Alternative Inclusive design projects

We explored various project ideas to improve accessibility for different lived experiences, before ultimately pursuing musculoskeletal disorders. Nonetheless, a lot was learned from reflecting on why our other projects didn’t work out, and how they can be a starting place for other teams.

Part 1: Purpose and Overview

Our team had explored numerous ideas on how to improve accessibility for various groups before deciding to enhance accessibility in wet labs for individuals with musculoskeletal (MSK) disorders. The global iGEM community comprises many brilliant hardware engineers who work on complex projects designed for synthetic biology applications. Our purpose in sharing these project ideas is to advertise areas of wet lab accessibility that we believe may have an engineerable solution. Inclusive designs can drastically improve the quality of life for those whom society tends to exclude in their designs. By drawing attention to potential areas, we hope that engineers in our community will be inspired to work on an inclusive design project.

Part 2: Vision Project: Reasoning

In 2022, approximately 8 million Canadians reported having at least one disability. As of 2022, 7.4 percent of Canadians live with a seeing disability, with a 2.0 percent increase in five years, making it the third most increasing disability in Canada ([1]). Our goal with the Vision Project was to target youth aged 15-24 years, such as our own school community of university students, who may face constraints in wet lab work due to their disability. While the University of British Columbia Centre for Accessibility offers accommodations, our objective was to redesign a commonly used lab tool to specifically accommodate a visually-impaired stakeholder, an accommodation not currently offered.

Part 3: Vision Project: Why it Didn’t Work Out

While the number of people with disabilities had one of the largest increases from 2017 to 2022, we ultimately decided not to pursue the Vision Project due to various factors. In our early stages, we contacted organizations serving individuals with visual impairments, such as Seva Canada, to engage with our target group, build relationships, and identify a stakeholder with whom we could collaborate. Our largest roadblock during this stage was establishing a consistent relationship and finding a stakeholder to work with. While seeing disabilities affect 7.4 percent of Canadians, mobility disabilities affect 10.6 percent, alongside similar disabilities such as dexterity at 5 percent and flexibility at 10.9 percent. These three overlapping disabilities combined to create a larger target group for us to impact.

Part 4: Vision Project: Where Can Other iGEM Teams Build From

We aim to raise awareness about organizations that support individuals with visual impairments, inspiring other iGEM teams to explore accessibility-based organizations in their communities and engage with and collaborate with them. Teams can also connect with individual students in their campus community to work with. Additionally, we hope that our statistics raise awareness about the prevalence of visual impairment and encourage other iGEM teams to find ways to support this group and reduce the barriers they may face. While our idea was to design an accessibility tool adaptive for visually-impaired individuals, other iGEM teams are not limited to tool ideation. They could explore different concepts, such as tactile tools and labelling with high contrast.

Part 5: Amputee Project: Reasoning

In Canada, there are over 6000 upper-limb amputees, and in the US, they cover 3% of the total amputee population. In Canada, most of these individuals (96%) are diabetic, elderly, and have undergone surgical amputation for medical purposes ([2]). While being in a minority, they face numerous obstacles ranging from stigma and societal isolation to coordination challenges within their day-to-day lives. According to a study that looked at the change in adult upper-limb amputees’ emotional and social dynamics post-surgery, most individuals had a mixed set of negative feelings towards their amputation. In a group of 13 individuals who were interviewed, the experience was described as being emotionally distressful and reminiscing about it was painful ([3]). Their prosthetic also felt alien to them and even unsettling to look at in the mirror, and they often felt embarrassed to expose their prosthetic in public settings. This shows that the experience of upper-limb amputees within a larger society can be distressful compared to non-amputees, and their perceptions of themselves and others can change post-amputation. Although these feelings dissipated over time, their social experiences with others still felt shameful and were infiltrated with insecurity. Additionally, most individuals were able to return to work after their amputation; however, one person was forced to quit and give up on their dream job.

From a more technical perspective, this can be connected to working in a lab. Many fine motor movements are required for wet lab activities—at the most basic level, using micropipettes to draw and dispense precise volumes of liquid. This makes it significant to make the lab space more inclusive to these individuals, as their amputation should not hold them back from achieving their professional goals. In fact, a different study has found that upper-limb amputees may experience phantom limb, making it challenging to coordinate multi-modal motor actions ([4]). For example, an individual may have trouble both lowering a pipette into the solution while grasping it and withdrawing liquid sufficiently. A part of this is the nature of amputation, and researchers and surgeons are working diligently to design prosthetics that function better to address these issues. However, we aim to understand whether the nature of the tool used can be altered in a way that reduces phantom limb sensations. Such considerations are not entirely new, as researchers have been working to make lab tools more accessible to individuals with disabilities. For example, researchers added adaptive leverages to pipettes to position them within tubes at a correct depth and angle, which is a tactile aid for individuals with visual impairments and helps avoid contamination ([5]). However, we do not yet have a thorough description of how upper-limb amputees struggle with using pipettes — the phantom limb sensation is one example. Still, there may be others that we aim to become aware of through working with an upper-limb amputee, which will aid us in adapting existing pipettes to these individuals’ needs.

