Commentary: “My Identical Twin Sequenced Our Genome”

Excerpt

In this issue of the Journal of Genetic Counseling, Sam and Arielle, monozygotic twin sisters, describe their personal experience with genomic testing. Sam’s interest in genetics and her concern about a family history of cancer compelled her to pursue predisposition whole genome sequencing (WGS) testing. This particular WGS test is designed for individuals who are not seeking a specific genetic diagnosis in the context of a medical evaluation, but who are interested in predispositional genetic health information and other genetic information such as pharmacogenetics and carrier status. Arielle was not interested in having testing and was initially not supportive of Sam’s pursuit. In sharing their story, the authors call attention to the ethical dilemma raised by genetic/genomic test results that may impact both the patient and family members. The authors also highlight other potential concerns associated with this type of WGS testing, such as the accessibility of genetic counselors and genetic data security/privacy. …