Contents

Barriers to STEM

Introduction

Currently, disabled people account for only 2.7% of STEM professionals, compared to accounting for 20% of the working population^[1]. The lack of representation is not due to lack of interest however, as 15.5% of students entering undergraduate STEM degrees have a documented disability^[2]. Reasons for this difference can be explained through the lack of accessible lab experiences for students, a working environment tailored to the needs of non-disabled people, and a culture of ableism and discrimination that impacts both students and professionals^[3,4]. Additionally, many academics feel that their colleagues look down on them or view them as incompetant as a result of their disability, particularly if the person needs reasonable adjustments in order to complete their job^{[4, 5]}. Altogether, this creates an environment where disabled students, professionals, and academics feel unwelcome at best, and are bullied and mistreated at worst, accounting for the sharp decrease in the existence of disabled STEM professionals^{[4, 6, 7]}. Until barriers like this are addressed, it is unlikely that the percentage of disabled professionals and academics will increase, as a lack of interest or incapability is not the cause. As a result, our research aimed to investigate common barriers faced by disabled students and professionals in STEM, along with learning how these barriers affected them.

Methods

Participants in our research were members of the disabled community who currently or have previously worked in a STEM field. Interviews through either online meeting software, or take home questionnaires. Interview questions are detailed in the drop-down menu below and consist of a mixture of open-ended, qualitative questions in addition to ‘sliding-scale’, semi-quantitative questions. Responses to the former question type were analysed via direct comparison between participants and to relevant literature. Responses to the latter question type were analysed via statistical testing to determine relationships between attitude to disability and experiences of working in STEM fields.

Results

One of the first barriers brought up by our participants was how the working culture of STEM degrees and professions is frequently inaccessible to disabled people, describing how they were often expected to adhere to the same working schedule as their non-disabled colleagues, regardless of what was detailed in their accommodations, even if their disability made it functionally impossible for them to do so. Participants also indicated that supervisors and lecturers tended to have a limited understanding of disability, which often resulted in participants being questioned about their capabilities and if the adjustments they needed were actually required. When asked to rate their comfort within STEM fields, all participants rated their comfort as a 2 out of 5. In general, participants also found their field to be unwelcoming to them and other disabled professionals, stating that they often felt excluded or looked down upon by their colleagues. Participants stated that they often struggled to find workmates for specific tasks, and that their input in meetings is often overlooked. All participants stated that they felt that their colleagues and supervisors tended to infantilize them due to their disability, and that any contributions they made to both their research teams and the wider field were dismissed. Participants also stated that they frequently have to prove to others that they are in fact competent and capable of working in the field, despite giving no indication otherwise. When asked to rate how much they felt their voice was as equally respected as their non disabled colleagues, participants on average scored this question a 1.5 out of 5.

Participants also commented that they felt that their fields, and similar life and medical science fields, had issues with systemic ableism, which would make itself apparent in a variety of ways. Participants commented that they felt that a lot of research conclusions drawn in medical research often contained inherent biases that contributed to systemic ableism and the pathologicalization of disability. One participant even later sent a paper they had recently read to our research team as an example of these biases^[8]. Additionally, participants felt that the interests and input from patient populations is frequently discarded, instead of being used as a resource to help guide research goals.

When asked about the safety precautions in place for them in their workspaces and laboratories, participants gave more polarised answers, with the participants on average rating their overall feelings of safety as a 3.5 out of 5. Participants who felt comfortable and supported by their supervisors tended to give higher ratings of safety, on average a 4 out 5, and stated that they have received training on how to use the safety equipment and have been thoroughly briefed on the safety plans used in their laboratory. In contrast, participants who felt unsupported by their supervisors reported lower feelings of safety, reporting an average score of 3 out of 5, with some participants, particularly those who use mobility aids, stating that their workspace is inaccessible, many of the safety equipment in the laboratory is out of their reach, and there is not an evacuation plan in place that is suited to their needs. When asked what evacuation plans were in place for them, one participant stated that their laboratory’s current plan is for someone to pick them up and carry them down a set of stairs, leaving behind their mobility aids.

