Survey on Fecal Donor's Perception and Attitudes Towards Ethical Issues of Fecal Microbiota Transplantation
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摘要: 2021年8月～9月，通过三家开展肠菌移植的单位进行了电子问卷调查，旨在从捐献者的角度，探究我国文化语境下他们对于捐献肠菌的特殊感受和对相关伦理问题的认知态度。结果显示，多数捐献者（80.0%）出于利他的目的进行捐献；超半数捐献者（53.0%）认识到捐献肠菌的风险；61.0%的捐献者同意自己的样本用于未来开放的研究，且后续研究都无需再次同意；与纯粹的捐献相比，具有经济目的的捐献者更加重视肠菌的所有权（χ2=5.73，P＜0.05）和利益分享（χ2=10.13，P＜0.05）。捐献肠菌会引发污名化、隐私权等道德风险，需要提高研究人员的伦理意识，提升民众对生物科学研究的知情权与参与能力，保护公众和个体的利益不被侵犯。Abstract: From August to September 2021, an electronic questionnaire survey was conducted in Zhongshan Hospital Affiliated to Xiamen University and Chengge Biotechnology Co., LTD. (Xiamen), aiming to explore their special feelings about fecal microbiota donation in the context of Chinese culture and their cognitive attitudes towards relevant ethical issues from the perspective of donors. The results showed that the majority of donors (80.0%) donate for altruistic purposes; more than half donors (53.0%) are aware of the risk in the act of donating; 61.0% of donors agreed with their samples used for future open research, no need to re-consent when research frameworks change. Compared with the donors who did not choose to "gain additional income" as their motivation to donate, the donors who chose to "gain additional income" significantly paid more attention to the ownership of fecal microbiota (χ2=5.73, P＜0.05) and research benefit sharing (χ2=10.13, P＜0.05). Fecal microbiota donation will trigger stigma and moral risks in the protection of privacy right. It is necessary to improve the ethical awareness and practical wisdom of researchers, promote the public's right to know and participate in biological scientific research, and protect the interests of the public and individuals from being infringed.
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Keywords:
- fecal microbiota transplantation /
- super donor /
- ethics /
- risk /
- informed consent /
- stigma /
- ownership
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表 1 捐献者对捐献肠菌的认知
人数 构成比/% 捐献肠菌和捐献血液的区别（n=100） 有区别 60 60.00 无区别 32 32.00 不清楚 8 8.00 捐献肠菌和捐献血液的区别（n=60） 捐献的肠菌用于临床救治时不需要配型 36 60.00 捐献肠菌的筛查程序与捐献血液不同 35 58.33 捐献肠菌不会对身体造成影响，而捐献血液会对身体造成影响 30 50.00 捐献肠菌是收益性的，有经济补偿，而捐献血液是公益性的 16 26.67 捐献肠菌捐的是人体“垃圾”，而捐献血液捐的是人体组织 12 20.00 捐献肠菌有一种羞耻感，而捐献血液没有这种羞耻感 9 15.00 其他 1 1.67 
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表 2 捐献者对捐献肠菌的态度
人数 构成比/% 是否愿意为了持续捐献肠菌而对生活方式（如饮食限制、不能服用抗生素、不能有性生活、不能刺青、日常作息规范等）进行自我约束和管理（n=100） 愿意 87 87 不愿意 13 13 如果没有经济补偿，是否还愿意捐献肠菌（n=100） 愿意 57 57 不愿意 18 18 不确定 25 25
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表 3 捐献者对风险的看法
人数 构成比/% FMT存在的风险（n=100） 生理风险，如多重耐药菌或未知的感染，甚至可能有患癌的风险 79 79.00 心理风险，如移植菌群可能会给一个人的情感、认知、精神和人格方面带来改变 52 52.00 社会风险，如被别人知道在接受FMT治疗，患者可能会面临嘲笑或者羞辱（吃别人的粪便），使患者产生自卑感等 43 43.00 其他 1 1.00 不清楚 8 8.00 捐献肠菌是否存在风险（n=100） 存在某些风险 53 53.00 不存在风险 30 30.00 不清楚 17 17.00 捐献肠菌存在的风险（n=53） 可能会导致粪便的商业化买卖 39 73.58 可能会泄露捐献者的隐私（如通过“微生物指纹”） 33 62.26 可能会遭到别人的嘲笑和歧视 16 30.19 粪便样本检测过程中的意外发现（如检测出患者患有艾滋病或者肠癌）可能会对捐献者产生不利影响 36 67.92
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表 4 捐献者对知情同意的看法
人数 构成比/% 是否希望被告知自己粪便样本的用途（n=100） 是 84 84 否 16 16 是否同意捐献的粪便样本用于未来开放的研究（n=100） 同意，且后续研究都无需征得我的再次同意 61 61 不确定，但后续研究与当初被告知的研究不同时需征得我的再次同意 37 37 不同意 2 2 研究人员在检测粪便样品的过程中经常会发现捐献者的一些健康隐患和风险（如患肠癌的风险），您是否希望被告知此类信息并得到相关健康管理咨询（n=100） 是 99 99 否 1 1
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表 5 捐献者对所有权的看法
人数 构成比/% 肠菌与您的关系是？（n=100） 它是我自身的一部分 67 67 它是环境的一部分，不属于我自身的一部分 8 8 既不属于自身，也不属于环境，和我是特殊的关系 24 24 它是环境的一部分，也是我自身的一部分 1 1 是否拥有肠菌的所有权？（所有权是指所有人依法对自己财产所享有的占有、使用、收益和处分的权利）（n=100） 是 77 77 否 23 23 研究发现，某些捐献者的粪便样本相比于其他捐献者更具有疗效，这些捐献者被称为“超级供体”，假设研究人员发现您属于“超级供体”，您认为您是否有权利因自己肠菌的特殊功能或价值而分享研究所带来的利益？（n=100） 是 83 83 否 17 17
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