Team:Rochester/Inclusion
UteRus
Inclusion
This question drove many decisions during the initial project design and continued to shape our project in its entirety. We have found the potential to make our project accessible in every aspect, whether it is providing alternate text for our social media posts or changing our wiki design to determine which colors were the most contrasting or choosing the optimal text font. Moreover, we also made sure to expand these ideas, applying them to our subgroups including wet lab, and hardware. We considered accessibility when designing our diagnostic test, including taking available resources and access to information across the world into account.We considered accessibility of the design of the test, access in regions with different resources available, and access of information to be integral components of our project. However, what else could we do to not only make science and our project more accessible, but also unique? How else can we use our resources to broaden the reach of synthetic biology? To answer these questions, we focused on two main components: language and art.
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Social media
Translations: 18 Endometriosis weekly facts were translated into a total of 10 languages: English, Mandarin, Japanese, Lithuianian, Arabic, Spanish, French, Danish, and Hebrew to reach a wide audience and spread endometriosis awareness.
Deaf community: All videos posted had captions. Posts were designed to be visually appealing and engaging with reduced text. We also posted videos of phrases in American Sign Language.
Individuals who are blind or visually impaired: We created alternate text on all Twitter and Facebook content. We also created an audio description of our promotional video.
iGEM teams from China: We created Wechat, Weibo, and Bilibili social media accounts to post our social media content translated to Mandarin to connect with iGEM teams from China who are not able to access Twitter, Facebook, Instagram, and Youtube.
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Wiki
General public: The wiki was designed with accessible language including careful consideration of word choice and phrasing to allow individuals from all backgrounds to be able to adequately understand and engage with our content.
Individuals who are blind or visually impaired: We focused on the color scheme of the wiki to make sure we choose colors that contrast well together. Font was also chosen because it is large and relatively easy to read. Content is interactive with minimal PDF to allow for assistive text reader use.
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Wet lab
Low-resource areas: Our diagnostic test is designed to reduce cost of creation and implementation. With our “plug and play” antibodies, the test strip is able to be produced at a fraction of the cost of buying commercial antibodies. We also chose a colorimetric option for quantification of the assay with either image processing software we designed or simply by the naked eye. Overall, our diagnostic approach requires less equipment and professionals to perform compared to the gold standard of laparoscopic surgery.
With the socioeconomic gradient in health resulting in an even greater misdiagnosis rate of endometriosis, we wanted to make our design as accessible as possible (Bougie et al., 2019). While lateral flow assays are a great option for a point of care diagnosis, without mass production, they can be expensive to construct due to the use of multiple antibodies per test strip. The high cost of antibodies is typically due to the laborious production process, involving the inoculation of laboratory animals with the desired biomarker and then harvesting cells for collection of the resulting antibody (The Humane Society of the United States, 2005). In addition to the ethical concerns of this costly method, this could present an issue to laboratories and clinics with limited budgets for diagnostic tests, further exacerbating the under diagnosis of this disease in underserved areas. To address this concern, we decided to use synthetic biology in a way that could globally increase the accessibility of our design and other applications of immunoassays.
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Hardware
Low-resource areas: This diagnostic approach is non-invasive including the sample collection method, compared to the standard laparoscopic surgery. The menstrual cup itself is also reusable and sustainable. We designed an UV sterilizer to clean the cup to increase access to menstrual cups without proper access to clean water.
Endometriosis patients: The cup itself is further designed with dimensions that accommodated the specific muscle spasms and pain endometriosis patients may experience with menstrual cups.
Lab technicians: We designed a Do It Yourself (DIY) Centrifuge to make preparation of the sample readily available.
Art
How can science be accessible beyond spoken or sign language? Sometimes words or signs aren’t sufficient to embody what we are feeling. Art allows us to express our thoughts and emotions without having to use words. We invited members from the iGEM community and the larger scientific community to use their hands and imagination to create something beautiful and share it with the rest of the iGEM community and more. Art is limitless, just like science they both require a certain level of creativity in order to come up with the unthinkable. Art can take many forms besides drawing or painting whether it is sculpture, music, graphic design, dance, poetry or other forms of expression, remember the only limit to your imagination. We asked participants to set their imagination free and create their own interpretation of Science As Art (SAA). Some SAA examples appear below (Fig. 1-2). We have received a total of 29 submissions from 7 different countries.
Our graphic designer, Isabel Lopez-Molini, has created this sketch to share her own interpretation of both the beauty and pain that infertility possesses. Pictured in the center, Goddess of Infertility, is inspired by the disease that motivated our project.
Dance
Dance is one example of limitless art. We collaborated with iGEM teams: BITS Goa and Madras to create our own Dance for SAA. This dance shows the boundaries and challenges that science can overcome during difficult times, specifically during the COVID-19 pandemic, through cooperation and embracing diversity. While also creating awareness about the language barriers that are present within the iGEM community. Through dance all teams were able to communicate with each other through a universal language. It became a meaningful experience that impacted all of the igemers that were part of it because we not only learned from each other but each of us had the opportunity to teach others. In the end, that is what iGEM embodies: a diverse community with the same goal of becoming ever better and paving the path for a better tomorrow. To learn more about this partnership click here. Our dance initiative was just one of the many examples of how many iGEM teams can provide their own perspective of SAA and be able to share it in a fun and learning environment.