Additionally, a lack of accessible laboratory equipment was indicated as another barrier for participants that posed a safety risk for them, as it made it increasingly difficult for them to operate the equipment, leading to what they felt was a greater risk of accidents. When asked to rate how significant of a barrier the lack of accessible laboratory equipment was to them, all participants scored the barrier a 3 out of 5. However, when asked to score how much they felt that these accessibility issues make them feel they do not belong in STEM, participants' scores increased, to an average score of 4.5 out of 5.

When considering if the general attitudes to disability have improved across the STEM field, answers varied between participants. Participants generally agreed that attitudes towards disabled people have improved in fields that do not typically study people or medical conditions, such as physics or mathematics. However in fields that do study medical conditions, such as medical/pharmacological or life sciences research, some participants stated that they felt that attitudes towards disability were not improving, while the remaining participants stated otherwise. Of the participants who stated they felt attitudes towards disability were not improving, they stated that they have seen ableism directed to both other academics and to participants in research. When asked to rate the degree at which they felt attitudes in STEM were improving, participants on average ranked the improvement a 2 out of 5.

When asked what has improved their experience in STEM fields, participants overwhelmingly answered that the support from supervisors has been one of the largest factors that has made their experience in STEM more positive. Participants also stated that receiving the necessary accessibility accommodations and having an inclusive work environment has helped improve their experience working in STEM. However, participants still noted that these workplaces tend to be exceptions from the rule rather than the standard. Participants stated that in the future, they hoped that colleagues and supervisors would put in more effort to understand what it means to be disabled and how that may impact a person, that workplaces were more willing to put necessary accommodations in place, and improved safety plans that included safety precautions for disabled staff members.

Discussion

One of the barriers that was discussed by all participants was the strict adherence to 9-5 working schedules and rigid working environments, both of which are often not possible for disabled professionals, resulting in a higher percentage of disabled people in part-time employment compared to full-time employment^[2]. This is a barrier faced by not only our participants, but other disabled academics as well^[6,7,9]. Rather participants hoped for a more flexible schedule and working conditions, which they felt would help them retain a high level of productivity, while still being able to manage their conditions and prioritise their needs.

The lack of flexible working conditions can contribute to lower rates of employment in STEM or other fields, is often furthered by ableist attitudes found across the field^[10]. As reported by our participants, one of the largest barriers they consistently face throughout their fields is combatting the attitudinal barriers created by the assumptions of supervisors and colleagues that impact a person's ability to participate in the field, regardless of their actual qualifications. These barriers can appear as passive ableist comments, the assumption of incompetence and the constant challenge to prove disabled people are capable of excelling in the field, a refusal to provide accessibility accommodations, and social exclusion within the workplace^[11]. These barriers can not only make it difficult for a disabled person to find employment, as they are often overlooked in favour of other candidates^[11], but can also create a culture of exclusion where the disabled person does not feel that they are a member of the research team, or that they have a voice in the field in general.

Additionally, participants also discussed the presence of biases in their field, which often contribute to ableism that affects both the students and staff, but also the populations being studied. The biases found in academic research regarding disability has been noticed before by other researchers, particularly with neurodivergent conditions such as autism or ADHD^{[17, 18]}. These interpretations often contribute to systemic ableism and stigmatisation of conditions, which can be harmful to not only the disabled populations studied in the research, but can also work to create an “othering” environment in professional research fields that causes disabled professionals to feel unwelcome. Examples of these biases can be found in the paper sent in by a participant, which contained language like "deficit", "dysfunction", and "failure to consider social reputation" when describing the increased rates of alturism found in autistic people^[8,9]. By framing this characteristic in a negative manner, a bias is created in the paper, which subtly implies that autism, regardless of the positive characteristics it brings, is inherently abnormal and incorrect. This can cause further stigmatisation of the studied conditions^{[20, 21]}, and can make professionals with said conditions feel unwelcome in the field.

