Human Practices

Questionnaires analysis and feedbacks

Feedbacks

How does society influence the direction of your project?

We were initially aware of the problem when we heard many complaints from people around us who are lactose intolerant that "it is difficult to buy lactose-free dairy products in supermarkets". At the same time, some of the researchers in our team were also lactose intolerant and shared with us the common problems they encountered, such as the low level of awareness of lactose intolerance, which made it easy to be misunderstood and even discriminated against in the workplace and in social situations because of their diet. In response to the current situation of this group, we realized that it is valuable, meaningful and important to help them alleviate their symptoms with the knowledge we are good at. This is one of the reasons why our team was established in the first place.

Before that, we distributed a questionnaire to find out how many people are suffering from lactose intolerance, what difficulties they are experiencing and how the public is aware of it. It was concluded that “About 70% of people suffer from lactose intolerance themselves or others around them, and they suffer from various social inconveniences and emotional tangles as well. At the same time, their expectation of probiotics for lactose intolerance became the idea of our project preliminarily.”

Once established, we set out to investigate the available treatments for lactose intolerance. According to existing research, the main methods to alleviate lactose intolerance are mostly "Limit dairy products" and "Maintain good nutrition", but there is no cure for lactose intolerance. Therefore, according to our ability, we decided to further investigate the fundamental treatment of lactose intolerance by synthetic biology: the treatment of lactose intolerance with intestinal probiotics (E.coli Nissle 1917, EcN).

How does your project affect society? How does this feedback enter into the process of your work all through the iGEM competition?

When we distributed the questionnaire, we asked respondents the question, "What specifically do you expect from our program?" Many of these answers went something like this, "We would like to return to a normal diet, and in the absence of a cure that can treat the root cause of lactose intolerance, we are more eager for relief to be a little more effective and not just to reduce the diet of foods containing lactose. "After going through these answers, we realized the meaningfulness of these subjective responses. We then asked, on a small scale, whether the previously mentioned responses were generally meaningful, targeting a number of respondents who had voluntarily disclosed to us that they were lactose intolerant. They made it clear that they had high expectations for the products made by our project and would follow our project all the way through, and we did invite them to participate in our milestones step by step, encouraging them to speak about their perspectives on the continuation of our project.

Then, in our interviews with Meilu and Guangming, two major dairy manufacturers selling lactose-free beverages in our region. We asked their directors what they thought of our project, and their assessment was that it was "innovative and of great significance and value to society. They admitted that they had indeed been working on lactose-free drinks for ten years, but they had never worked with a group of aspiring high school students who were willing to make a difference in the lives of lactose-intolerant people, like us. So the idea of our research among local high school students is very innovative, and our project will also go some way to changing the depth of research among local high school students and promoting the spread of synthetic biology.

We also interviewed several professors and gastroenterologists at the beginning of the project, and they all expressed their expectations before we started. And, we kept in touch with them throughout the project in order to continue to receive professional guidance, presenting our milestones to them every month or two. They basically expressed their affirmation, and the few comments they made were repeatedly revised in the project until we were satisfied with the professor and the doctor. And, they made a promise to us that they would promote our results on the university campus and in the workplace after our project was completed.

How might ethical considerations and stakeholder input guide your project purpose and design and the experiments you conduct in the lab?

When we distributed the questionnaire, we explained in the preamble that our questionnaire was completely anonymous and that we would strictly protect the privacy of the respondents' answers from disclosure. When we further investigated the prevalence of the expectation, we only interviewed those who told us they were lactose intolerant (not from the anonymous questionnaire).

The lactose intolerant and stakeholder groups were partly responsible for providing us with ideas and setting our goals for the project, and again, this detail was taken into account in the design of the questionnaire to protect their privacy. Also, throughout the project, we regularly presented the results to them, receiving their input to improve the experiment, and the details.

INTERVIEWS

Guangming Dairy:

We had an interview with Wang Jianming, a senior manager of Bright Diary company’s quality department, which oversees the production of non-lactose milk.

According to Mr. Wang, Asians have a much higher chance of being lactose intolerant for evolutionary causes – historically, we relied much more on agriculture and didn’t usually consume dairy. Europeans, however, were historically nomadic and drank milk much more frequently. Consequently, Europeans’ genome contains a mutation that gives adult ability to continue secrete lactase.

However, Mr. Wang expressed that high lactose intolerance does not seem to stop Asians from consume dietary products. Following the development of cold-chain and pasteurization technologies, Asian countries’ dietary consumption steadily rises — the high protein, calcium, vitamin content inside the milk and its relative low price makes it very desirable to consumers. As more and more Asian adults discover their inability to produce lactase, the demand for non-lactose milk or even a cure for lactose intolerance will definitely rise. For the same reason, Guangming’s market department is investing into lactose-free milk.

Mr. Wang also described the process of producing non-lactose milk product. By adding lactase enzymes into batches of milk, lactose is broken down into glucose and galactose, both digestible by the human body. Unfortunately, since the lactase can’t be recycled, factories have to buy expensive enzymes continuously. This causes non-lactose milk to be very expensive.

To wrap up, Wang added that even though the symptoms of lactose intolerance maybe be alleviated by constantly consuming diary product, the status quo that many Asians are lactose intolerant can hardly change. Moreover, this process of adapting to ingesting lactose can be slow and extremely painful, and ingestion of antibiotics may have disastrous effect on the already adapted microbiome, which means new adaptation process is needed. Therefore, an inexpensive and convenient method to help people digest dairy products has great potentials in the Asian market.

