The NJU iGEM team believes there are two main aspects of “Human Practices”: public outreach to the non-technical community as well as education engagement; and collaboration within the academic and iGEM community. For both sides, we participated in a series of engagement exercises, including consulting with patients and doctors about potential application spaces for our research technology, educational and investigating outreach to the local Nanjing community, and collaborating with fellow iGEM teams to improve their projects and presentations.
filter_dramaQuestionnaire and Propagation online
We believe science is everywhere and it is a part of each person’s everyday life. For most people without science background, synthetic biology and targeting therapy seems to be a very far-off topic. In order to offer better understanding about synthetic biology and the targeting therapy applied in our project, we did a grand scaled questionnaire on social network and then gathered data for a thorough analogy.
Conclusion of normal group questionnaire
Basic situations of the investigation group
● Effective investigation number: 780.
● Age distribution: 18~50 years of age accounted for the dominant.
● Education level: 66.67% for bachelor degree, the survey group basically has the education background of high school or above.
● Family economic conditions: the vast majority of respondents are of well-off level.
The respondents’ understanding of cancer is relatively simple, one-sided and inadequate.
The way of understanding cancer is limited. Most people learn about it from media reports, even though they are uneven in quality.Figure 1. Rumor of Tumors…
● While the respondents generally recognize that if detected early, cancer can be treated and cured in time, the data notes that there are still nearly 15% of respondents identifying cancer as a terminal and incurable disease.
● The majority of respondents still have a fear of malignancy cancer, which is believed to be their nightmare scenario. Notably, among the 780 valid surveys, only 39.1% are aware of that, during the last decade in China, LUNG cancer made the highest mortality rates amid all types of cancers; 30.9% chose liver cancer, which is of the same high degree of malignancy with Lung cancer; the remaining 30% people choose other types of cancer.
This result demonstrates that people in China still hold a superficial and inadequate perception in the cognition of the malignant degree and the death rate of cancer.
The attitude towards cancer treatment and new therapies
● Of the 780 respondents, curative efficacy and side effects were their top priority concern if selecting cancer treatment.
● Under the influence of "Wei Zexi incident" (a malpractice due to deceptive advertising of immune therapy), 40.86% of the respondents worried about the curative effect and side effect of immune therapy as a new therapy for cancer, and 31.04% said they are afraid to be cheated and take advantage of by criminals when try a new therapy. 24.75% said they would believe the latest research achievements, while only 3.34% expressed entrust or even rejection of immune therapy.
● With a brief introduction of the background of molecular targeted drugs (e.g. Iressa), 64.87% of respondents were open to molecular targeting drugs and consider it acceptable, while 18.27% respondents were worried about the high expense, which they may be unable to afford. It should be noted that there are still 16.92% of the objects consider the immunotherapy as immature and are unwilling to take any risk.
Attitude & SuggestionsFigure 2.Figure 3.Figure 4.
Interview with doctor
To better understand the current situation of cancer treatment and further shape our project direction, we interviewed a doctor from Affiliated Hospital of Nanjing University Medical School (also known as ‘Drum-tower Hospital’) for a broad view of therapeutic concern from professional perspective. There are many teams focusing on technical problems on the interaction between targeting drugs and their models, but the acceptance and trust issues from patients are less discussed. In our project, attitudes of patients is correspondingly valued, so we interviewed doctors from Drum-tower Hospital (Its oncology department is the National Key Clinical Specialist) for their opinions on patients’ acceptance and our project. The suggestion would not only be used for the further improvement of our project, but also provide a general concept of the safety issue that must be dealt with when synthetic biology encounters clinical medicine. Their professional experience and advices are valuable if we want to apply synthetic biology to a broader clinical field in the near future.
Doctors’ View on Current Situation
● Early diagnosis is vital for lung cancer patients as only detection and surgery in the early stage can hold the possibility of cure. However, 2/3 of the patients are diagnosed too late and have already lost the chance of being cured. These un-surgery cases can be called as advanced lung cancer.
● Now numerous people blame the cause of lung cancer on environmental problems, but even in a good environment condition, the incidence of lung cancer is equally high. To some extent, it can be said that the leading cause of lung cancer is smoking.
● According to statistics of 2012, incidence of lung cancer has now made top of all cancer incidence in China, especially for male. Obvious correlation can be observed between smoking and lung cancer. And terribly, lung cancer maintains high mortality rate. The five-year survival rate of clinical lung cancer (i.e., the probability of the patients who still alive five years after diagnosis.) is approximately zero.
