Journal of Genetic Counseling

, Volume 26, Issue 2, pp 276–278 | Cite as

My Identical Twin Sequenced our Genome

  • Samantha L.P. Schilit
  • Arielle Schilit Nitenson
Original Research

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.

Keywords

Whole genome sequencing Identical twins Genetic testing Privacy Informed consent Bioethics 

Notes

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.

Compliance with Ethical Standards

Conflict of Interest

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.

Animal Studies

No animal studies were carried out by the authors for this article.

References

  1. 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
  2. Christensen, K. D., Dukhovny, D., Siebert, U., & Green, R. C. (2015). Assessing the costs and cost-effectiveness of genomic sequencing. Journal of Personalized Medicine, 5(4), 470–486. doi:10.3390/jpm5040470.CrossRefPubMedPubMedCentralGoogle Scholar
  3. Cordero, P., & Ashley, E. A. (2012). Whole-genome sequencing in personalized therapeutics. Clinical Pharmacology and Therapeutics, 91(6), 1001–1009. doi:10.1038/clpt.2012.51.CrossRefPubMedGoogle Scholar
  4. 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.
  5. Godard, B., Hurlimann, T., Letendre, M., Egalite, N., & INHERIT BRCAs (2006). Guidelines for disclosing genetic information to family members: from development to use. Familial Cancer, 5(1), 103–116. doi:10.1007/s10689-005-2581-5.CrossRefPubMedGoogle Scholar
  6. Green, R. C., Rehm, H. L., & Kohane, I. (2013). Clinical Genome Sequencing. In G. S. Ginsburg & H. F. Willard (Eds.), Genomic and personalized medicine (2nd ed., pp. 102–122). London and Waltham: Elsevier/Academic Press.CrossRefGoogle Scholar
  7. Green, R. C., Lautenbach, D., & McGuire, A. L. (2015). GINA, genetic discrimination, and genomic medicine. The New England Journal of Medicine, 372(5), 397–399. doi:10.1056/NEJMp1404776.CrossRefPubMedGoogle Scholar
  8. Hankins, G. V., & Saade, G. R. (2005). Factors influencing twins and zygosity. Paediatric and Perinatal Epidemiology, 19(Suppl 1), 8–9. doi:10.1111/j.1365-3016.2005.00609.x.CrossRefPubMedGoogle Scholar
  9. Jackson, M. (2015). Veritas genetics breaks $1,000 whole genome barrier [press release]Google Scholar
  10. 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
  11. Kircher, M., & Kelso, J. (2010). High-throughput DNA sequencing--concepts and limitations. BioEssays, 32(6), 524–536. doi:10.1002/bies.200900181.CrossRefPubMedGoogle Scholar
  12. McLean, N., Delatycki, M. B., Macciocca, I., & Duncan, R. E. (2013). Ethical dilemmas associated with genetic testing: which are most commonly seen and how are they managed? Genetics in Medicine, 15(5), 345–353. doi:10.1038/gim.2012.138.CrossRefPubMedGoogle Scholar
  13. 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
  14. Platt, J., Cox, R., & Enns, G. M. (2014). Points to consider in the clinical use of NGS panels for mitochondrial disease: an analysis of gene inclusion and consent forms. Journal of Genetic Counseling, 23(4), 594–603. doi:10.1007/s10897-013-9683-2.CrossRefPubMedGoogle Scholar
  15. Roche, M. I., & Berg, J. S. (2015). Incidental findings with genomic testing: implications for genetic counseling practice. Current Genetic Medicine Reports, 3(4), 166–176. doi:10.1007/s40142-015-0075-9.CrossRefPubMedPubMedCentralGoogle Scholar
  16. 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
  17. Sijmons, R. H., Van Langen, I. M., & Sijmons, J. G. (2011). A clinical perspective on ethical issues in genetic testing. Accountability in Research, 18(3), 148–162. doi:10.1080/08989621.2011.575033.CrossRefPubMedGoogle Scholar
  18. 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

Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  • Samantha L.P. Schilit
    • 1
  • Arielle Schilit Nitenson
    • 2
  1. 1.Department of GeneticsHarvard Medical SchoolBostonUSA
  2. 2.Department of NeuroscienceBrown UniversityProvidenceUSA

Personalised recommendations