Team:BioIQS-Barcelona/Integrated HP
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Outside the Lab | Integrated Human Practices
Have a look!Thus, an interview with celiac patients was indispensable for us to expand our knowledge on the problems that they still have nowadays, and make sure our project was on the right track.
Other types of research were also required to improve our idea, such as investigating the current products in the market focused on gluten detection...
As well as interviewing Bioethics professors to know their opinion on the sensor and the concept of personalized medicine, which is growing rapidly nowadays.
All these essential steps made us gradually modify the design of the sensor to reach the final idea, the in situ personalized kit for the detection of gluten reactive epitopes.
Brainstorm
CD became part of our group
Understanding the Disease
Main Problems
Sensor against gluten reactive epitopes
Personalized sensor
Meeting with Dr. Marjan De Mey – Ghent University
“A man may die, nations may rise and fall, but an idea lives on.” – John F. Kennedy
Our team had the pleasure of receiving Prof. Marjan De Mey, from Ghent University! She is the group leader of the Centre for Synthetic Biology and she has participated in the iGEM competition twice.
During the meeting, we received some valuable advice for our project. She gave us her feedback and explained how to face this experience. We also had the opportunity to ask her some questions and discuss the purpose of Synthetic Biology.
She gave us many useful tips on how to choose the track the project and how to improve brainstorming. She also guided us by explaining the first steps of fundraising and team coordination. All her experiences in previous iGEM competitions and the funny stories made us continue our search for the perfect project with more motivation and energy!
Thank you so much for your help Marjan
Celiac disease diagnostic
“People’s minds are changed through observation and not through arguments.” – Will Rogers
After one of the members of our group became celiac, we decided to pore over his diagnosis to understand all the parameters and requisites needed for being considered celiac or at least having a predisposition to develop this disease.
We observed that, in blood tests, only the presence or absence of certain HLA alleles is examined, namely HLA-DQ2, HLA-DQ8 and HLA-DQ7. This is because 99.5% of celiac patients carry one of these alleles, and so, if the patient doesn’t carry any of these, celiac disease is unlikely to appear, as the above predisposition alleles are an almost essential prerequisite for the development of celiac disease. Due to legal reasons, we are not allowed to show the real diagnosis, but the following picture illustrates how the results are presented to verify if the patient has a predisposition to develop celiac disease or not.
In the case shown, the patient will supposedly not be able to trigger celiac disease because there is no presence of the HLA alleles responsible for the disease. Thanks to the diagnosis of Roger Compte and the few doctors from Sant Joan de Déu Hospital that helped us to understand the main strategy in the diagnosis of this disease, we could focus our project to the usage of HLA molecules.
Apart from this, there are other methods to be diagnosed as a celiac patient, such as a serology test or a biopsy of the small intestine (histology), but if you are on a gluten-free diet these are of limited value. Also, the last two methods are notably more aggressive than the first one, which can be done only with a saliva sample.
Meeting with Dr. Carme Farré – Hospital Sant Joan de Déu
“Never stop learning; when we stop learning, we stop growing.” – Loyal “Jack” Lewman
After working hard and gathering information about celiac disease, we organised a meeting with Dr. Carme Ferré from Sant Joan de Déu Hospital. She is an expert in celiac disease and she is focused on the diagnosis and treatment of the disease during childhood.
We prepared a presentation to explain our goals to her. She offered a critical point of view on the disease, and told us which principal obstacles we needed to overcome. We found this experience highly significant to our progress in constructing our idea.
This meeting helped us to redirect our project in the right way, focusing more on the needs of patients suffering from this disease. It also made us understand that, although it’s considered a mild disease, since it is not fatal and severe damage can be avoided; it has a great impact on our society due to the high number of people suffering from it.
In the case shown, the patient will supposedly not be able to trigger celiac disease because there is no presence of the HLA alleles responsible for the disease. Thanks to the diagnosis of Roger Compte and the few doctors from Sant Joan de Déu Hospital that helped us to understand the main strategy in the diagnosis of this disease, we could focus our project to the usage of HLA molecules.
Another thing that we have to consider when we talk about celiac disease is that the damage of the small intestine can lead to colon cancer, and so a disease which is considered mild can turn to a serious illness in a few years if gluten is not strictly removed from the diet. These details made us realize how damaging a cross-contamination or non-reliable gluten-free food can be for these patients.
Thank you so much Carme for your valuable advice, we learned a lot from you!
