2. 您的學(xué)科興趣方向 Your academic interest direction 生物 ／ 科學(xué) / 醫(yī)學(xué)相關(guān) Biology?。ciences / Medical-related 理工科（非生命科學(xué)） STEM (non-life sciences) 人文社科 / 經(jīng)管 / 藝術(shù) Humanities, social sciences, business, or arts 其他（請(qǐng)注明_______) Other (please specify: _________)
3. 您對(duì)“罕見(jiàn)病”概念的了解程度 How familiar are you with the concept of "rare diseases"? 非常了解（能列舉3種以上，如PKU、高賴氨酸血癥等）Very familiar (can name 3 or more, e.g., PKU, hyperlysinemia) 聽(tīng)說(shuō)過(guò)（知道發(fā)病率低，但不清楚具體危害）Heard of it (know incidence is low, but unclear about specific harms) 完全不了解 Not familiar at all
4. 您是否知曉許多代謝類罕見(jiàn)病患者（如高賴氨酸血癥、苯丙酮尿癥）需嚴(yán)格控制肉、蛋、奶等天然蛋白飲食？Are you aware that many patients with metabolic rare diseases (e.g., hyperlysinemia, PKU) must strictly control natural protein foods such as meat, eggs, and dairy? 知道，且了解這對(duì)生活質(zhì)量的影響Yes, and I understand its impact on quality of life 僅聽(tīng)說(shuō)需要忌口，不了解其嚴(yán)苛程度I have heard about dietary restrictions but do not know how strict they are 不知道，認(rèn)為只是普通忌口No, I thought it was just a simple dietary adjustment 完全不了解Completely unaware
5. 您對(duì)“合成生物學(xué)（通過(guò)人工設(shè)計(jì)生物系統(tǒng)解決問(wèn)題）”的看法更接近：Which of the following best describes your view on synthetic biology (solving problems through artificially designed biological systems)? 尖端醫(yī)療的未來(lái)，是解決疑難雜癥的關(guān)鍵The future of advanced medicine, key to solving difficult disease 具有潛在風(fēng)險(xiǎn)的黑箱技術(shù)，需保持警惕A risky black-box technology that requires caution 比較擔(dān)心，認(rèn)為存在未知風(fēng)險(xiǎn)Somewhat worried about unknown risks 不了解，無(wú)法評(píng)價(jià)Unfamiliar, cannot judge
6. 若一種“轉(zhuǎn)基因益生菌”能替代缺失的代謝酶，從而免除患者的禁食痛苦，您的接受度為：If a "genetically modified probiotic" could replace the missing metabolic enzyme and
free patients from dietary restrictions, what is your level of acceptance?
完全接受，支持臨床應(yīng)用 Fully accept, support clinical application 有條件接受（需經(jīng)過(guò)長(zhǎng)期安全性驗(yàn)證） Conditionally accept (requires long-term safety validation) 心理排斥，擔(dān)心腸道菌群失調(diào) Psychologically resistant, concerned about gut flora imbalance 堅(jiān)決反對(duì)，不接受活體轉(zhuǎn)基因生物入體 Strongly oppose, do not accept live GMOs entering the human body
7. 對(duì)于“將經(jīng)過(guò)安全改造的益生菌以口服方式用于疾病治療”這一做法，您目前的接受度是：What is your current level of acceptance regarding the use of "safely engineered probiotics orally administered for disease treatment"? 完全接受，支持盡快臨床應(yīng)用 Fully accept, support clinical application as soon as possible 有條件接受，但需要經(jīng)過(guò)充分的安全性驗(yàn)證（如動(dòng)物實(shí)驗(yàn)、小規(guī)模臨床試驗(yàn)）Conditionally accept, but require sufficient safety validation (e.g., animal studies, small-scale clinical trials) 心理上有些排斥，擔(dān)心腸道菌群失調(diào)或長(zhǎng)期風(fēng)險(xiǎn)Somewhat resistant, concerned about gut flora imbalance or long-term risks 堅(jiān)決反對(duì)，不接受任何活的轉(zhuǎn)基因生物進(jìn)入人體Strongly oppose, do not accept any live GMOs entering the human body
8. 核心變量測(cè)試：如果該技術(shù)是治療“不可逆神經(jīng)損傷（如智力殘疾、腦萎縮）”的唯一手段，您對(duì)此的態(tài)度是否會(huì)軟化？If this technology were the only treatment for irreversible neurological damage (e.g., intellectual disability, brain atrophy), would your attitude change? 會(huì)，治療收益遠(yuǎn)大于潛在風(fēng)險(xiǎn)Yes, the therapeutic benefit far outweighs the potential risks 依然動(dòng)搖，需視具體的安全性指標(biāo)而定Still hesitant, depends on specific safety indicators 不會(huì)，倫理底線不因疾病嚴(yán)重程度改變No, my ethical principles do not change based on disease severity
