As iGEM has stated, "Every individual, regardless of background or experience, should have an equal opportunity to engage with scientific knowledge and technological development." Take a look at what we've found, our goals for increasing inclusivity and equity in diagnostics through our project, and how we've begun to implement them!
I have always been conscious of nutrition and have worried about whether I am incorporating enough iron, calcium, vitamin D, vitamin C and more in my diet. Whenever I am experiencing symptoms of fatigue or dizziness I start to think about what I ate during the week to understand if my iron levels might be low due lack of iron rich foods in my diet. I always wished that there was a quick way to check my iron levels so that I could get direct results and adjust my iron intake accordingly.
I also began to see that not knowing iron levels affects many people. In high school, we had a blood drive every year. Many students wanted to donate blood and help those in need of a donation. However, I noticed that there were a lot of girls in my school that were not eligible to donate blood due to their low iron levels. I saw that low iron levels is a very prominent issue in women, which made the need for an iron level detection device even more necessary to me.
When I joined the iGEM team and had to begin brainstorming project ideas for the next competition, I immediately thought about the issue of iron level detection and how difficult and inconvenient current methods of detection are. I wanted to build a device that would be able to detect iron levels in a quick, easy, inexpensive, and non-invasive manner. My research led me to the world of biosensors and how effective and important they are in diagnostics and preventive medicine. I knew that a biosensor device would be a perfect method to achieve my goal.
After more research, we were not surprised but definitely disappointed to find that women, along with other disadvantaged groups, really do often go undiagnosed with iron deficiency and other essential mineral deficiencies (Moore).
To put the danger of this into context, the more well known symptoms of iron deficiency, like dizziness and dehydration, while dangerous, are not the only ones. For pregnant women, iron deficiency can lead to postpartum hemorrhage and overall maternal mortality (Derman et al). For the infants, mortality rates increase and they have a higher chance of getting childhood anemia (Derman et al). For many people, iron deficiency can result in a lowered immunity (NHS), mood destabilization, and depression (Healthmatch).
Part of why iron deficiency goes undiagnosed for women is because the symptoms like fatigue, brain fog, and dizziness (Mount Sinai) are just associated with being a woman instead of with the iron deficiency that causes it. This issue is even more prevalent for women of color, disabled women, and women and lower socioeconomic communities. This is because, even in 2023, most statistics are based on white men. This means that issues that could be disproportionately affecting women of color, disabled people, people in low income neighborhoods, etc might be going unnoticed because their diagnostic levels when iron deficient are at normal levels for white men.
Along with it being unlikely that doctors will listen to patients in disadvantaged groups about their symptoms, it is also difficult for many groups to properly access medical care. This could be due to a lack of funds (no insurance, minimum wage, etc.), a lack of time (working unreasonable hours to make the bare minimum), or being in an area with little to no human rights for an entire group of people (ie. women and low income communities in many parts of the world). When going to the doctor is not an option for so many people, it should be obvious that diagnostics need to be more available and accessible.
According to Path, “Approximately 47 percent of the global population has little to no access to diagnostics. This challenge is particularly evident in low- and middle-income countries, where only 19 percent of patients have access to appropriate diagnostics at the primary health care level.” Every person deserves to have a level of control over their health and well-being. No individual should be made to feel that their health can’t be a priority as it is of lower importance to engineers and scientists. We aim to increase the awareness of the lack of diagnostics and add our own contribution to the at-home diagnostics field through our inexpensive, non-invasive iron detection biosensor.
Our main goal for increasing inclusivity and equity in the scientific field through our project is by increasing the accessibility of diagnostics. We have been tackling this by reading literature written by people from many diverse backgrounds. There is something to be learned from every experience. We also make sure that our team is well rounded with people from many different communities. We recognize that as NYU students, most of us come from a privileged background. We try to combat this by listening and engaging with as many different opinions and perspectives as possible through literature and through our human practices survey. As our project was initially started after seeing the lack of awareness and diagnosis of iron deficiency for women, we’ve been making sure to reach as many women as possible, especially women of color and disabled women, to gain a better perspective on whether our project could be impactful and how we can improve it. Please refer to the human practices page for the results we’ve found so far! We hope to get more input as the year progresses as this is not a project that can or should be rushed.
Message from Amulya:
I have Crohn’s and I got diagnosed in the Summer of 2021 when doctor’s offices and diagnostic centers started opening up again to the public in the U.S.. My doctor has speculated that I went undiagnosed for at least a year, looking at the progression of my inflammation. Part of my delayed diagnosis was due to the pandemic shutting down all non-emergency blood work and doctors appointments in my area. Another part was due to me and other women normalizing the symptoms of iron deficiency. I, along with my peers, believed that symptoms like fatigue and weight loss were normal and simply due to stress, and I just never told my doctor about it in detail. This led to my blood work being done way later than necessary and by the time we saw that my iron levels were dangerously low and my T-cell count was very high, my inflammation had already progressed quite a bit. While having access to better at-home diagnostics maybe wouldn’t have fixed the problem fully as I also needed to change my mindset, it would have still made my diagnosis a bit quicker by avoiding the wait time due to the pandemic. I am very lucky to have proactive doctors that tested this as soon as they knew and could. I am also lucky that I generally have access to a doctor outside of the pandemic. Many people around the world and in my own country do not have this same privilege. If it was this difficult for me to get diagnosed with the many resources I have, it is easy to see how impossible it might seem for people with fewer resources. There needs to be more inexpensive, at home diagnostics for mineral deficiencies and common health markers. There also needs to be a more increased awareness on the dangers of ignoring symptoms and how a situation can get scary very quickly. I believe both need to happen together as it is not enough for people to be aware and not have testing options or be unaware of the options available.
Derman, R., & Patted, A. (2023). Overview of iron deficiency and iron deficiency anemia in women and girls of reproductive age. International Journal of Gynaecology and Obstetrics, 162(S2), 78–82. https://doi.org/10.1002/ijgo.14950
HealthMatch staff & HealthMatch Pty Ltd. (2023, April 12). Can anemia cause anxiety or depression? HealthMatch. https://healthmatch.io/anemia/can-anemia-cause-anxiety-and-depression#overview
Increasing access to diagnostics in LMIC. (n.d.). PATH. https://www.path.org/resources/market-failures-and-opportunities-for-increasing-access-to-diagnostics-in-low-and-middle-income-countries/#:~:text=Approximately%2047%20percent%20of%20the,the%20primary%20health%20care%20level.
Iron deficiency anaemia symptoms and treatments. (n.d.). https://www.nhsinform.scot/illnesses-and-conditions/nutritional/iron-deficiency-anaemia
Iron deficiency anemia. (n.d.). Mount Sinai Health System. https://www.mountsinai.org/health-library/diseases-conditions/iron-deficiency-anemia
Moore, B. (2021, March 18). Finding a better way to diagnose and treat iron deficiency in young women – pediatrics nationwide. Pediatrics Nationwide. https://pediatricsnationwide.org/2016/08/30/finding-a-better-way-to-diagnose-and-treat-iron-deficiency-in-young-women/