national average of 18.7% (2).
Figure 1: Population that has recieved 1 dose of COVID-19 Vaccine
Figure 2: Mr Glenn Ellis
From a better understanding of the demographic we wished to talk to when learning about vaccine side effects and vaccinations, it was understood that we needed to talk to someone with a background of advocacy and public health research in the Black community. For these requirements, we contacted Mr. Glenn Ellis, a medical ethicist who focuses on healthcare equity and protection of patient rights in clinical research and healthcare.
Figure 3: Zoom meeting!
Mr. Glenn Ellis was an invaluable resource throughout our human practices journey, giving guidance on ethical conduct of research, feedback on interview questions and acting as a gatekeeper in recruiting participants. With help from Mr. Ellis, a complete human practices plan developed, taking its main topics of interest from our aforementioned questions that arose from personal reflection.
Interviews and Ethical Considerations
The core of our Integrated Human Practices is data collected from a series of 7 phone interviews with individuals who identified ethnically or racially as Black, of varying levels of ability or illness, a cross-section of the demographic that we hoped would be able to speak on vaccine side effects, as well as have a knowledge on the causes of lower vaccination rates of Black Americans in comparison to the national average.
In the creation of our semi-structured phone interview, strong ethics practices was a cornerstone of our project, especially as our team is aware of the Tuskegee Syphilis Study and its absolute failings of bioethics standards for the Black community of Tuskegee, Alabama. For more information about the Tuskegee Syphilis Study and its relevance in modern healthcare, please refer to Responsible Science.
As interviewing these participants was low risk, the most important ethics considerations we had in the formulation and completion of these interviews were informed consent, and participant confidentiality. Informed consent was important for this project because it was necessary for each participant to know that they could refuse to answer any question or stop the conversation at any time for any reason, as well as knowing that they were recorded for transcription purposes. Confidentiality was another important aspect of our bioethics because we needed to separate the identity of a person from their responses. For our project, confidentiality was implemented by assigning a participant number, as well as referring to them by their number for the audio transcriptions.
After determining the bioethics standards we needed to implement, the question writing and determining what information was necessary for collection, the following semi-structured interview was created:
INSERT PDF OR JPG OF INTERVIEW QUESTIONS
Figure 4: Interview results table
This table covers the demographic information, as well as the questions that were about personal experience with side effects.
In addition to the standard information gathered above, our team wanted to hear more about individual experiences of vaccinations and COVID, either about the participant or family and friends of the participant. These questions lead to some of the following excerpts.
Did your side effects from the second vaccine dose make you regret getting the vaccine?
4: “Oh no, and I basically kept that [the side effects] because I didn’t want to say that to other people and discourage them from getting it so I kept my side effects to myself… There were many people around me at the time I got my vaccine, there were many people around me that had not gotten it...”
This quote was really intriguing to our team, highlighting something that we had not thought about before in the intersection of vaccine hesitancy and side effects. Many of the people who got the first doses of mRNA vaccines fell into high risk categories whose honest experiences might dissuade lower risk people from getting the vaccine after seeing what their disabled or chronically ill friends and family went through. For a follow up survey, a good question about vaccine hesitancy could be about reactions families and friends had to the vaccine. It would be interesting to know if the participant was right about keeping their privacy in regards to side effects out of fear of swaying anyone on the fence.
Do you have any experiences you would like to share regarding the pandemic and any vaccine/testing or general accessibility problems you experienced in the context of your disability or chronic illness?
2: “Well, I was skeptical at first to receive any vaccine. I live in Tuskegee, Alabama and I was pondering the Tuskegee experiment…”
This quote was the biggest connection our project had to vaccine hesitancy for Black Americans in relation to bioethics violations and created a way for us to understand more about this experience and the implicit mistrust of the medical community this area experiences founded in documented events. To read more about the Tuskegee Syphilis Study, please refer to Responsible Science.
In addition to expected side effects, did you experience any unusual side effects?
6: “After the second vaccine and the two weeks it took to go into effect… I ended up getting Guillain-Barré syndrome.”
For our team, this was one of the most impactful interviews, hearing one of the most severe side effects that can come from a vaccination, coming from an mRNA vaccine after a lifetime of vaccines without incident. After listening to their story, we wondered how our project would apply in this scenario. Would it be able to decrease the prevalence or severity of the more rare and dangerous side effects? Should it be something we prioritize in later iterations of our design? What other rare side effects are there that our project could alleviate?
Goyat, Rashmi, et al. “Racial/Ethnic Disparities in Disability Prevalence.” Journal of Racial and Ethnic Health Disparities, vol. 3, no. 4, 2015, pp. 635–645., doi:10.1007/s40615-015-0182-z.
Nambi Ndugga, Latoya Hill. “Latest Data on Covid-19 Vaccinations by Race/Ethnicity.” KFF, 6 Oct. 2021, www.kff.org/coronavirus-covid-19/issue-brief/latest-data-on-covid-19-vaccinations-by-race-ethnicity/.