To help address these negative biases and prevent them from affecting research from the outset, it would likely be useful for research teams to create an advisory committee containing members from the affected population who could help shape research goals and ensure the research meets the needs of the patient population, identify potential biases when framing the initial research and analysing the results, and ensure that the results of the research cause minimal to no harm to the patient population^[22]. Examples of these advisory teams can be found in both the HOPE study^[23] and the reSTAR study^[24]. Additionally, the involvement of disabled academics in developing and administering the study has even been anecdotally noticed to result in an improved understanding of disability in the workplace, and can help non-disabled researchers to identify and address biases that may appear in their research^[17].

In terms of physical accessibility barriers, a lack of accessible safety or laboratory equipment is one of the most dangerous barriers faced by our participants. While laboratories and the staff within them often adhere to strict safety precautions to minimise the risk of accidents and injuries, these incidents still regularly occur^[25], and improper safety provisions can lead to severe injuries^[26]. However, as shown by the responses of participants, these provisions are not always in place, despite laws stipulating otherwise^[27]. The lack of safety provisions can serve as a deterrent for disabled people, as it is not reasonable to expect disabled people to put themselves at a heightened risk for injury than their non-disabled counterparts. These risks will also be further elevated by a lack of accessible laboratory benches or equipment, as students and professionals may struggle to operate the equipment in a safe manner. Additionally, the lack of reasonable safety provisions can also contribute to an environment of exclusion, as not only do the direct attitudes of colleagues and supervisors impact feelings of belonging, but so do physical accessibility barriers, which can cause disabled people to feel like a burden or an afterthought, instead of someone who is meant to be included^{[28, 29]}. Addressing these physical accessibility barriers is just as crucial as addressing attitudes towards disability when it comes to reducing barriers in STEM for disabled people, which is why our team decided to directly address some of these physcial barriers by designing hardware for micropipettes with accessibility as the focus.

Based on the responses of participants, a supportive work culture has been a major factor in improving the inclusivity of the workplace, particularly when participants had a supervisor that was supportive and understanding of their needs. The importance of supervisor support can be seen in the experiences of other disabled academics as well, who have noted how a good supervisor has allowed them to flourish within their workplace^{[6, 7]}. However, other barriers, such as physical accessibility barriers, attitudinal barriers, a lack of flexible working conditions, and other similar issues, must be addressed before disabled people are able to properly engage and have a voice in STEM fields. Ensuring that disabled people have a voice in STEM fields, will not only improve the diversity of ideas within the field, but will likely also improve the quality of research conducted within STEM fields.

Accessible Design

Introduction

When breaking down barriers in STEM for disabled people, creating spaces with purposeful accessible and inclusive design is paramount, as inaccessible environments not only impact disabled people physically, but also contribute to creating a culture of exclusion^{[3, 4, 7]}. To help address the inaccessible laboratory environment, we designed a hand grip to be fitted to a micropipette, with the aim of making sustained use easier and more accurate for disabled professionals. Micropipettes are some of the most commonly used equipment in microbiology laboratories, with 75% percent of life science researchers stating they used micropipettes for at least one hour a day, and 25% of the surveyed researchers stated they used micropipettes for over three hours a day^[30]. Despite the prevalence of micropipettes, they remain as some of the more inaccessible lab tools found in laboratories, due to the high level of motor coordination and grip strength to effectively use them, impacting a wide range of disabled professionals. To help address some of these barriers to STEM, our team developed a brace designed to fit around the body of a pipette to help make micropipettes more accessible to those with poor motor coordination, weak grip strength, and altered grip techniques.

During the earlier interviews, participants stated that some of the frequently encountered and difficult equipment to use was micropipettes and gel electrophoresis tanks, due to the high level of dexterity and motor coordination required, resulting in participants having to modify their technique in order to use the equipment. As a result, we choose micropipettes as the target of our research.