● Lung cancer patients stand for unbearable and excruciating pressure both physically and psychologically. There are also some severe complications along with lung cancer, resulting in plummeted life quality after the illness. For example, advanced patients may experience struggle when breathing, chest tightness, persistent cough, and that lung cancer can also be transferred to all other parts of the body, such as brain, bones, causing severe pain, intracranial hypertension, weakness and other symptoms.
Current Treating Situation
● There are 3 main treatments for advanced lung cancer: chemotherapy, radiotherapy and targeted therapy.
● Before targeted drug therapy, advanced lung cancer patients have an average survival period that is no more than one year, and that with other means of therapy (e.g. Radiotherapy), the period can be extended for only 2 to 3 months. Chemotherapy certainly lead to a plummet of life quality of patients. Finally, most patients lose confidence and Survival consciousness during their cure.Figure 5. Interview with doctor
Doctors’ view on the 4 treatments
● In the past few decades, molecular targeting drugs visibly elongated the patient's survival periods and improve the disease control. Recently, the so-called "four carriages" of cancer treatment are surgery, chemotherapy, radiotherapy and molecular targeting drugs.
● Among the treatments of lung cancer, surgery is generally practiced on early patients. The early diagnosis rate of lung cancer, however, is relatively limited because all tumors had no specific symptoms at early stage. Therefore, rate of patients who are able to be performed surgery also take a minor part. To make matters worse, cancer generally has a risk of recurrence and metastasis.
The most commonly used two means, radiotherapy and chemotherapy, were developed only after World War II.
Chemotherapy is to use cytotoxic drugs to kill cancer cells, and inhibit the growth of tumor cells. To some extent, chemotherapy is of certain specificity, but it still terribly influences normal cells;
Now there are some drugs for chemotherapy with less side effects.
● In 2004 after the listing of the molecular targeted drugs iressa (also known as Gefitnib), situation has been greatly changed.
Targeting drugs have a lot of advantages:
Firstly, targeted drugs can be taken orally, removing troublesomeness of hospitalization, providing more convenience;
Secondly, the side effects are relatively small;
Thirdly, it concerned with genes associated with the disease, offering efficacy for specific populations.
● Most of our chemotherapy drugs perform by intravenous infusion, so patients need to be hospitalized. Yet lots of molecular targeted drugs are kinase inhibitors of small molecules, which can be made into oral dosage, providing patients with great convenience. Also, compared to radiotherapy and chemotherapy, molecular targeted drugs with more specifically design, cause far less side effects. Life quality during treatment can be greatly improved from the patient's perspective.
● An important significance of molecular targeted drugs is that, in the past, most drugs are searched and then acquired by human from the nature, but the molecular targeted drugs is a re-creation of human with certain purposes, thus a great revolutionary breakthrough.
● The emergence of targeted drugs allow the basic research apply into clinical cases, leading a revolution in the field of oncology.
● Now, for those who can take targeted drugs, that is patients with sensitive mutations, we can practice molecular targeted drugs combined with radiotherapy and chemotherapy at the same time, enabling patients to survive up to three years --- such a survival period is pretty remarkable. (In fact, clinically 2 to 3 months of survival extension could be viewed as miracle.) The emergence of molecular targeted drugs, combined with a reasonable quantity of radiotherapy and chemotherapy, has promoted a huge progress compared to a dozen years ago.
● One or two decades ago, doctors would have thought it irrelevant to his treatment if they heard about a mutation in a patient's genetic site. With the emergence of targeted drugs, the clinical treatment of tumors upswing to a molecular level.Figure 6. In-depth communication with doctor
Analysis of general patients in Tianjin Medical University Cancer Institute & Hospital
● Time period: 2016.10.13-2016.10.14
● Object: patients and their families from Gastrointestinal Cancer Department and Esophageal Cancer Department of Tianjin Cancer Hospital
● Questionnaire amounts: 65 copies of questionnaires were sent out. 62 valid. 3 invalid (patients only half filled out / cannot understand the questions).
● Receptor: Dr. Liu Rui from Department of digestive oncology, Tianjin Cancer Hospital, Recording: Undergraduate Yang Zining and Cai Jiaxin from Nanjing University.Figure 7. Interview with patients in Tianjin Medical University Cancer Institute & Hospital
Analysis of questionnaire content
Which type of cancer treatments do you know?Figure 8.
During your treatment, what kinds of treatment did you receive?Figure 9.
Result of question 1 showed that, chemotherapy, surgery and radiotherapy were the most well-known 3 treatments to patients and their families. Among the three, chemotherapy comprised 88.71%, accounting for the highest number of votes, showing that everyone considers "cancer" and "chemotherapy" closely linked.
