Informed consent and decision-making

Abstract Researchers planning to disclose secondary genomic findings to research participants should strive to maximize benefits and minimize harms. Informed consent is a critical step in ensuring that these goals are achieved and in demonstrating respect for participants’ rights. Researchers may also want to offer participants options about which secondary genomic findings they receive. Genetic counseling can be a useful adjunct to an informed consent process, although certain study designs will preclude the use of traditional genetic counseling during the informed consent process. This chapter explores the ethical basis of informed consent to receive secondary genomic findings and examines several challenges raised at this stage of the research process.