It is also worth mentioning that various types of prosthetics offer different levels of motor control, resulting in a unique experience for each person, depending on the level of technological aid available to them. This means we need to understand what resources are already available to the individual we are working with, so that we can focus on filling in the remaining motor control gaps by redesigning our tool of interest.

The literature, as mentioned earlier, has primarily focused on generic descriptions of fine motor movement limitations for upper-limb amputees; however, the experiences and challenges of upper-extremity amputees in a wet lab space have not yet been captured. UBC iGEM recognizes that to carry on the legacy of our project and many others in the realm of synthetic biology, technical wet lab work ---such as handling pipettes ---is foundational.

Part 6: Amputee Project: Why Didn’t it Work Out

Ultimately, we did not proceed with this project plan due to a similar issue as the vision project; we could not find a stakeholder. Our university has a UBC Bionics club, a group that is building a prosthetic arm for an individual with an amputation to compete in the global CYBATHLON competition ([6]). Our initial plan was to work with the club and its stakeholders to build an add-on tool for the pipette or a new pipette that would then allow it to be used with the prosthetic arm. However, scheduling differences between the two clubs prevented us from collaborating. We then examined whether there were open-source prosthetic designs that we could design our tool to work with, and we discovered e-NABLE ([7]).

e-NABLE is a volunteer-led organization that provides open-access prosthetic designs, readily available for anyone to print and adapt to their own or a stakeholder’s needs. Their prosthetics are suitable for gross grasp activities of light objects. However, based on previous testing and screening, they are unreliable for fine movements and the operation of tools or equipment ([8]). Other possible weaknesses of these prosthetics are the development of pressure sores (common among prosthetics) and wrist fatigue. Considering these discrepancies in accessibility of functional prosthetics with a low cost as well as the aforementioned struggle of amputated individuals with fine motor movements, these gaps need to be addressed to render the lab environment more welcoming for researcher amputees who need to operate with these skills. Due to these constraints and the inability to find a stakeholder, we decided to pivot our focus.

Part 7: Amputee Project: Where Can Other iGEM Teams Build From

Other iGEM teams may want to check if their university has an engineering bionics team or if there are any biomedical engineering projects currently underway with an amputee. From there, iGEM teams may collaborate with the group and the amputee to create a tool that works with a prosthetic upper limb and allows the stakeholder to perform. If the iGEM team finds a stakeholder with a prosthetic limb, it is best practice to work directly with their prosthetic so that the designed tool is most applicable to the stakeholder’s needs. We would not want them to have to switch prosthetic limbs to work with the iGEM team’s tool. If the stakeholder does not have a prosthetic limb, building a prosthetic limb from open-source designs, such as e-NABLE, would be beneficial, however it is important to note that e-NABLE states to work with a medical professional before using an e-NABLE device ([8]). Creating a tool that allows them to work in a wet lab and that works with the e-NABLE prosthetic would be the most effective approach. It is essential to note that although it is challenging to find an amputated individual as a stakeholder, it may be even more difficult to find one who has or wants to work in wet lab spaces, meaning you might end up designing a project that the user is uninterested in. This can also be an excellent space for opportunity, as your iGEM team would be at the forefront of improving inclusivity for someone who may have never considered it an option to work in a wet lab.

Part 8: Reflection

Ultimately, we decided to proceed with the development of our MSK tool due to the identification of a stakeholder and its potential for broad use. From the process of choosing a project, we have learned common pitfalls that may occur in the development of an Inclusive Design Project. Considering our most significant barrier was finding a stakeholder, we suggest that all teams in the future first connect with inclusivity groups, either through their university or through non-profit organizations, and conduct interviews to determine the limitations of different individuals in working in a wet lab or in science as a whole. University accommodations are best suited for this purpose, allowing you to advertise your team to students who are directly affected. Although these project ideas didn’t work for us, we hope that other teams may use this as inspiration to build upon our research.