It could be learnt from the question 2 that, chemotherapy plays highest application in cancer clinical treatment, accounting for 87.1% of all investigated patients, which made chemotherapy the most well-known one.
Now when it came to new drugs, it surprised us that around 1/4 of the patients already know about molecular targeted drugs and other new drugs, and 14.52% of patients have received new therapy treatment, showing that patients are no longer unfamiliar with targeted therapy and other new treatments now. Also, doctors would rationally suggest the appropriate patients to actively try new therapies including targeted therapy.
We also learned that, there exists many patients who tried target detection but at last not eligible for targeted therapy; For those who apply targeted therapy, only half of them are receiving good effect, while the other patients choose to give up targeted therapy and regress to traditional treatment due to trivial effect or unaffordable medical expenses.
For different treatment methods, which part do you think is more important?Figure 10.
The results of question 3 showed that, regardless of treatment types, patients value the efficacy superior to other factors. Many patients and their families told us that they would still strive for an ideal treatment no matter how expensive it might be, as long as it can guarantee efficiency. ‘Side effects’ accounted for the second, as cancer patients suffered a great trauma both physically and mentally. If side effects can be minimized, patients will received an utmost degree of relief.
Good curative effect and little side effect for the gene mutational patients are consistent with the advantages of our molecular target drugs, which is very practical and meets the real demands of patients. The biggest problem of our targeted drugs, currently, is actually about the price, since they cannot be covered in the medical insurance system and there is no policy support. In this way, for some ordinary wage-earning-class families, the medical expenses would be a big problem for them. The cost of the new therapies can be prohibitive, thus the patients shrink back at the sight of the price.
Molecular targeted drugs of our team have little side effects, can be taken orally, and are of good therapeutic effect for specific gene mutational patients. Would you be willing to try it if it was put into clinical practice?Figure 11.
The reasons would be shown at the next question.
Your main concern with the new drug is …?Figure 12.
Survey results on attitude towards the new drug showed that, only 14.52% holds absolute negative attitude to new drugs, and most of the patients and their families think it as acceptable, although 43.55% said they will make decisions in specific circumstances, and the cost, the curative effect, genetic testing are all the factors that need to be taken into account.
Consistent with the question 5, we could easily find that, with more than half respondents expressing this concern, the largest concern of patients and their families was that new drugs lack longstanding clinical cases. High charge was also one of the main concerns of patients. This showed that there is still much room for improvement and perfection of medical insurance system in China.
Besides, some patients still had doubts about the specific efficacy of new drugs, worrying they cannot receive fine curative effect even after paying high fee. However, 41.94% patients said they were very willing to try, and believed that the new technology should be well developed and progressed to better fight against cancer--even if the price is expensive, it is still worthy to try.
Our findings are compatible with our initial assumptions. In addition, after interviewing with the patients face to face, we also learned more of the current status of clinical cancer treatment and patients' actual thoughts and real needs, enabling us more aware of the importance and urgency of developing new drug therapy, which proved the significance of our topic.
Most of the patients desire to try the new drugs, but the amount of patients who meet genetic testing standards and requirements of targeted therapy are still limited. Therefore it needs the joint effort of various communities to promote the development of therapeutic targeting drugs and enlarge its covering. At the same time, efforts should be made to diminish the cost of molecular targeted therapy as much as possible, becoming affordable for more patients and families and permitting continuation of more lives.
Interview with patients
Ms. Chen (60-year-old) Gastric adenocarcinoma sufferer
Ms. Chen primarily realized her disease due to sudden hemafecia. After a thorough check, she was told that she has got poorly differentiated adenocarcinoma. She had surgery on Dec. 22nd, 2013, removed the 2/3 of the stomach. In May this year, she suffered a plummet of her weight, from more than 140 pounds to less than 90. Her gastric cancer recurred. She ate less, and one examination showed that cancer cells could be found in 13 different pieces of tissues in her.
Ms. Chen’s treatment now mainly depends on chemotherapy, while cooperates with oral drugs simultaneously. Chemotherapy treatment period is 21 days of hospitalization, followed by 3 days infusion (Oxaliplatin) for about 7-8 hours per day. Her medication cycle is to take oral medications (made in Japanese) for 15 continuous days, then withdraw for 1 week, then circulate.
She chose imported drugs for chemotherapy (import drugs are at her own expense, while domestic drugs can be partly covered by medical compensation). Although imported drugs have relatively limited side effects, as it can prevent hair loss, there are still some adverse reactions like nausea and vomiting, and she felt numb hands and feet. Monthly cost is around 8-10k RMB (around 1300$).
