Public Perception Survey on Inhaled Live Biotherapeutic Products for Cystic Fibrosis
调研导语 | Survey Introduction
您好！我们是 iGEM 的一支参赛团队，致力于用合成生物学技术解决罕见病患者的治疗困境。
囊性纤维化（ CF ）是一种遗传性罕见病，患者肺部易被铜绿假单胞菌感染。这些细菌会形成“生物膜”堡垒，使抗生素无法穿透，导致感染反复发作，肺功能逐年下降。
我们正在研发一种 “智能吸入式活菌制剂”——改造对人体无害的益生菌，为其设计两道“安全锁”：仅在进入肺部深处且遇到致病菌时才启动治疗，分泌酶摧毁生物膜。任务完成后，细菌启动“自毁程序”，防止泄漏到环境中。
为确保该技术在未来的落地符合社会伦理与公众期望，我们发起本次调研。您的每一个观点，都将直接影响我们的实验设计与伦理决策。感谢您对生命科学进步的贡献！
Hello! We are an iGEM team dedicated to applying synthetic biology to address the treatment challenges faced by patients with rare diseases.
Cystic Fibrosis (CF) is a rare genetic disorder. Patients' lungs are vulnerable to Pseudomonas aeruginosa infection. These bacteria build "biofilm" fortresses that block antibiotics, causing recurrent infections and progressive lung decline.
We're developing a "smart inhaled live biotherapeutic" — engineered harmless probiotics with two safety locks: they activate only upon reaching the deep lung AND detecting pathogens, then secrete enzymes to dismantle biofilms. Upon task completion, they self-destruct to prevent environmental release.
To ensure that this technology aligns with social ethics and public expectations, we are conducting this survey. Your perspectives will directly inform our experimental design and ethical decision-making. Thank you for supporting the advancement of life sciences!
一、用户画像 1. 您的年龄段是 | What is your age group? 18岁以下 | Under 18 18-30岁 | 18-30 31-45岁 | 31-45 46-60岁 | 46-60 60岁以上 | Above 60
2. 请问您属于以下哪类人群？ | Which of the following best describes you?
囊性纤维化（CF）患者本人 | CF Patient CF患者的家属/照护者 | Family member of caregiver of a CF patient 生物、科学或医学领域的学生或从业者 | Student or professional in biology, science, or medicine 理工科（非生命科学）的学生或从业者 | Student or professional in STEM (non-life sciences) 人文社科、经管或艺术领域的学生或从业者 | Student or professional in humanities, social sciences, business, or arts 其他（请注明) | Other (please specify)
3. 您本人或直系亲属是否患有慢性呼吸系统疾病（如哮喘、慢阻肺、支气管扩张等）| Do you or any immediate family member have a chronic respiratory disease (e.g., asthma, COPD, bronchiectasis)? 是 | Yes 否 | No 不清楚 | Unsure
二、认知与态度 4. 您是否听说过“囊性纤维化”这种疾病 | Have you ever heard of Cystic Fibrosis (CF)? 非常了解（知道病因、症状和治疗方式） | Very familiar (know the causes, symptoms, and treatments) 大概了解（知道是一种肺部罕见病） | Generally aware (know it is a rare lung disease) 只听说过名字 | Heard the name only 似乎有印象 | Vaguely recall 完全没听说过 | Never heard of it
5. 您是否知道囊性纤维化患者肺部感染的病原菌会形成“生物膜”，导致抗生素无法有效杀灭病菌 | Are you aware that pathogens infecting CF patients' lungs can form "biofilms," which prevent antibiotics from effectively killing the bacteria? 知道，且了解生物膜形成的机制和危害 | Yes, and I understand the mechanisms and risks 知道大概，但不清楚具体原理 | Roughly aware, but unclear about the specifics 只听说过“生物膜”这个词 | Heard the term "biofilm" only 完全不知道 | Not aware at all
6. 您是否听说过“合成生物学”或“基因工程改造细菌”这个概念 | Have you ever heard of "synthetic biology" or "genetically engineered bacteria"? 非常了解（知道基因回路、CRISPR等原理） | Very familiar (know gene circuits, CRISPR, etc.) 了解一些基本概念 | Very familiar (know gene circuits, CRISPR, etc.) 只听说过名字 | Heard the term only 似乎有印象 | Vaguely recall 完全没听说过 | Never heard of it
7. 您对“合成生物学（通过人工设计和改造生物系统来解决医疗、环境等问题）”的看法更接近以下哪一项 | Which of the following best describes your view on synthetic biology? 是尖端医疗的未来，是攻克疑难杂症的关键技术 | The future of advanced medicine and key to solving difficult diseases 是一项有价值的技术，但需要严格的伦理审查和安全监管 | A valuable technology requiring strict ethical review and safety oversight 是具有潜在风险的黑箱技术，应保持高度警惕 | A potentially risky "black-box" technology that warrants great caution 不了解，无法评价 | Unfamiliar, unable to comment
