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.
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Acknowledgments
The authors thank Medullan for their generous trainee sponsorship and Ms. Tammy Kammin, Ms. Susan Price, Mr. Adam Nitenson, Ms. Erica Ramos, Dr. Robert Green, and Dr. Robert Morell for their input. This work was supported by the NSF Graduate Research Fellowships DGE1144152 (SLPS) and DGE0228243 (ASN). Any opinion, findings, and conclusions or recommendations expressed in this material are those of the authors and do not necessarily reflect the views of the National Science Foundation.
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Samantha L.P. Schilit and Arielle Schilit Nitenson declare that they have no conflict of interest.
Human Studies and Informed Consent
This article does not contain any studies with human participants performed by any of the authors.
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Schilit, S.L., Schilit Nitenson, A. My Identical Twin Sequenced our Genome. J Genet Counsel 26, 276–278 (2017). https://doi.org/10.1007/s10897-016-0046-7
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DOI: https://doi.org/10.1007/s10897-016-0046-7