Celiac disease – face to face
“The art and science of asking questions is the source of all knowledge.” – Thomas Berger
To meet the needs of stakeholders and increase the reliability of our results, we decided to focus our project on a sensor that not only detected gluten but also detected specific epitopes of this molecule. This decision was taken to grant our main target, celiac patients, the comfort that they deserve in life.
Another reason that made us decide to use sensors was due to the “sensor revolution” that is occurring nowadays. Sensors are increasingly common in our daily lives, and this change is caused by rapid technological advances. For this reason, these “intelligent” devices that can be connected to our smartphone through a simple app, improve the life of patients in the easiest way, and are an attractive product for potential investors.
Every day, there are more diagnostic companies focused on the production of new sensors, and there is a lot of technology dedicated to developing these types of sensors, which means more stakeholders that we have to take into consideration. The following interviews to different celiac patients allowed us to identify their main
needs and, at the same time, better understand their experience from the day that they were diagnosed until now. Furthermore, we asked them for their sincere opinion about our project and the sensor, in order to make sure that our product would have a positive impact on their lives.
Victoria Longan – 23 years old
I am not exactly sure at what point in my life my celiac disease actually developed. But I was diagnosed at 20 years old and had always suffered from intestinal pain.
That I wouldn’t be able to eat 90% of what my diet is constituted of. It would be very hard to go out for lunch and dinner...
Very difficult, I actually have decreased its intake but haven’t been able to absolutely cut gluten out of my diet.
I think it really would for those who had severe gluten intolerance. It would allow them to eat peacefully without the fear of feeling extremely bad afterwards.
I think we’re on our way, many improvements have been made these last few years, and lots of restaurants have taken the step to include gluten-free options. Although, I personally think there’s still much progression to be made to fully adapt to those with the disease and help them in their everyday life.
Gerard Colomer – 24 years old
They diagnosed me when I was 5 years old.
I was too young, so I wasn’t able to think about the consequences in my life after my illness was known.
At home was easy, because they quickly adapt to my necessities. The most difficult part was to eat in the school, because 17 years ago, the illness wasn’t as well-known as today.
If it’s an accurate one yes, because celiac people will be able to check if the product is gluten free.
We can always improve the life of celiac people, because nowadays eating out is still a preoccupation for celiac people. However, Spain is one of the bests countries in Europe where you can find restaurants certified by the celiac association, where as in France is still difficult to find certified restaurant where you can eat safely.
Roger Compte – 23 years old
They diagnosed me when I was 22 years old, but it took a month to find out that I had celiac disease.
I will miss bread and pizza, but mostly my friends and I will have to change the places to eat out.
Some stuff is easy to exchange for a gluten-free options but others are almost impossible. Besides, cross-contamination are even harder to identify.
Of course, I have.
I think it would be great for food and even better for beer. Strong debate about beer and some celiac patients.
Luckily is getting much better but there's still too much to improve.
Research of current sensors - the NIMA sensor
“Continuous improvement is better than delayed perfection.” – Mark Twain
To be able to satisfy all stakeholders, first of all, we had to know the weaknesses of the current sensors in the market in order to offer not only a more specific sensor but also an overall improved one. For this reason, we looked into the most well-known sensor, the NIMA sensor. The NIMA integrates food processing, gluten detection, result interpretation and data transmission, but, from the point of view of celiac people, there are a lot of characteristics missing in order for it to be the perfect one. So, in order to find its main flaws, we have to know how the detection and the food processing works (link a la part d’application design). This example shows us how the sensor is not completely reliable.
Another thing that made us be sceptical of the specificity of the NIMA was the fact that not all celiac people react to the same epitope of gluten, and for this reason, there are patients that can react to food that doesn’t have gluten in itself but has this concrete epitope, ultimately leading to an autoimmune reaction. Another important improvement for the stakeholders would be the price reduction of our sensor compared to NIMA’s. The NIMA device itself costs $279, and each one-time use capsule is about $5.
That's not an option that everyone can afford. For this reason, we decided to use a cheaper technology to reduce manufacturing costs and create a product that everyone could afford.
All these observations lead us to think about a personalized sensor in order to increase the specificity of the detection and, at the same time, contribute to more reliable results for patients.
Dr. Salvador Borrós – GEMAT (IQS)
Thanks to Dr. Salvador Borrós, from materials engineering group (GEMAT) in IQS, we started to have some ideas on how the sensor could work. At the beginning we had three main ideas, all of these based on gold nanoparticles (AuNPs). We decided to use this technique due to the fact that the vibrant colours produced by their interaction with visible light are strongly dictated by the shape or size of the nanoparticles. The usage of gold nanoparticles also greatly reduces price of the final product compared to antibody-based sensors.
