title: My Identical Twin Sequenced our Genome.
abstract: With rapidly declining costs, whole genome sequencing is becoming feasible for widespread use. Although cost-effectiveness is driving increased use of the technology, comprehensive recommendations on how to handle ethical dilemmas have yet to reach a consensus. In this article, Sam shares her experience of undergoing whole genome sequencing. Despite the deeply private nature of the test, the results do not solely belong to Sam; her identical twin sister, Arielle, shares virtually the same genome and received results without a formal consent process. This article explores their parallel experiences as a way of highlighting the controversial ethics of a private test with familial implications.
authors.affiliation: Department of Genetics, Harvard Medical School, 77 Avenue Louis Pasteur, Boston, MA, 02115, USA. Samanthaschilit@fas.harvard.edu.
authors.forename: Samantha L P
authors.initials: SL
authors.lastname: Schilit
authors.affiliation: Department of Neuroscience, Brown University, 185 Meeting Street, Providence, RI, 02912, USA.
authors.forename: Arielle
authors.initials: A
authors.lastname: Schilit Nitenson
mesh_terms: D000328:Adult; D001483:Base Sequence; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000941:ethics; D015894:Genome, Human; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D009369:Neoplasms / Q000175:diagnosis / Q000235:genetics; D017422:Sequence Analysis, DNA / Q000941:ethics; D014430:Twins, Monozygotic / Q000235:genetics / Q000523:psychology*
keywords: Bioethics; Genetic testing; Identical twins; Informed consent; Privacy; Whole genome sequencing