내 DNA 정보는 내 마음대로 사용해도 되는가

Is One Free to Disseminate One’s Own DNA Information? - Case for Limiting Use of One’s Own Personal Information -

DNA information not only includes key to the person’s traits but is very unique and hereditary. Due to these special characteristics of DNA information, many jurisdictions protect DNA information as sensitive information and prohibit discrimination based on DNA information. But what about the owner of the DNA information? Does he or she enjoy unfettered use of his or her DNA information? Unexpected phenomena brought about by the emergence of the DTC genetic testing industry and genealogy websites - e.g., tracking of the biological father by the child conceived with anonymous sperm donation -give pause to that very question. Maybe even the owner of the DNA information should be subject to certain limitation before disseminating his or her DNA information. A conflict between the owner of DNA information and a relative whose interest may be harmed by the dissemination of the DNA information may be resolved judicially, under the doctrine of “balancing of conflicting private rights”. However, the doctrine only intervenes when a third-party’s right has been or is likely to be infringed upon. It does not provide any general, preemptive guidance on the use of DNA information by the owner. This article takes an analogy from the Civil Code’s “neighboring property owners’ rule”. Just like a property owner’s right to his or her real property is subject to certain limitation when it is necessary to secure the neighboring property’s optimal use, the owner of DNA information should be subject to certain limitation when it is necessary to guarantee the privacy of a “genetic neighbor” – i.e., a family member or relative. Thus, the article proposes that the owner of DNA information should notify blood relatives sharing at least 25% of the DNA, after considering three factors: (a) the DNA information to be shared or disseminated, (b) personal identifier - such as name, address or email - to be shared or disseminated along with the DNA information, and (c) the accessibility of the database into which the DNA information is to be uploaded. Since a lay person will find it difficult to gauge these three factors, the operator of a DNA database should provide guidance for the participants to the database as to whether notification to blood relatives is warranted, based on these three factors.