Research on the Ethical Issues of Obtaining Genome Data in Direct-to-consumer Genetic Testing / 中国医学伦理学

ABSTRACT

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.