The Micropipette Brace

We used 3D CAD modelling to design a modified micropipette grip to make it more accessible to people with poor motor coordination, weak grip strength, or hand tremors. This micropipette grip is designed to fit securely around the base of the pipette body, and allows for the attachment of a velcro or elastic strap at both the top and bottom of the pipette, without interfering with the function of the pipette. Due to the position in which the pipette grip has to be attached, the body of the brace attachment has been made longer, so that a window can be added over the volume display, allowing for the pipette grip to be used with micropipettes that have both fixed and adjustable volume.

Methods

We utilised 3D printing to build and assess our prototypes. Once our updated tools were developed we tested their efficacy using a pair of disabled professionals in mock experiments to quantify the accuracy and therefore potential implementation of our products. Both participants have severe motor coordination issues, and one participant has conditions that affect their grip strength and technique. Both participants also have had different degrees of experience with using micropipettes, as Participant A has used micropipettes for over four years, whereas Participant B has used micropipettes for less than a year. Participants were asked to use a Sartorius BioHit P100 micropipette^[31] to measure and dispense distilled water in varying volumes (25 µl, 50 µl, and 100µl) into microcentrifuge tubes. The tubes were weighed before and after participants added any liquid using a high precision scale, so that the actual volume of water inside the tubes could be calculated using the density of water. Basic statistical tests were then carried out on the raw data.

Participants were then asked open-ended and semi-qualitative questions to assess the comfort and ease fo use of the micropipette brace

Results

Specific results from the technical assessment can be seen in Figure 4 below.

Analysis of the combined data set showed a changes in error based on when participants used the micropipette brace compared to without, as shown in Figure 5.

Following the technical assessment, participants were asked to give feedback on the micropipette brace. Both participants stated they found using the pipette with the brace to be more comfortable than just the pipette on its own, stating that the strap was very comfortable to wear, and that the texture of the collar was easier to grip compared to the standard pipette body. Participants also that the brace meant they no longer had to exert concentration on holding the pipette correctly when coordinating their movement, allowing them to direct their concentration to other, more important movements when using the pipettes, although participants still struggled with some of the other techniques, such as recognizing the first and second stops, an issue they have both consistently struggled with. Both participants also have tremors to some degree, which was very apparent when using the unmodified pipettes, and resulted in both participants struggling to attach pipette tips and correctly insert the pipette into the microcentrifuge tubes. However, when using the brace, both participants experienced significantly less tremors, and ended up only experiencing mild tremors when depressing the plunger, as opposed to continuous tremors when using the pipette. Additionally, for the participant with conditions that affected their grip strength and technique, holding a micropipette following manufacturers’ guidelines was virtually impossible, and instead the participant had to hold the pipette using only their thumb, first, and second fingers, rather than their whole hand (Figure 2). When using the pipette brace however, the participant was able to hold the pipette correctly (Figure 7), which they reported to be much more comfortable and easier to use. As a result, participants stated that the micropipette brace helped to address their accessibility needs, and that they strongly supported the future presence of the pipette brace in laboratories.

Discussion

The results from the technical assessment suggest that the micropipette brace helped to improve the participants accuracy, as the participants average volume was consistently closer to the goal volume when using the brace compared to without. Additionally, the precision at which participants operated the pipettes improved considerably, as participants more consistently hit the target volume, and the range of actual volumes the participants pipetted decreased with using the micropipette brace. This improvement can likely be attributed to the brace helping to address some of the motor coordination issues faced by the participants, allowing them to better focus on other movements. Additionally, both participants had a mild tremor that affected their ability to use the micropipettes, which was made more pronounced when the participants were engaging the muscles involved in pipetting.

That being said, in-depth statistical analysis of the technical assessment could not be done, as the small sample size greatly limits the tests that could be carried out. However, the results of the assessment still show improvement and future studies carried out at a larger scale could likely yield more significant results.