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Dance Collaboration
Our team worked with BITS Goa and IIT Madras teams to design a movement collaboration to promote diversity.The activity had the participants put their team logo as their background, then pass a mask around while introducing themselves in their native language. This activity was meant to demonstrate that although the pandemic has affected us all we still persevere and its meant to create a dance that shows the possibility of overcoming the boundaries and challenges using science during difficult times through collaboration and embracing diversity.
Besides the pass the mask, our collaboration also included a series of movements using different styles of dance to express the different stages that could possibly describe the process of Covid-19 affecting one's life, from being happy and healthy to suffering and pain. This collaboration started as a way to explore the methods of having a movement collaboration while being socially distanced and constrained to online platforms. The purpose behind the dance ended up being Covid-19 mostly because this is the reason behind the use of such platforms, while also supporting the idea of science as art that we have been working on.
As a dancer this proved the possibility of breaking some boundaries and being able to collaborate with other artists that are in another part of the world, it was also a great experience of learning how covid-19 affected other regions of the world on the personal level and not just how it is portrayed in the news. This collaboration also allowed different styles and types of dance to be included in one single video which might be one of its most impactful parts.
As an iGEM team member this allowed me the opportunity to get to know more about other teams, and it helped me understand the diversity in the competition even more which is what largely contributed in thinking about the pass the mask event to celebrate the diversity in iGEM.
Outreach
Elementary students were able to participate in our science as art initiative (SAA) by designing their interpretation of the cell. 15 campers from Camp Sonshine and 15 elementary students participated. All with the same goal of creating their own interpretation of science and expressing it through art. Students were telling us comments such as “science is fun”, “I wish I could do this everyday”. We were proud and glad to see the art they had created, as well as the smiles they displayed as they created their beautiful masterpieces.
American Sign Language
Our team is lucky to be located in a community as diverse and unique as Rochester, New York, which happens to be home to the largest Deaf population per capita in the world with about 90,000 Deaf or hard of hearing individuals among 700,000 residents. (York 2006). Rochester is also home to the National Technical Institute for the Deaf (NTID) is the first and largest technical college for the Deaf and part of Rochester Institute of Technology (RIT). National Technical Institute for the Deaf (NTID) which is the first and largest technical college for the Deaf. Expanding our efforts beyond spoken languages furthers the reach of accessible content, and is especially important for our team to meaningfully engage with our community.
We first needed to determine the most respectful and responsible way to approach the Deaf community. Two of our iGEM team members are majoring in American Sign Language (ASL) and were able to share some initial considerations with the rest of the team. For example, they shared that one should refer to an individual as Deaf, not hearing impaired, when communicating with the Deaf community, unless told otherwise (Golos et al., 2012). This is because the term “Deaf” focuses on Deaf Gain - what an individual gains from being Deaf. A community, sign language, support, among others, etc, and not on what a Deaf individual lost: hearing (Foss 2014).
We were able to speak with Professor Louise Horsfall, the Chair of Sustainable Biotechnology at the University of Edinburgh interested in synthetic biology. Although she is not culturally Deaf, she is deaf in one ear. She gave us insight into how her hearing impairment impacted her career as a scientist. Accommodations as simple as choosing where she sits in a room first and communicating in areas with minimal background noise allow her to thrive in the synthetic biology field. She confirmed that with the proper accommodations, any person has the ability to reach their full potential. She shared,
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"[Sign Language] is really, really useful beyond the Deaf community”.
Many studies have been done how teaching babies sign language while learning spoken language accelerates communication and development. ASL allows individuals to communicate over far distances or if you were separated by a window.
Unfortunately though, we were not able to get in touch with any culturally Deaf individuals in the synthetic biology field which emphasizes the lack of Deaf involvement in the field, further supporting our initiatives [social media collaboration, spoke with.
We continued to find ways to incorporate ASL into our project as a response to Professor Horsfall’s remark that sign language exposure is useful for all individuals. We released videos of 10 simple iGEM phrases and responses in ASL and encouraged teams to learn them, think about how they are breaking down language barriers, and share videos of their team using these signs on social media.
We chose to include common phrases said at the iGEM Jamboree because we hope that teams use them to interact with each other, as sign language exposure is beneficial beyond the Deaf community. iGEM teams can communicate during the Jamboree using ASL even with a unique online platform this year. Sign language in an online format allows multiple conversations to occur simultaneously without interruption.
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Full list of phrases
Hi, how are you?
What’s your name?
Where are you from?
Nice to meet you.
What’s your project topic?
I want to learn about your project.
I want to watch your video.
How many teammates do you have?
