直面消费者基因检测中获取基因数据的伦理研究

Research on the Ethical Issues of Obtaining Genome Data in Direct-to-consumer Genetic Testing

随着基因检测技术日渐成熟,测序成本下降,直面消费者基因检测出现依托网络平台的新兴商业模式。通过梳理该类型基因检测的流程和方法,发现获取基因数据是基因检测公司营利不可或缺的一环;通过辨析基因检测公司获取基因数据的实质伦理问题与程序伦理问题,以及知情同意存在的不充分、隐匿性与误导性问题,提出诚信原则、底线原则和最小风险原则,以保护消费者的正当权益,促进直面消费者基因检测的良性发展。

With the maturity of genetic testing technology and the decrease of genetic sequencing cost,an emerging business model based on online platforms has emerged in direct-to-consumer genetic testing.This paper combed the process and methods of this type of genetic testing,and found that obtaining genome data is an indispensable part of the profit making of genetic testing companies.By analyzing the substantive and procedural ethical problems of genetic testing companies’access to genome data,as well as the insufficient,hidden and misleading problems of informed consent,this paper proposed the principle of credibility,bottom line and minimum risk to protect the legitimate rights and interests of consumers and promote the positive development of direct-to-consumer genetic testing.