My Identical Twin Sequenced our Genome
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.
KeywordsWhole genome sequencing Identical twins Genetic testing Privacy Informed consent Bioethics
- Ayuso, C., Millan, J. M., Mancheno, M., & Dal-Re, R. (2013). Informed consent for whole-genome sequencing studies in the clinical setting. Proposed recommendations on essential content and process. European Journal of Human Genetics, 21(10), 1054–1059. doi:10.1038/ejhg.2012.297.CrossRefPubMedPubMedCentralGoogle Scholar
- Genetic Information Nondiscrimination Act of 2008, Pub. L. 110-223, 122 Stat. 881, codified as amended in scattered sections of 26, 29, and 42 U.S.C. https://www.gpo.gov/fdsys/pkg/PLAW-110publ233/html/PLAW-110publ233.htm. Accessed date May 6, 2016.
- Jackson, M. (2015). Veritas genetics breaks $1,000 whole genome barrier [press release]Google Scholar
- Jamal, S. M., Yu, J. H., Chong, J. X., Dent, K. M., Conta, J. H., Tabor, H. K., & Bamshad, M. J. (2013). Practices and policies of clinical exome sequencing providers: analysis and implications. American Journal of Medical Genetics. Part A, 161A(5), 935–950. doi:10.1002/ajmg.a.35942.CrossRefPubMedGoogle Scholar
- Morell, R. J., Brewer, C. C., Ge, D., Snieder, H., Zalewski, C. K., King, K. A., Drayna, D., et al. (2007). A twin study of auditory processing indicates that dichotic listening ability is a strongly heritable trait. Human Genetics, 122(1), 103–111. doi:10.1007/s00439-007-0384-5.CrossRefPubMedGoogle Scholar
- Sanderson, S. C., Linderman, M. D., Suckiel, S. A., Diaz, G. A., Zinberg, R. E., Ferryman, K., Wasserstein, M., et al. (2016). Motivations, concerns and preferences of personal genome sequencing research participants: baseline findings from the HealthSeq project. European Journal of Human Genetics, 24(1), 153. doi:10.1038/ejhg.2015.179.CrossRefPubMedGoogle Scholar
- Wolf, S. M., Branum, R., Koenig, B. A., Petersen, G. M., Berry, S. A., Beskow, L. M., Daly, M. B., et al. (2015). Returning a research Participant's genomic results to relatives: analysis and recommendations. The Journal of Law, Medicine & Ethics, 43(3), 440–463. doi:10.1111/jlme.12288.Google Scholar