Team:AFCM-Egypt/Human Practices
Human Practices
The TNBC Framework
Introduction to TNBC
Since last year (2020), we have committed ourselves to design a vaccine for Triple Negative Breast Cancer (TNBC); in light of the fact that it accounts for most of the occurring malignancies in Egyptian women.
It came to our minds that it will be best, most memorable, and most significant if these four initials become our framework; to always have in our thoughts and to guide us throughout all phases of our work, both the technical and the human practices.
In order to make the most of the early stages of innovation, a framework is essential to ensure that an accountable research method is being considered throughout the project.
TNBC in our framework stands for :
- T: transparency as it represents how we want the healthcare system to be with patients.
- N: Novelty is to make a curing vaccine not just immunizing for breast cancer and we will have to be novel and creative because new products will require new ideas.
- B: benevolence is good; it stands for all the little un-knowledgeable contributions before the relatively bigger achievements that our team members will have to make for the sake of science.
- C: cost-effective; this of course is so important relating to our bioentrepreneurship as we hope to one day transport our product at an affordable price to the hands of patients.
Those four words lead our path through this years’ work, in hope to give our best and achieve as much as we can.
Medical students and graduates survey
In view of the fact that one of our goals this year is to further spread the knowledge about Synbio, genetic engineering, and IGEM in Egypt. The main target of this survey was to study and assess the level of education that people who work in the medical and scientific field have on genetic engineering and Synbio, in addition to learn about how far they are willing to indulge and accept their applications in the various aspects of their work and life. We printed 500 copies of our survey to distribute them ourselves among the utmost number of people we can have access to, explaining the survey, making sure to take their opinion and helping them with any inconvenience they might encounter while filling in the survey.
We have took the survey to many facilities that are chiefly interrelated with the fight against breast cancer, for instance, the specialists in Ghamra hospital and Baheya organization, which is a non-profit hospital for early detection and treatment of breast cancer, where we kindly asked the staff to fill in the survey. In addition, we intended to involve the new generation of upcoming doctors to take part in our survey by distributing it in more than one university including our own, AFCM ( Armed Forces College of Medicine ) as well as Ain-Shams university, both are leading universities when it comes to medicine, genetic engineering and clinical research in Egypt.
We are keen on protecting the rights and welfare of people who have participated in this study; therefore we made sure to submit our survey to attain the IRB approval before carrying on with our investigation.
The following pie chart includes information about students and graduates as regards to the percentage of the females besides to the males among the survey. The results depict that females had the upper hand in filling out our surveys, additionally college students participated more in our survey study than the graduates and the operating doctors.
This graph represents that the majority of our surveyor’s ages are between 21-25, with the uttermost of the surveyors being college students in both fields of medicine and biological sciences,with just less than one fourth of the surveyors being college graduates and operating doctors.
The level of knowledge about Syn-Bio is represented on the y-axis, while the number of people in each category is represented on the x-axis as follows:
The level of knowledge about Genetic-engineering is represented on the y-axis, while the number of people in each category is represented on the x-axis as follows:
The raw data we collected and the survey results indicated that the surveyors either had great knowledge about both genetic engineering and Syn-Bio or that they did not . Upon the interpretation of those results, we found that the age range with the least knowledge was of those who aged above 48 years old. And to our surprise, only a few people who knew about synbio were aware of its applications in different fields other than the medical branch.
It is thrilling to see that the majority of opinions on the applications of genetic engineering came out open and positive; however we couldn’t help but notice that the percentage of those who had a “no specified” opinion came second, which indicates that further education and understanding is needed on the topics of genetic engineering and synthetic biology; for they contribute majorly to the scientific research conducted nowadays, in addition to the great impact they will hold on and bring to the future.
For a deeper comprehension, we included a question about reasons behind the abstention of genetic engineering and synthetic biology. The primary reason according to the answers turned out to be the fear of the uncalculated, or in other word, the unexpected outcome of gene manipulation, followed by ethics and religion. And surprisingly, cost is the least percentage.
