Ethical risk and governance approach of gene information application

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  • 1. School of Criminal Justice, Shanghai University of Political Science and Law, Shanghai 201701, China

    2. School of Law, Shanghai University of Finance and Economics, Shanghai 200433, China

Received date: 2023-12-18

  Revised date: 2024-06-30

  Online published: 2024-12-13

Abstract

The application of personal genetic information in gene technology has some ethical risks such as privacy disclosure,genetic discrimination. The current governance of ethical risks in the application of genetic information lacks attention to theprotection of the rights of future generations, the review mode of ethics committees within institutions is difficult to ensure thefairness of review, the existing anonymization standards are insufficient to shoulder the heavy responsibility of protecting citizens'personal genetic information, anti-genetic discrimination laws and regulations need to be improved, and enhanced gene editingregulations are insufficient. By examining the current institutional status of gene information protection in China, the basicposition of ethical governance of gene information technology is determined, and the optimal path of ethical risk governance ofgene information application is proposed. Specifically, it includes strict ethical review mechanisms for the application of geneticinformation, establishing standards for the rational use of genetic information, improving laws and regulations against geneticdiscrimination, and improving the crime of illegal implantation of gene editing and cloning of embryos.

Cite this article

WU Heqi, SUN Yuanjun . Ethical risk and governance approach of gene information application[J]. Science & Technology Review, 0 : 1 . DOI: 10.3981/j.issn.1000-7857.2023.12.01904

References

[1] 田野 . 消费性基因检测场景下的个人基因信息保护[J].财经法学, 2023(6): 18-32.

[2] Erlich Y, Shor T, Pe'Er I, et al. Identity inference of genomic data using long-range familial searches[J]. Science,2018, 362(6415): 690-694.

[3] 中华人民共和国科学技术部 . 行政处罚决定书 国科罚〔2015〕2号[EB/OL]. (2015-9-7)[2024-5-24]. https://www.most.gov.cn/xxgk/xinxifenlei/fdzdgknr/xzcf/202302/t20230-228_184773.html.

[4] 冯君妍 . 人体生物样本库的伦理问题研究[D]. 武汉: 华中科技大学, 2021.

[5] 邓新建 . 佛山 3考生打响反基因歧视第一案[N]. 法治日报, 2010-02-03(5).

[6] 王赵琛 . 医学情境下基因检测的伦理学探究[D]. 北京:中国医学科学院, 2015.

[7] Bayer R. Beauchamp D E. Public health ethics: theory,policy, and practice[M]. Oxford: Oxford University Press,2007: 455-464.

[8] 污名化[EB/OL]. (2023-3-14)[2024-5-24]. https://baike.baidu.com/item/污名化/6185567.

[9] 徐美轩. 生物大数据下人体基因信息的保护境遇及应对——以生物样本库为切入点[J]. 科学学研究, 2022, 40(6): 975-1084.

[10] 石佳友, 刘忠炫 . 科技伦理治理的法治化路径——以基因编辑技术的规制为例[J]. 学海, 2022(5): 183-193.

[11] 郑二威. 刑法介入基因编辑技术的限度——以《刑法修正案(十一)》[J]. 科学与社会,2023, 13(23): 105-126.

[12] 赵精武. 个人信息匿名化的理论基础与制度建构[J]. 中外法学, 2024, 36(2): 326-345.

[13] 阴建峰, 冷枫 . 非法植入基因编辑、克隆胚胎罪之检视与完善[J]. 扬州大学学报(人文社会科学版), 2021, 25(3): 54-65.

[14] 王鹏飞 . 总体国家安全观背景下基因操作技术的刑法规制[J]. 刑法论丛, 2022(1): 237-260.

[15] 石佳友, 刘忠炫. 基因编辑技术的风险应对: 伦理治理与法律规制[J]. 法治研究, 2023(1): 86-98.

[16] 田亦尧, 李欣冉 . 科技伦理治理机制的法治因应与逻辑转换——由生物技术科技伦理规制问题展开[J]. 科技进步与对策, 2021, 38(2): 121-127.

[17] 谢尧雯, 赵鹏 . 科技伦理治理机制及适度法制化发展[J]. 科技进步与对策, 2021, 11(4): 51-65.

[18] Boddington P. Towards acode of ethics for artificial intelligence[M]. Cham: Springer, 2017: 57.

[19] 何怀宏. 建构一种预防性的伦理与法律:后果控制与动机遏制[J]. 探索与争鸣, 2018(12): 11-12.

[20] 郭晔. 全面依法治国新时代的法治规范调整[J]. 法制与社会发展, 2022, 28(2): 5-27.

[21] 梅春英, 徐学华 . 人类基因增强的伦理治理: 治理什么、谁来治理与如何治理[J]. 自然辩证法研究, 2023,39(11): 140-144.

[22] 刘忠炫 . 基因编辑伦理问题的类型化区分及其法律规制[J]. 中国政法大学学报, 2023(3): 126-139.

[23] 金成华, 袁尹凤 . 浅议我国就业基因歧视的立法规制[J]. 法治论坛, 2022(2): 295-305.

[24] 王康 . 基因正义论——以民法典编纂与基因歧视司法个案为背景[J]. 法学评论, 2019(6): 147-159.

[25] 陈龙. 人类基因编辑技术的伦理风险之维[J]. 自然辩证法通讯, 2021, 43(8): 85-90.

[26] 迈克尔·桑德尔 . 反对完美:科技与人性的正义之战[M]. 黄慧慧, 译. 北京: 中信出版社, 2013: 18-22.

[27] 林世芳, 封泉明 . 人造子宫技术权力的运行逻辑与价值规约[J]. 医学与哲学, 2023, 44(15): 11-15+21.

[28] 郑延谱, 薛赛赛 . 人类基因编辑行为的刑法规制及思考[J]. 法律适用, 2023(7): 78-90.

[29] 在中国科学院第二十次院士大会、中国工程院第十五次院士大会、中国科协第十次全国代表大会上的讲话[N]. 人民日报, 2021-05-29(2).

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