Through this valuable discussion, we were gradually able to form a team value – we wanted to help the majority of Asians who are lactose intolerant to get cheap access to milk, and we want our bacteria to produce lactase for a prolonged amount of time. As a great source of nutrition, milk is essential in tackling world hunger and malnutrition and fights some of the most prevailing chronic diseases like osteoporosis. Our solution, we believe, will encourage the consumption of dairy products and promote physical wellbeing—especially in Asia and Africa, where lactose intolerance is a major obstacle.

Zhongshan Hospital

We had an interview with Ruyi Xue, the associate chief physician of gastroenterology department in Zhongshan Hospital.

We first discussed the possibility to put our research product, a bacteria strand that can break down lactose after implanting itself into the human intestines, into clinical suage. Dr. Xue expressed that clinical trials will be required, and that would take into account of ethical issues such as animal and human testing. We realized that the process of producing a new medicine is much more complicated than we imagined – we inevitably need to discuss the issue of animal and human ethics. This later led to us deciding on E. Coli Nissle 1917 to be our chassis – the safest option in the synthetic biology circuit used for intestinal treatment.

During the discussion, we also talked about public awareness of lactose intolerance in China. Dr. Xue said, unlike Europe and America, not many people in Asia are aware of the lactose intolerance pandemic. This means that it’s perhaps also within our obligation to raise awareness on the issue of lactose intolerance before we work on the product.

Lastly, we asked Dr. Xue how a doctor would diagnose lactose intolerant, as it’s very difficult to distinguish from malabsorption. Dr. Xue listed several factors that need to be considered in a proper diagnosis. First, lactose intolerance may result in clinical reactions such as abdominal pain, bloating and diarrhea, usually appearing two hours after consuming dairy products. In addition, it can also be determined by more precise methods such as stool and blood testing. Hearing about the painful symptoms of lactose intolerance, this strengthened our determination to produce an effective cure.

This interview certainly made us much more informed about the clinical nature of lactose intolerance. But more importantly, it complicated our team value and made it much more nuanced. We were not only more committed in creating a product helpful for the millions of lactose intolerant patients, but also made aware of the safety procedures we need to go through if we are to commercialize our product.

Meilu Dairy

The subject of this interview is the director of Meilu Dairy, a company that focuses on the research and development of infant milk powder, and Meilu mainly develops formula for special medical use. Among their consumers, the elderly are the ones who know the most about lactose intolerance, while young mothers know very little. Therefore, part of their corporate focus is still on mothers' awareness of lactose intolerance, working to make them more aware of the disease and using reasonable means to make them aware of the importance of lactose-free milk at the same time, so as to carry out their commercial promotion. For example, through consultations with infants and toddlers, the nutrition clinical dietitians recommend their lactose-free milk, etc.

In response to our question about whether other sugars are added, the director replied that they add some maltodextrin in moderation. But they do not add sugar or sweeteners like white granulated sugar, also to prevent other diseases such as oral diseases.

The characteristics of their products are as much as possible to restore the state of breast milk, such as the protein, vitamins and minerals contained, but also to promote the absorption of children. And once the infant's intestinal environment is improved, they still recommend continuing to drink breast milk or milk containing lactose to ensure the absorption of sugar.

The impact of their product on lactose intolerant patients is significant, as demonstrated by its lack of need to “promote sales commercially because we they mainly just introduce true functionalities to hospitals and show how effective the formula is (such as lactose free infant formula)”. Furthermore, the director pointed out that as consumer awareness has improved drastically, there is no use for commercial promotion of medical products anymore. We think the same could apply for our product — rising consumer awareness benefits our project from a commercial perspective.

In regard to our question on the exact method of the brand’s product to prevent patients’ inability to digest lactose, the director explained that though it is safe to add lactase into the elderly’s food as nourishment or supplements, there are strict regulations on the existence of lactase in baby formulas and food. As the brand mainly targets infants and children, they do not add any lactase in their products.

As for our question on whether there are different methods for patients to solve their lactose intolerance, the director specifically mentioned that there are three types of patients, which, each requires a different process. For the first type of patients who are born with lactose intolerance, they have to first use the product for a period of time, then switch back to normal baby formula bit by bit, building up immunity until their lactose intolerance is cured. As for the second type of patients, who are prematurely delivered babies with undeveloped intestinal and stomach functions, the product is only needed before the full growth of their intestinal and stomach functionalities. For the last type of patients, who are infected with viruses that cause lactose intolerance, this product is also only needed before they fully restore their intestinal and stomach functionalities.

After hearing the explanation of our experimental methods, Mr. Director pointed out that we should be careful to modify the microorganisms that we produce to enable it to survive in human intestines, because it is vital for microorganisms to survive in acidic environments in order to successfully produce lactase — influx of acidic content (though it would be later neutralized by bile) may be a problem for some bacteria. We thought the use of CAP ensures our bacteria’s survival capabilities in acidic environments, and ensures that acidic influx may not be a problem.

Overall, the interview was extremely helpful in helping us understand existing market products that have similar effects, as well as giving us insights on potential modifications to include in our own experiment. We became more aware of safety requirements, especially for infants, for whom our product is not fit.