When it came to addressing issues with grip strength and technique, the participant that had previous issues with grip technique seemed very satisfied with the brace’s function, as the brace meant that they were able to hold the pipette correctly, making the pipette easier and more comfortable to use. The participant also felt that the brace helped improve their accuracy, which is supported by the data from the technical assessment. Additionally, the ease of gripping the pipette was also likely improved by the texture of the material used to make the brace, which participants reported was easier to grip than the slippery texture of a standard pipette body.

When asking for feedback regarding the pipette brace, participants noted that the thickness of the brace occasionally made it more difficult to press the button to change the volume of the pipette, however the participants also quickly found that the brace itself could be used to gain more leverage against the button by lifting the brace up over the button and using it to depress it. Future prototypes of the brace would likely have a button lever placed over the button to make it easier to use.

While the development of a pipette brace may seem simple, the impact that such accessibility tools have on disabled students and professionals is immense^[1,3]. These tools allow students to properly engage with and gain experience from laboratory based learning opportunities, allowing them to continue pursuing fields they are interested in. Additionally, as shown by the section above and the research of others, lack of accessibility is often one of the largest barriers students face when completing a STEM degree, and can lead to students avoiding STEM careers, despite being otherwise qualified ^{[3, 4]}. By developing a micropipette brace, life science fields can suddenly become a much more viable career path for disabled people. In addition, cost often serves as a barrier when looking for accessibility tools, as laboratories frequently do not want to dedicate funding for accessibility tools, and students and professionals cannot always afford the tools they need^[7]. However, our pipette brace design is available as an open source file and is compatible for a wide range of micropipettes, allowing the brace to be rapidly integrated into a wide range of laboratories. Additionally, the brace is incredibly cheap to print and put together, with our current prototype costing less than £2.00 to produce, making it easily accessible to laboratories on a budget. Altogether, this research suggests that a micropipette brace can help to improve laboratory accessibility for a wide range of disabled people.

Additionally, the availability of equipment that suits a person’s needs can often increase their feelings of belonging, contributing to disabled people joining and staying with the field. Similar equipment and adjustments can be found in laboratory coats, which are typically very difficult for wheelchair users to put on and are often ill fitting^[32], micropipette guides for blind and visually impaired students, who often struggle to identify the correct wells in a 96-well plate^[1], and larger, secondary microscope control systems^[3], which can be beneficial to people with limited upper limb mobility and strength. However, despite the success of these tools in preliminary testing, many of these tools are not currently available for purchase.

Syn-Bio and Cures

Introduction

Since our project has potential future applications for nerve or tissue replacement, and thus the potential to cure a range of disabilities, receiving input from the disability community was essential for deciding whether to continue pursuing the medical applications of our project after iGEM. Cures, as defined within disability studies, and the definition which is used in this research, is the act of removing a person’s permanent disability with a simple, effective, and safe treatment^{[33, 34]}. This definition of cures typically does not include terminal conditions, or temporary injuries or illness. Within the disabled community, the discourse surrounding cures has had a long and varied history, particularly as disability rights movements are gradually transforming the societal beliefs surrounding disability from something to be ashamed of to something to be celebrated^{[33, 35]}. With this growing positivity and shared culture developing around disability, the recognition of disability as a fundamental aspect of a person’s identity is becoming increasingly common^[36]. To a non-disabled person, cures are often viewed simply through the lens of medical necessity, and with the idea that non-disabled bodies are the standard. For the disabled community however, cures are much more nuanced than they first appear, as not only should the medical implications be considered but the social ones as well. When receiving a cure, a disabled person would in theory gain full bio-typical function, but in doing so, their identity would fundamentally change, and they would lose their connection with the shared culture of the disability community.

To learn more about the current views of the disability community, we individually interviewed a group of disabled students about their opinions on cures. All participants are permanently disabled, however all participants have also experienced some form of significant but temporary injury or illness. Questions focused on their general opinions regarding cures and their motivations for receiving/refusing cures, identifying what they felt was a more worthwhile use of resources currently used to develop cures, and their opinions on synthetic biology’s involvement in the development of cures and treatments.