Beside our quest on this survey to know how well-educated the medical personnel are on the topic of genetic engineering and Syn-Bio, we aimed at increasing the outreach of this knowledge as well as aiding people to understand and learn more. Therefore, we asked the surveyors what they think is the most efficient way to convey this knowledge to other individuals whether they are in the medical field or not, their answer that came on top was to further include topics on genetic engineering and synthetic biology in school curriculum. Accordingly, we encouraged the school administrations, which we hosted at AFCM during the synfair, to use our simplified presentations and educational materials and to include them in the curriculum of their students of all grades; in hope of providing a greater chance for the new generations to understand and know about genetic engineering and syn-bio starting from an early age.
Baheya Foundation for Breast Cancer
On the 13th of june, the AFCM-Egypt IGEM team had the pleasure of visiting one of the most influential and prestigious breast cancer institutions that provides integrated services for their cancer fighters and survivors. Baheya is well-known for offering treatment and free mammography for early detection not only in Egypt but in the whole area of the Middle East.
Our visit to Baheya came in handy as it allowed us to realize how challenging the therapeutic journey of breast cancer fighters and their needs are; this contributed to the evolution of the "Benevolence" pillar of our framework. Following our visit to Baheya foundation, we got a deeper insight on how the directors, doctors, staff (many of which were former breast cancer survivors) as well as “the warriors'', the name they like to call patients by in Baheya, all together work in harmony in a very bright and cheerful atmosphere.
The tour started with a lecture where we were told the story of the start of the foundation. In the beginning, Baheya was just a dream of a diseased woman who had to travel overseas to find a cure for her breast cancer. Later after her death, her children decided to honor her memory by turning their family home, in which their mother lived for over 60 years, into the astounding Baheya foundation.
We got truly amazed and influenced by the mindset that Bahya’s administration and staff have; for instance, they are always keen on the continuous development and improvement of their facilities and units; this can be clearly displayed in how Baheya started with only one mammography machine back in 2015 and now it is not only one of the leading institution in cancer fighting Egypt but also they are expanding to the extent of launching a new branch in another city called "El-Sheikh Zayed" in Egypt, and we are delighted to say that this new branch will be open with full power very soon. Moreover, they kept on stressing that more efficient therapy provision can be achieved more easily through reaching out to patients rather than waiting for them to advance.
Later during our visit, we met some of the warriors and had some discussions with them. They told us about the struggles they face in different aspects of their daily lives because of the disease and how Baheya helped them to overcome those hardships. When it comes to those warriors, Bahya is much more than a hospital where they receive therapy; it has become their home, a place where they seek comfort, peace, love, and reassurance that everything will be alright. Bahya, besides the physical treatment, takes good care of the mental and psychological health of the warriors; an example of this is an elderly survivor, we are quoting her description of Bahya:“We are more than a family here at Baheya”. This warm feeling was notably attributed to simple activities that patients were given the opportunity to practice over the course of their stay; some of these practices are netting, beading to make handmade bracelets and keychains, and they would sell their products and make money to support themselves and their families. In addition, monthly coupons are gifted to the warriors to shop in Bahya’s local store where they can buy what they desire for their loved ones. Also, Bahya organizes field trips inside and outside of Cairo for her warriors. All of these activities, along with the love and care given to the warriors are translated into a sense of warmth and self love that spreads among all the warriors granting them the feeling of being part of one big family at Bahya. Our day spent at Bahya made us realise that there is much more to the treatment process than just a drug.
Our Discussions with the warriors in their netting rooms
Baheya's expansion and outreach plans
The visit to Baheya's foundation made us understand that cancer is a wide sea of different sciences that still need to be explored and conquered in all ways possible.
Vector Vaccine Survey.
Surveys are a common technique for iGEM teams to undertake human practices and gather inputs from the public to reflect upon their studies.
We decided to form a 25 question survey divided into 4 sections regarding our new TNBC vaccine, which happens to be a vector vaccine like the Janssen/Johnson & Johnson COVID-19 and the AstraZeneca coronavirus vaccines. We aimed to investigate the general public’s understanding of this type of vaccine. The survey was printed in both Arabic and English to downsize language difficulties.