She has adapted gene detect to find pathological cause, and she has more in-depth knowledge of molecular targeted drugs. Yet because the examination results showed that her gene type does not match targeting drugs, thus she gave up targeted drug therapy. When told that targeted treatment costs about 30k RMB (around 4500$) per month, she considered it as acceptable and affordable.
Mr. Teng (52-year-old) Pancreatic cancer sufferer
It was in May or Apr., 2016, Mr. Teng went for examination due to abdominal pain. At first, he thought it might be a gastrointestinal disease, but later results showed that it was actually pancreatic cancer. He had side effects like skin rash and hair loss, but his mental state is pretty good.
Mr. Teng has been applying chemotherapy since August this year. His treating cycle was 15 days of infusion followed by 8 days of withdraw, and his treatment costs 15k RMB (around 2200$) each time.
Mr. Teng did not take new treatments such as molecular targeted drugs into account because he thought it may not be practicable, and he emphasized the use of chemotherapy to get his situation under control. However, the patient did have a good understanding of new therapy, and he showed us some of the new cancer treatment that he knew before. For example, he mentioned a ‘cancer cell hunger therapy’ discovered in Zhejiang University, and also interference therapy from Japan. Mr. Teng has fundamental information related new therapy, but his understanding of cancer and therapies still left deviation.
Mr. Zheng (72-year-old) colon cancer sufferer -> liver metastasis sufferer
In Nov. 2014, Mr. Zheng suffered from blood in his stool, and stool was too soft to form normal shapes. Then he went to hospital for colonoscopy. The results showed that there were distinctly 9 polyps in his gut, two of which have red tips. The doctor suggest two treatment options, one of which is to remove these polyps from anus, and the other option is to apply minimally invasive surgery for the removal of polyps. At the same time, metastatic cancer cells were also detected in his liver, forming two lesions of different size.
Now he mainly takes treatment combining chemotherapy and interventional therapy. Chemotherapy has been practiced for more than a year and most commonly, twice in each month. To be more exacted, he goes for 3 days of chemotherapy every 12 days. Previously he used Irinotecan, but recently it started to develop resistance, so he replaced it by Oxaliplatin. In addition, Mr. Teng has been applying interventional treatment for about once a month, but it’s not fixed, depending on his specific circumstances. The drugs enter mainly from the artery to surround the tumor, and block the blood vessel supplying nutrients for cancer cells, commonly known as "starve cancer cells".
Chemotherapy treatment costs 5-6k RMB (around 890$) each time, and interventional treatment charges the same. Medicare reimbursement for cancer patients covers about 50% of the expense, including repayment for about 90% of drugs costs, but this does not include imported drugs or molecular targeted drugs.
Mr. Zheng also had a good knowledge of gene therapy and other new therapies. From the perspective of patient and his family, gene therapy in Japan is currently more advanced and developed, including a relatively well-known therapy called AK therapy. The patient told us that, molecular targeted therapy treatment can cost hundreds of thousands RMB per years. Molecular targeted drug costs as high as 20 thousands RMB (30,000$) per month. Added with fees of chemotherapy and infusion of nutritional supplement, the monthly treatment will be costing at least 30 thousand (4,500$) RMB. Therefore, Mr. Zheng cannot afford the treating charges, although he believes that treatment consisting of chemotherapy controling the disease and targeted drugs is ideal.
At present, the unaffordable price of molecular targeted drugs still block the way towards actual clinical use.
Ms. Meng (30-year-old) Gastric cancer sufferer
Several months ago, Ms. Meng felt stomach pain very occasionally, but she thought it was just a small stomach problem. Until an examination in May 23rd, 2016, Ms. Meng was told that it was gastric cancer. So far she has been treated for nearly half a year.
Now Ms. Meng mainly takes the treatment of chemotherapy combined with medicine taken orally. Her treatment period is 3 days chemical injection every 24 days and her temporary treatment cost is about 20k RMB (3,000$) as she has just started chemotherapy. Ms. Meng quitted her own work, and her husband frequently ask for time off work to take care of her. Currently the treatment cost has became a massive burden for her family. At present, the main side effects of chemotherapy on Ms. Meng is nausea and vomiting, loss of appetite etc..
Since Ms. Meng hasn’t been treated for a long time, she did not know much about the updating treatment method specifically. As for the molecular targeted therapy, she has only heard of it. Ms. Meng decided to follow the doctor's suggestions. If the doctor considers her suitable for molecular targeted therapy, Ms. Meng will be really willing to try the new drug.