Methods

Participants were members of the disabled community, including both those with and without a background in a STEM field. Interviews were conducted (using the questions detailed in the drop-down menu below) and results analysed in the same manner as the other interview. Analysis aimed to determine any relationships between attitude to the medical system’s treatment of disability and perception of ‘cures’ and the involvement of synthetic biology in relevant research.

Results

When asked about their general opinions regarding cures, all participants emphasised that even if cures were not a treatment they were interested in pursuing themselves, they believed that choosing to receive a cure should be something each individual should choose themselves, rather than a treatment that is forced upon them. Additionally, all participants felt that the current approach of society towards cures did not consider alternative ways to improve a person’s quality of life without ridding them of a disability. A common theme discussed in the interviews was the lack of acceptance and understanding from society regarding disability, highlighting in particular the lack of effective social support systems, which often has little room to understand why a disabled person may or may not wish to be cured. This in turn can create situations where looking for cures can seem like the only option, even if it is not ultimately desired by the person. Interviewees instead advocated for increased acceptance and more effective tools that are widely available for disabled populations, so that patients can properly consent to treatment, whatever that choice may be. That being said however, participants still supported treatments for terminal conditions, such as cancer, and for temporary illness and injury, such as ACL tears, broken bones, or infections.

When discussing the prospect of cures for physical disability and neurodivergence, the responses were incredibly similar, despite the vast difference in the conditions and their impact on the person. Like the previous section, all participants once again emphasised that cures should be a personal choice. For both sections, the majority of participants stated that cures were not something they were interested in pursuing on the basis that being cured would fundamentally change them as a person, and that as long as they receive reasonable adjustments, have an accessible environment and effective management tools, they did not really see the need to be personally cured. Participants stated however that there are still downsides to being disabled that cannot be currently effectively managed or worked around, such as chronic pain and fatigue associated with physical disabilities, or severe sensory issues associated with neurodivergent conditions. Participants unanimously stated that if chronic fatigue and chronic pain could be cured or effectively managed, they would likely pursue treatment for those symptoms specifically. For neurodivergent conditions, participants were split on whether they would receive treatment for sensory issues, with some participants stating their sensory issues affected their perception of the world, and thus curing it would change who they were, while others felt that the sensory issues they experienced were too unpleasant, and that their lives would be better without them.

Compared to the responses regarding questions about physical disability and neurodivergence, responses to the section regarding cures for mental illness deviated heavily. In the previous sections, the general consensus on personally receiving cures was that it was not something they felt would be particularly beneficial or necessary for them, as doing so would fundamentally alter their identity, and accessibility and adaptations meant that they already had a good quality of life. When asked the same questions for mental illness however, the majority of participants stated that if a cure for their respective mental illnesses was offered to them, they would choose to take it. Some participants commented further, stating that they did not feel that being mentally ill was part of their identity and that receiving a cure would improve their quality of life, as they did not feel that there were any effective tools or adjustments that would otherwise address their issues effectively.

Conversely, the minority of participants who declined receiving a cure stated that although being mentally ill has brought many unique struggles into their lives that they do not necessarily enjoy, they felt that mental illness has become an intrinsic part of their identity, and that they would be a different person if they were cured, stating that their experiences have made them more patient and understanding. Of these participants, many have had some form of mental illness for the majority of their lives, and that they felt that overtime, they have developed useful tools and management strategies to cope with mental illness. Interestingly, these participants made a distinction between current medications for mental illness and an all-encompassing cure, describing current medical treatments as tools which can make mental illness easier to cope with, rather than something they take with the goal to remove the condition entirely.