However, while this task is seemingly simple, it was totally challenging as it went through multiple stages of development and critique by the scientific team,the PI,our sponsors,our advisors and finally aided by the influential role model Sarafina Nance.
Hence, we included a question on genetic counselling in our survey and incorporated it in all of our subsequent outreach and awareness initiatives after we discovered that genetic counselling was genuinely underdeveloped in Egypt.
After having the IRB approval, we started distributing the printed survey during our visit to Ghamra hospital and we shared it with the Baheya foundation that we visited earlier, in hope of reaching out to the largest number of audience, since both institutions form the biggest part in the conjoint orchestrate effort of battling breast cancer not only in Egypt but in the Middle East and Africa.
The participants were interviewed face-to-face for ten minutes to make sure everything was crystal clear and explained for the diverse levels of education of the audience as our “Pre-survey” results stated that 33% of our audience had a level of education less than high school and 12% illiteracy.
Moreover we went after more respondents to ensure that we facilitated more engagement by the public and had reliable statistics. We distributed the questionnaire via our social media accounts and at the Faculty of Medicine - Ain Shams University which is one of the largest institutions in medical education in Africa and the Middle East, founded in 1947.
We distributed more than 600 surveys with various forms with about 500 valid respondents and after analysing and taking a look at the results we noticed few patterns.
First of all,The majority of the respondents were from the age group of 46-55, followed by the age group 36-45, which deviated from our expectation since we thought that the majority would be young adults of younger ages.
After we paved the road for better understanding of the vector vaccine and made sure everything was clear for the participants, we needed to evaluate the willingness of the crowd to get vaccinated. and start taking this type of vaccines into a further step as we currently are trying to introduce our vaccine model into the initial stages of the therapeutic development pipeline.
Furthermore, The results of the survey indicated that only people who expressed their true concerns about breast cancer disease had the tendency to get vaccinated.
Last but not least, and as a part of integrated human practices we received assistance from the egyptian american scientist MSc , Ph.D candidate ,and the cancer previvor Sarafina Nance who stated that "Genetic counseling is really step zero of the process".
Upon Nance’s recommendation, we edited our survey to involve a question concerning people’s knowledge on genetic counselling. According to the results analysis, 48% of the survey takers had no idea about genetic counselling and only 16% had discussed it with their physician. These results shed light on the need of spreading more awareness in our community regarding this crucial step in the journey of cancer fighters.
Ghamra Hospital Visit
Idea!
In the heart of Cairo, Ghamra Military hospital stands out as one of the eldest hospitals with a large number of obstetric and gynaecology clinics rendering services for hundreds of patients, mainly females, with different age groups on daily basis and fortunately, it is one of the academic hospitals where students from our college receive their education and training. All of these factors made it our topmost candidate to engage with the society.
Prompted by our framework TNBC, our visit to Ghamra was typically conforming with the letter 'T" which stands for transparency in our work. Our main aim was to collect information about the average population knowledge regarding breast cancer and possible vaccination methods in the form of survey distribution and face to face interviews, this information would later affect many entrepreneurial decisions concerning the initial stages of the therapeutic development pipeline. We went to Ghamra because we believed that it has a wide range of social, economic, and age groups.
The Process
On the 15th of July, all of the AFCM 2021 team were present, and we started by installing our booths on 3 different floors, mainly in the waiting area of the patients just to ensure not to waste patients' time. Surveys were distributed in English and Arabic languages and the team members divided themselves and started making 5-minute face to face interviews, this allowed us to capture the interviewees' emotions and keep them focused all the way through. We collected more than 150 responses from Ghamra's patients and the main notation that we considered was that the general trend of the elderly females (65+) had little to no interest at all in trying a novel vaccine for cancer, whereas on other hand, younger females showed more interest in our therapy.
The Ending
To make the day more profitable, we utilised the "B for benevolence" from our framework by spreading awareness about breast cancer through displaying short videos on the hospital screens that mainly included the disease prevalence in the country, symptoms, importance of early detection, and how to perform breast self examination. A recapitulative lecture was given at the end of the day by one of our team members then a general discussion was opened where we received and answered patients' questions.
