[Ethical considerations in genomic cohort study].
During the last decade, genomic cohort study has been developed in many countries by linking health data and genetic data in stored samples. Genomic cohort study is expected to find key genetic components that contribute to common diseases, thereby promising great advance in genome medicine. While many countries endeavor to build biobank systems, biobank-based genome research has raised important ethical concerns including genetic privacy, confidentiality, discrimination, and informed consent. Informed consent for biobank poses an important question: whether true informed consent is possible in population-based genomic cohort research where the nature of future studies is unforeseeable when consent is obtained. Due to the sensitive character of genetic information, protecting privacy and keeping confidentiality become important topics. To minimize ethical problems and achieve scientific goals to its maximum degree, each country strives to build population-based genomic cohort research project, by organizing public consultation, trying public and expert consensus in research, and providing safeguards to protect privacy and confidentiality.
Choi
Eun Kyung
EK
Department of History of Medicine and Medical Humanities, College of Medicine, Seoul National University, Korea.
Kim
Ock-Joo
OJ
D015331:Cohort Studies; D003219:Confidentiality; D032984:Ethics, Research; D023281:Genomics / Q000941:ethics*; D006801:Humans; D007723:Korea