三、技术接受度与风险评估 8. 若一种“吸入式转基因益生菌”能够在感染灶原位降解生物膜、恢复抗生素的杀菌效果，从而减少患者的住院次数，您的接受度是 | If an "inhaled transgenic probiotic" could degrade biofilms at the infection site, restore antibiotic efficacy, and reduce hospitalizations, what is your level of acceptance? 完全接受，支持临床应用 | Fully accept, support clinical application 有条件接受，需经过充分的长期安全性验证 | Conditionally accept, pending sufficient long-term safety data 心理排斥，担心吸入活菌会引发肺部感染或免疫反应 | Psychologically resistant, concerned about lung infections or immune reactions 坚决反对，不接受任何形式的转基因活体生物进入人体 | Strongly oppose, reject any form of transgenic live organisms entering the human body
9. 如果该技术是治疗“肺功能不可逆下降、最终需肺移植”患者的唯一有效手段，您的态度是否会发生变化 | If this technology were the only effective option for patients with irreversible lung function decline ultimately requiring transplantation, would your attitude change? 会，治疗收益远大于潜在风险，应该积极使用 | Yes, the therapeutic benefit far outweighs risks 可能会，需要视具体的安全性和有效性数据而定 | Possibly, depending on specific safety and efficacy data 基本不会，风险和收益需要同等权衡 | Not really, risks and benefits should be equally weighed 完全不会，伦理底线不因疾病严重程度而改变 | Not at all, ethical principles do not change with disease severity
10. 我们设计的“任务完成型自毁程序”可确保工程菌在肺部完成治疗任务后主动裂解消亡。这是否能消除您对“活菌在体内长期存在”和“工程菌逃逸”的担忧 | Our "mission-completion self-destruct program" ensures the engineered bacteria actively lyse and die after completing their therapeutic task in the lungs. Does this alleviate your concerns about "long-term bacterial persistence in the body" and "engineered bacteria escape"? 能显著消除，认为这是闭环的安全设计 | Significantly alleviates, this is a closed-loop safety design 能部分消除，但依然担心自毁程序的可靠性 | Partially alleviates, but still concerned about the reliability of the self-destruct mechanism 基本不能消除，主要担忧在于细菌在人体内的短期影响 | Not really, my main concern is the short-term effects within the body 完全不能消除，无法接受任何形式的活体转基因生物 | Not at all, I cannot accept any form of live transgenic organisms
11. 对于这类研发成本极高的罕见病药物，您认为最合理的支付模式是 | What do you consider the most reasonable payment model for such high-R&D-cost rare disease drugs? 纳入国家医保，由全社会共担费用，保障所有患者可及 | Covered by national health insurance, shared by the whole society 纳入罕见病专项保障基金，结合社会慈善援助 | Covered by rare disease-specific funds combined with charitable assistance 患者自费为主，但政府限制企业最高利润率 | Mainly patient self-pay, with government caps on profit margins 完全由患者家庭自费，但鼓励商业保险覆盖 | Fully patient self-pay, with commercial insurance encouraged
12. 对于“吸入式活菌制剂”这种治疗方式，您最担心的是什么？（请选择最主要的两项） | What are your primary concerns regarding this "inhaled live biotherapeutic" approach? (Please select up to two most important concerns) 活菌在体内无法控制，可能大量繁殖或引发新的感染 | Engineered bacteria may proliferate uncontrollably or cause new infections 基因可能泄漏到环境中，通过水平转移影响其他微生物 | Genes may leak into the environment via horizontal gene transfer 长期使用的未知副作用（如慢性炎症、过敏、致癌风险） | Unknown long-term side effects (e.g., chronic inflammation, allergies, cancer risk) 吸入过程本身不安全（如引发呛咳、支气管痉挛） | The inhalation process itself may be unsafe (e.g., coughing, bronchospasm) 说不清，就是觉得“细菌”或者“活体生物药”很可怕，心理上难以接受 | Hard to explain, I just find the idea of "bacteria" or "live biotherapeutics" psychologically unsettling
13. 如果这类工程益生菌通过了国家药监局的审批上市，您是否会因为“政府已经批准”而放心使用 | If this engineered probiotic received marketing approval from the national drug regulatory agency, would you feel reassured to use it simply because it is "government-approved"?
会完全放心，相信监管机构的专业判断 | Completely reassured, trust the professional judgment of regulators 会比较放心，但希望看到更多长期数据 | Somewhat reassured, but would like to see more long-term data 不太放心，担心审批标准不够严格或存在利益输送 | Not very reassured, concerned about lax approval standards or conflicts of interest 完全不放心，只相信独立的第三方评估| Not reassured at all, only trust independent third-party evaluations 不确定，视具体情况而定 | Unsure, depends on the specific circumstances
14. 您对 “吸入式活菌制剂”这类合成生物学技术或者我们的项目还有什么其他的担忧、建议或期待？
Do you have any other concerns, suggestions, or expectations regarding this type of synthetic biology-based technology or any other thing related to our project ?