Ms. Guo (70-year-old) Rectal cancer sufferer
Ms. Guo has been diagnosed as rectal cancer for 8 years. Her initial symptoms were slender stools along with purulence and abdominal pain. But she thought it was caused by her constipation combined with hemorrhoids. She did not know that it was rectal cancer until she went to the hospital for a colonoscopy.
During the 8 years, Ms. Guo has experienced two surgeries. The first one was taken soon after her diagnosing. At that time, as she was found in the middle stage of the cancer, the doctors performed the surgery to remove the lesion. After the surgery she continued chemotherapy treatment for continuous control, adhering to the check every 3 months. However, in 2011 and 2015, Ms. Guo has experienced 2 recurrence. Now she depends mainly on the treatment combining chemotherapy and radiotherapy. Every 21 or 28 days she goes to the hospital for a session of chemotherapy. After accept chemotherapy, Ms. Guo suffers from side effects like vomiting, hair loss, limbs weakness, etc.
As Ms. Guo’s husband told us, the reimburse they received is more limited, because they came for treatment from another province, which is defined as non-local insurance. Ever since Ms. Guo’s treatment, they have spent more than 200k RMB (30,000$) on medical expenses, which add up to be a very heavy burden for them.
At the same time, Ms. Guo told us that there are a lot of people distributing leaflets and ads around the hospital. Some of these ads might be false, yet desperate patients still try to contact them as if they are clutching at the straws of their lives. Ms. Guo hopes that the government could provide some authoritative medical journals for patients like them, enabling patients to understand the latest researches from the formal channels, and to get a better comprehending of the therapies that suit them.
Long story in short, most of the patient we interviewed showed positive mental conditions, but the economic situation of their families could be uneven. There are not many patients who have relatively well-off condition like Ms. Chen, and more than half of the patients cannot afford molecular target therapy thus rely on the medical insurance reimbursement.
Most of the patients are holding certain expectations for new therapies. However, obviously, aside from efforts to promote the efficacy of new therapies, the cost of drugs needs to be abridged if we expect to apply the updating research to clinical treatment, which may indicate the direction of our future work.
At the same time, we are very moved to see that, Ms. Guo, who was suffering from cancer, still concerned about the promotion of cancer therapy. Indeed, there exists criminals who exaggerate the new therapies with excessive or false propaganda, thus hampered the promotion of new therapies. We should also keep working to support the promotion of tumor therapy and the elimination of false advertising.
filter_dramaEducation and school workshop
Team NJU-China tried to introduce synthetic biology to people through various ways. This year, NJU-China planned to arouse adolescents’ interest towards this new field of science by organizing lectures for high school students. After the discussion, the students were taken on a tour to visit the laboratory. Through these activities, we successfully presented the basic information about iGEM and synthetic biology to the youth.Figure 13. Our instructor is introducing our lab to high school students
On Aug 20th, we held a lecture to the participants of a biology summer camp held by Nanjing University, who were high school students from all over China. The presentation consisted of an introduction of iGEM, synthetic biology and our project. Most students showed strong interests in our project and iGEM. The aim of the lecture was to let students have better understanding of the applications and benefits of synthetic biology. We believe that giving presentation about iGEM to high school students, we, college students as well as iGEMers, can inspire them to think deeper about how synthetic biology can change our lives. After the talk, the students were taken on a tour to visit the laboratory where our experiments were taken.Figure 14. Students are visiting our lab
filter_dramaConference and Communication
Central China iGEM Consortium (CCiC) is a national iGEM communication summit hosted by Chinese universities. It was founded with the aim of idea-sharing, communication and cooperation among iGEM teams, and promoting high-level discussion of advanced issues pertaining to the promotion of international Biosynthesis issues. CCiC schedule simulates that of iGEM Giant Jamboree, with each undergraduate team presenting their project and display posters, seeking out to be an academic conversation and experience sharing conference, while providing an interactive platform for training teams at the same time.
The CCiC was held at Hedanqing Hall of Sun Yat-sen University in Guangzhou, with 28 teams from all over China participated. Our presentation won unanimous praise from the judges and audience, as well as attracted many spectators to interact with us in the Q&A section. Also, while displaying our poster, we had close talks with numerous teams, introducing the project design and progress, and shared our achievements and experience when working on the project.Figure 15. Communication at SYSU-CiCCFigure 16. Our poster at SYSU-CCiCFigure 17. Group photo at SYSU-CCiC
Extensive discussion with other iGEM teams at Zhejiang University.
In July, 2016, our teammates attended an iGEM communication summit organized in Zhejiang University. During the communication, we established deep connection with other universities in China and exchanged our ideas on different projects.Figure 18. Communication at Zhejiang University