Ethical Issues: Overview in Genomic Analysis and Clinical Context

This chapter discusses ethical, legal, and social issues (ELSI) centered around hereditary breast and ovarian cancer syndrome (HBOC). In the first half, we discuss ethical considerations in the context of decision-making on genetic testing, debates on incidental/secondary findings (IFs/SFs), and global trends in clinical and/or genetic data sharing, including with patients and their family members. In the second half, from the perspective of clinical ethics of cancer diagnosis and treatment, we introduce the importance of decision-making and care based on the shared decision-making (SDM) approach and practical points in prophylactic surgery. We also discuss dilemmas that arise regarding confidentiality between medical professionals and their patients. This includes disclosure of genetic information with genetic relatives, and challenges in family communication, in which carefully assessed and encouraging support may be needed for patients and family members.