Your project is really cool.
What’s your favorite part of iGEM?
Teams BITS Goa, IISER Berhampur, and MSP created videos of the 10 signs to share on their respective social media. With a combination of 1,501 instagram followers from various parts of the world between the participating teams, as well as more followers on other platforms, we were able to reach a wide audience of iGEMers.
Team UteRus(University of Rochester)
IISER Berhampur
MSP
We also posted several shortened versions of our ASL challenge, with one video per phrase to encourage further engagement. These shortened had over 100 views per video. It was also retweeted by members of the Deaf community which furthers the connection between synthetic biology and the Deaf community.
For more insights and advice on how to make sure we approached the topic in the most respectful and productive way possible we reached out to ASL professors from the University of Rochester. One professor, Marlene Elliot, an interpreter at the University of Rochester Medical Center (URMC) with over 30 years of experience in the field of science, suggested a group called Partners in Deaf Health (PDH) is an excellent place to start to learn more about sign language in science because of their awareness of the community’s current needs and interests. PDH is created by Deaf community members and professionals with the goal to increase access to medical information in ASL. However, members of this group had increased professional responsibilities at URMC brought on by the COVID-19 pandemic and were unable to commit their time to synthetic biology in the current environment. Professor Elliot also advised us to be aware that the Deaf community should take the lead on this project and we are simply facilitating any efforts they are interested in. Future Rochester iGEM teams can pick this up and work with PHD in non-pandemic times when availability increases.
University of Rochester professor and Strong Memorial Hospital interpretor, Marlene Elliott.
We wondered if facilitating implementation of a synthetic biology vocabulary resource on a platform that many sign language users are already familiar with aligned with the Deaf community's current interest. in order to further increase engagement with the Deaf community. iGEMers can have on the Deaf community. ASLcore is a website created by the National Technical Institute for the Deaf (NTID). The website houses signs for many fields like biology, chemistry, sustainability, engineering, art, philosophy, and more. We noticed a lack of a synthetic biology category for terms and reached out to NTID to learn more about the process.
We aimed to facilitate the integration of ASL vocabulary of synthetic biology on a resource that the Deaf community already utilizes so we talked to Miriam Lerner, the founder of ASLcore and an esteemed interpreter at NTID. She spoke to us about her motivation in creating the website during several phone calls. She explained academics is one area that often lacks resources for standard signs; resources for specialized or newer fields of science, like synthetic biology, are especially limited. She continued to elaborate that the Deaf community is always welcoming and interested in adding these fields to a central resource when it is possible, as long as it is done in a respectful manner. Ms. Lerner explained the process of developing signed vocabulary for an emerging field and told us that the first step was to find out if there were any Deaf professionals in synthetic biology. She also echoed Professor Elliot’s remarks regarding the Deaf community taking the lead on translation efforts.
One problem we encountered was the lack of access for in person collaboration. The COVID-19 pandemic created a barrier that prevents the close interactive communication that allows for new signs to fully develop and flourish. Ms. Lerner explained that the most effective way to develop signs is to engage in person without masks in order to clearly see both facial expressions and use of signing space for comprehension. Facial expressions allow ASL users to convey meaning and gauge understanding and significantly corresponds to measurable benefits (Huenerfauth et al., 2011). Upon further contemplation, we decided it was not in the best interest of the Deaf community to pursue the creation of synthetic biology signs during this time. However, this approach will be valuable for future teams to pursue because it is directly impactful on the Deaf community and increases access to the field of synthetic biology. ASLcore members are excited to work with future iGEM in translation efforts.
In the meantime, Deaf community member Rose Crisman graciously translated our promotional video into American Sign Language. Rose is 18 years old and currently in her second year at RIT/NTID interested in studying science, especially biology. She is Deaf and has been exposed to ASL since birth. When asked about her previous knowledge of endometriosis, she responded:
“I had no idea about endometriosis. [Just] that it would cause severe cramps and heavy period[s], but more [than] that, I didn’t know until after reading the transcript.”
We hope that other Deaf community members will be impacted in a similar manner to Rose. With the translation of the promotional video to American Sign Language, we aim to increase awareness of endometriosis among a diverse population and spark or solidify interest in science.
Rose explaining endometriosis in American Sign Language (ASL).
Survey exploring language in iGEM prepared for distribution by future team
While incorporating efficient ways to communicate due to language barriers within our project, we also thought it was important to look at language barriers within iGEM itself. We created a survey for a future Rochester iGEM team to continue exploring language and accessibility to further our efforts to encourage broad participation in synthetic biology. The five-minute survey addresses:
(1) To what extent does a language barrier exist and inhibit iGEM teams from performing to the best of their ability?
(2) How are language barriers impacted by accommodations?
The questions are designed to reveal insight into language impact on iGEMers. The survey considers questions that address comfort of verbal production and receptive skills, and number of awards that past iGEM teams have won. The survey also addresses what accommodations iGEMers currently use or would like to use in the future.
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