“Success is not final, failure is not fatal: it is the courage to continue that counts.” – Winston Churchill
AuNPs have unique anisotropic geometry which enables them to possess tuneable absorption in both visible and near infrared regions, which makes them suitable for applications in the field of biosensing. Another important thing regarding this technique is that they have a high surface area, which is readily available for modification with targeting molecules. Also, because of our strict commitment to the safety of patients, we decided to use these particles since they are non-cytotoxic.
Bioethics - face to face
“Try not to become a man of success but rather to become a man of value.” – Albert Einstein
For sure, not only the opinion of celiac patients was important to ensure that our sensor would be the perfect one for the celiac population; we also needed a piece of advice from people who can integrate Biology and Ethics. These interviews to some Bioethics professors let us understand if the project that we wanted to develop, apart from being incredibly useful for people with the disease, could also be considered ethical. We decided to do this interview because some people don’t approve the fact that for some personalized medicine devices a sample of DNA from the patient is needed for the extraction of a specific molecule.
Interviewed Expert: ANNA QUINTANAS FEIXAS
“What I cannot create, I do no understand” – Richard Feynman; American theoretical physicist
- Doctor in Philosophy and specialist in bioethics.
- Professor of the Department of Philosophy of the University of Girona (UdG).
- Director of the Observatory of Applied Ethics for Social, Sociosanitary and Psychoeducational Intervention.
- Vocal member of the Health Ethics Committee of the University Hospital Dr. Josep Trueta of Girona.
- Vocal member of the Clinical Research Ethics Committee of the University Hospital Dr. Josep Trueta of Girona.
- Vocal member of the Committee of Ethics and Biosecurity of the Research of the University of Girona.
- The assessment that I am able to carry out on this subject is from the point of view of bioethics.
Nowadays, celiac people still have serious difficulties when following a gluten-free diet due to the obstacles they face when going shopping; prices are much higher, there is a lack of information almost everywhere you go as well as a lot of social ignorance about the issue. For these and other reasons that could be added, scientific research is unquestionably necessary to improve the daily life of celiac people.
Everything seems to indicate that personalized medicine will be key in the near future. Up until now, drugs and other pharmacological products have mostly been used without considering the particularities of each patient. Being able to adapt treatments and interventions to the characteristics of each individual will obviously bring many advantages.
In the case of personalized sensors, they can allow people to have immediate information about the variations that occur in their bodies, which can be very useful and convenient for both them and doctors.
On the other hand, we need to be careful and it is of utmost importance to explain in detail how these sensors should be used. They should be treated as devices that allow patients to become more autonomous and more aware of their condition so they can make decisions about it. However, unwanted effects may also arise, for example, individuals who carry these sensors could be continuously obsessed with the data offered by the device. Rational and measured control of the body and health is positive, excessive concern, on the other hand, becomes unfavorable. Therefore, this new technology should be accompanied by continued support to the users.
Carrying around with us gadgets that inform us about what goes on in the outside world is already a habit for decades. You just have to think about the cell phone. However, with these sensors we are talking about a technique that will constantly give us information about the biological parameters of our body; all those aspects that can have an effect in our health. Will we make a good use of them? We don’t know yet. However, as an example, there are always people who make very good use of their mobile phones and others who don’t.
You will also have to be careful with the handling of the data offered by these sensors. For instance, confidentiality and privacy must always be safeguarded so data is not used against us. When looking for a job, should human resources ask for these sensors to know more about us? Definitely not.
As in any intervention, the four basic principles must be respected and guaranteed. The principle of autonomy: the user should be very well informed about the technique, its objectives, its effects, etc. Only if you have good information you can decide freely. The principles of charity and non-malice: to assess the benefits and risks, considering the preferences of the users themselves. And finally, respect the principle of justice: not to discriminate anybody for reasons regarding the social class, ethnicity, sex, religion, etc. This last principle is important in the case of sensors. Who will benefit from this technique? Will you be able to acquire the device via Social Security or only those with a certain income will benefit from it?
I honestly think that these issues should not be solved only by specialists in bioethics or scientists alone, but should otherwise be open to social debate. These are issues that will guide the direction of our society in the future, so all citizens should be well informed, participate in the debates and be able to contribute to the final decisions. It is not what predominates, of course, but perhaps it is time to democratize science, especially the one funded with public money.