9. 安全性機(jī)制評(píng)估：我們?cè)O(shè)計(jì)的“自殺開(kāi)關(guān)（Suicide Switch）”可確保菌株離開(kāi)人體即死亡，這是否能消除您對(duì)“生物污染/基因泄露”的擔(dān)憂？Safety mechanism assessment: We have designed a "suicide switch" that ensures the engineered bacteria die once they leave the human body. Does this alleviate your concerns about "biological contamination/gene leakage"? 能顯著消除我的擔(dān)憂，認(rèn)為這是閉環(huán)的安全設(shè)計(jì)Significantly alleviates my concerns, this is a closed-loop safety design 依然擔(dān)心，不確定開(kāi)關(guān)是否會(huì)失效Still concerned, unsure if the switch might fail 無(wú)所謂，主要擔(dān)憂在于細(xì)菌在體內(nèi)時(shí)的影響Indifferent, my main concern is the effect of bacteria while inside the body 完全不擔(dān)心，我本來(lái)就不擔(dān)心這個(gè)問(wèn)題Not concerned at all — I was never worried about this issue
10. 您認(rèn)為這種“工程化益生菌”在上市時(shí)應(yīng)被定義為：How do you think this "engineered probiotic" should be regulated upon market approval? 嚴(yán)格處方藥： 必須在三甲醫(yī)院醫(yī)生指導(dǎo)下使用，監(jiān)管最嚴(yán)。Strict prescription drug: must be used under the guidance of doctors in tertiary hospitals, strictest regulation 特殊醫(yī)學(xué)用途配方食品（特醫(yī)食品）： 醫(yī)生指導(dǎo)下在藥店購(gòu)買，兼顧安全與便捷 （可在藥店或醫(yī)院藥房憑處方購(gòu)買）。Medical food: available in pharmacies with a prescription, balancing safety and convenience 功能性保健品： 大眾可自由購(gòu)買，追求最大的可及性。Functional health supplement: freely available to the public, maximizing accessibility
11. 罕見(jiàn)病藥物因研發(fā)成本高、患者人數(shù)少，價(jià)格往往極其昂貴。您認(rèn)為制藥企業(yè)在罕見(jiàn)病藥物上獲得較高利潤(rùn)是否合理？Rare disease drugs are often extremely expensive due to high R&D costs and small patient populations. Do you think it is reasonable for pharmaceutical companies to earn high profits from rare disease drugs? 合理，高利潤(rùn)才能激勵(lì)企業(yè)研發(fā)更多孤兒藥Reasonable, high profits incentivize more orphan drug development 部分合理，但應(yīng)設(shè)置利潤(rùn)上限（如不超過(guò)成本的30%）Partially reasonable, but should have a profit cap (e.g., no more than 30% of cost) 不合理，罕見(jiàn)病藥物應(yīng)以成本價(jià)或微利銷售Unreasonable, rare disease drugs should be sold at cost or with minimal profit 應(yīng)由政府或公益組織承擔(dān)研發(fā)費(fèi)用，藥品免費(fèi)或低價(jià)提供給患者R＆D costs should be covered by governments or non-profits, with drugs provided free or at low cost 不了解，無(wú)法判斷 Unfamiliar, cannot judge
12. 對(duì)于這類研發(fā)成本極高的罕見(jiàn)病藥物，您認(rèn)為合理的支付模式是：What do you think is a reasonable payment model for such high-R&D-cost rare disease drugs? 納入國(guó)家醫(yī)保，由全體納稅人共擔(dān)Covered by national health insurance, shared by all taxpayers 由慈善基金會(huì)和社會(huì)捐贈(zèng)覆蓋Covered by charitable foundations and social donations 患病家庭自費(fèi)，但政府應(yīng)限制企業(yè)最高利潤(rùn)率Paid by patient families, but the government should cap profit margins 由商業(yè)保險(xiǎn)覆蓋，個(gè)人自愿投保Covered by commercial insurance, with voluntary individual enrollment
13. 如果這類工程益生菌通過(guò)了國(guó)家藥監(jiān)局的審批上市，您是否會(huì)因?yàn)椤罢呀?jīng)批準(zhǔn)”而放心使用？If this engineered probiotic is approved for market by the national drug regulatory agency, would you feel reassured to use it simply because it is "government-approved"? 會(huì)完全放心，相信監(jiān)管機(jī)構(gòu)的專業(yè)判斷Completely reassured, trust the professional judgment of regulators 會(huì)比較放心，但希望看到更多長(zhǎng)期數(shù)據(jù)Somewhat reassured, but would like to see more long-term data 不太放心，擔(dān)心審批標(biāo)準(zhǔn)不夠嚴(yán)格或存在利益輸送Not very reassured, concerned about lax approval standards or conflicts of interest 完全不放心，只相信獨(dú)立的第三方評(píng)估Not reassured at all, only trust independent third-party evaluations 不確定，視具體情況而定Unsure, depends on the specific circumstances
14. 對(duì)于“用轉(zhuǎn)基因益生菌治療罕見(jiàn)代謝病”這一方向，您最擔(dān)心的問(wèn)題或最重要的建議是什么？What is your biggest concern or most important suggestion regarding the use of "genetically modified probiotics to treat rare metabolic diseases"?