Korea proposes letting teens decide on genetic testing

Beginning as early as next year, teenagers in Korea aged 14 and older may be required to provide their own consent — in addition to parental approval — to undergo direct-to-consumer (DTC) genetic testing offered by nonmedical institutions.

DTC kits, which are sold without a prescription or involvement from medical professionals, offer genetic insights such as an individual’s risk for certain diseases.

According to a recent report by the Ministry of Health and Welfare, the government is pushing to introduce new guidelines aimed at preventing the misuse of genetic information and respecting minors’ right to self-determination.

The proposed guidelines clarify the minimum age at which minors can manage their own genetic data and introduce a dual-consent requirement for DTC genetic testing involving adolescents.

Experts recommend setting the age threshold at 14, in line with the Personal Information Protection Act, which designates the minimum age for consenting to the use of personal data.

Under the proposed guidelines, both minors and their legal guardians would need to provide consent before testing — a departure from earlier DTC pilot programs that accepted only guardian approval. The change is intended to bolster minors’ autonomy and right to self-determination, with the health ministry report emphasizing that the will of the minor, as the subject of the genetic information, must take precedence.

The measure seeks to curb misconceptions that genetic traits determine one’s destiny and to minimize the risk of psychological harm or peer discrimination stemming from test results. The report urges the government to establish a separate committee to review and approve DTC testing categories for minors.

The study comes amid growing concerns over regulatory blind spots. While Korea’s DTC genetic testing market has expanded slowly due to ambiguous rules, some consumers have begun turning to overseas services — highlighting the need for stronger oversight.

Test categories will be limited to those considered beneficial to minors. An expert committee gave favorable reviews to categories such as obesity, blood pressure, blood sugar and cholesterol — all of which can be managed through lifestyle modifications.

Appearance-related traits, such as hair loss or skin color, as well as markers for nicotine or alcohol metabolism, will be excluded on the grounds that they are either unnecessary for minors or likely to provoke mere curiosity, in the case of the latter.

According to the Ministry of Health and Welfare, the global DTC genetic testing market was valued at $1.4 billion in 2021 and is projected to reach $3.32 billion by 2028. In contrast, Korea’s market remains relatively small, estimated at around 30 billion won ($21 million) as of 2022.

Current regulations require companies to submit academic research involving minors to obtain approval for tests aimed at underage users. However, the scarcity of such studies has created significant practical barriers for market entry.

The Ministry of Health and Welfare said Monday it is collecting feedback from experts and genetic testing institutions on the report’s recommendations, adding that no final revisions to the guidelines have been made.