Inclusivity is an important consideration in synthetic biology. Any solutions arising from this field of research need to be easily accessible to those who will benefit from the project to make any lasting impact. Our device, BLISS, seeks to make managing EPI more inclusive by increasing the range of treatment options. Additionally, to encourage children in under-resourced learning environments to gain an interest in synthetic biology, we consulted homeschool educators to create a synthetic biology handbook for homeschooled children. We also wanted to ensure our website containing information about our treatment as well as our synthetic biology handbook are easily navigable and accessible.
The current state-of-the-art treatment for EPI is pancreatic enzyme replacement therapy (PERT), which uses enzymes sourced from porcine pancreases [1]. However, these enzymes can only be extracted after the pig is killed [2]. There is no alternative free of animal product, so patients who have religious or ethical objections to consuming porcine-derived products must decide between upholding their beliefs or protecting their own health. We talked to several healthcare experts who expressed concern about their patients expressing this exact dilemma. Additionally, patients can have medical restrictions that prevent them from consuming animal-derived medications. For example, patients with pork or meat allergies and specifically, patients with alpha-gal syndrome, which is characterized by severe allergic reactions to red meat and other products from mammals, can react negatively to PERT [8].
Our solution addresses the inclusivity gaps in current treatments with a synthetic, pig-free alternative that uses human and bacterial enzymes. We don’t want to replace PERT; rather, we want to give patients more autonomy by providing choices that better align with their existing lifestyles.
Homeschooling is the act of educating one’s children at home [4]. Parents often choose this option to provide a more flexible, individualized curriculum for their child. Currently, over 60,000 students in Virginia are homeschooled [5].
However, while members of the homeschool community share resources with each other, there is rarely any effort made by mainstream educational institutions to provide homeschool educators with new materials. We reached out to two Virginian homeschool experts, Mrs. Eleanor Nicholson and Mrs. Sudhita Kasturi, to talk about how to improve educational resources for the homeschool community. We found that they had difficulty obtaining scientific teaching resources and low-cost lab protocols that can be easily replicated at home.
We decided to develop a free synthetic biology handbook for homeschooled children to supplement their educational STEM resources. The handbook contains a broad overview of biology to make it accessible for those without an extensive STEM background, as well as a deeper dive of key subjects to encourage curiosity about synthetic biology. It also includes several low-cost experiments that teach synthetic biology concepts.
Additionally, we collaborated with the Summer Bridge program at the University of Virginia. This is a free summer program that introduces incoming first-generation and underrepresented minority engineering students to resources and opportunities at our home institution. As part of this, we were invited to give a presentation about synthetic biology as well as how to get involved with iGEM at the University.
Our slideshow that we presented is under the education tab: View slideshow
We aimed for our handbook to be user-friendly and easy to read for any interested students, not overwhelming or confusing to navigate. With this in mind, we adhered to design guidelines for people with autism and dyslexia so that the handbook layout was not a barrier to accessibility [6]. To make the text more legible, the handbook has a high contrast ratio between the text and background, a minimum of 14-point font, sans-serif text, and large spacing between lines. Additionally, to increase ease of understanding, each page is formatted in a logical, consistent manner with relevant flowcharts and diagrams. To ensure that the specificity of the content is not a barrier, the handbook starts with a broad overview of biology before zooming into specific synthetic biology principles.
Similar accessibility guidelines were followed for the website design [7]. Screen-reader support, which is used by people with low vision, dyslexia, or who prefer listening to content, was facilitated by standard HTML formatting and alternative text for images. The website is also easy to navigate, with sub-headings, descriptive links, and multiple ways to reach each page. The table below illustrates the design principles we followed.
Users on the autism spectrum | Users with dyslexia | Users with screen readers |
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[1] PERT for Exocrine Pancreatic Insufficiency. WebMD. https://www.webmd.com/digestive-disorders/success-with-pert-epi (accessed 2024-06-14).
[2] Which Medications Contain Animal Byproducts, and Why? - GoodRx. https://www.goodrx.com/well-being/diet-nutrition/medications-that-contain-animal-byproducts (accessed 2024-06-14).
[3] Richards, N.; Wilson, J.; Platts-Mills, T.; Richards, R. Alpha-Gal Syndrome Complicating the Management of Suspected Pancreatic Exocrine Insufficiency. The American Journal of Gastroenterology. 2022, 117(10S):p e49, DOI: 10.14309/01.ajg.0000856912.36951.1f.
[4] Merriam-Webster. (n.d.). Homeschool definition & meaning. Merriam-Webster. https://www.merriam-webster.com/dictionary/homeschool.
[5] Homeschooling statistics in 2024 (latest U.S. data). Babwell. (2024, August 29). https://babwell.com/homeschooling/.
[6] Pun, K. (2016, September 2). DOS and don’ts on designing for accessibility. Accessibility in government. https://accessibility.blog.gov.uk/2016/09/02/dos-and-donts-on-designing-for-accessibility/.
[7] Web content accessibility guidelines (WCAG) 2.1. W3C Recommendation. (n.d.). https://www.w3.org/TR/WCAG21/.