When discussing the impact and use of synthetic biology and cures, participant’s support for synthetic biology did not differ from their support of other research fields in the development of cures, however the majority of participants did not feel research into cures should be a priority, regardless of the method used or field conducting it.Instead, participants hoped that the resources dedicated to developing cures could be reallocated to focus on treatments for specific symptoms, such as chronic pain, inflammation, or brain fog, which could be used by a wider patient population. When asked to rate their support for the medical system to focus on the development of tools to improve a person’s quality of life over developing cures

In terms of the use of synthetic biology to develop medical diagnostics and therapeutics, which covers two of the most popular tracks in iGEM, participants stated that they generally supported the application of synthetic biology in that manner, provided that the development of these tools was with the goal of improving the quality of life of disabled people and making these tools as accessible to people as possible. Participants cited barriers commonly found with new treatments like this however, such as the high cost associated with medical care and the requirements needed to receive certain treatments, such as age or level of deterioration. Participants also stated that the development of these tools and treatments should be under the guidance of patient populations, something that participants felt was severely lacking in current medical and pharmacological research, in terms of both the presence of disabled researchers, and input from patients. Participants also indicated a general distrust of the medical system and research, which has partly been caused by systemic ableism they have faced when seeking treatment.

Discussion

The results of this research aligned heavily with previous research conducted on related topics, such as the work of Hahn and Belt into the impact of identity on a person’s desire to receive cures, which similarly found that the extent to which a person identified as disabled and their mindset around it was a strong indicator of if the person would pursue a cure^[36]. However, this research did not thoroughly delve into the complexities of this identity, or how the different facets of this identity impact a person’s desire for a cure. Throughout our research, none of our participants answered the questions regarding cures with a simple blanket answer, and instead emphasised the importance of bodily autonomy and the current lack of it in discussions around cures. This is a feeling that seems to be common among the wider disabled community, based on both the responses from our participants and from the writings of others, such as activist and speaker Emily Ladau or disability studies researcher Sidney Jones^{[35, 38]}. Both of these authors acknowledge the struggles they have experienced and will continue to experience in their lives as a result of their disabilities, and that even their own internal dialogue can become conflicted when considering cures for themselves, noting that sometimes they feel it would be nice to no longer be disabled. Yet these authors still overwhelmingly state that being cured would be unnatural for them and that similarly to our participants, they do not think they would be the same person if they were no longer disabled, and thus do not ultimately wish to be cured. However, like our participants, they also acknowledge that cures should always be a personal choice, and not one influenced by society or others. Jones even takes it a step further, and describes how cures can easily become violent and coercive through forced medical treatment and inaccessible, stigmatising societies^[35]. Instead, both authors, and many others such as TJ Desalvo and Arielle Silverman^{[34, 37]}, advocate for a more inclusive society and the redirection of some of the resources dedicated to identifying cures. These authors hoped that future research would instead focus more on improving the technology, diagnostics, and therapeutics available to disabled people to improve their quality of life, so that they can make an informed and fully consensual decision on whether they wish to be cured. These beliefs mirrored those of our participants, who regardless of their opinions on actually receiving cures, all advocated for improved accessibility and a more inclusive culture.

Additionally, the result of this research, and the research conducted above, emphasises the continued importance of Human Practices being integrated not only in iGEM projects, but in every form of research, particularly in research that will have an impact on disadvantaged and minority populations. Throughout these interviews, participants, both from the perspective of patients and of researchers, continuously supported the greater involvement of patient populations in research, with the hope that more useful and beneficial research would be produced, and to reduce or prevent any harm that may occur to patient populations as a result of the research.

Ultimately, the results of our research and the opinions shared by other authors suggest that cures should not be the only focus of research, regardless of the involvement of synthetic biology or not, and that instead, more research should be focused on diagnostics and therapeutics designed to improve a person’s quality of life and that can be applied to a wide range of patients. When it came to cures for disability versus treatment for temporary injuries or illness however, participants responses suggest that a research should continue into treatments for those conditions, suggesting that future medical applications should be focused on using our material to help improve patient recovery following illness or injury, such as treatment for ruptured tendons, or peripheral nerve damage from recent injuries. Finally, regardless of the type of research being conducted, the outcomes of our project further demonstrate the increased importance of human practices in research, with particular emphasis on the involvement of the affected patient populations.

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