Literature DB >> 27853911

My Identical Twin Sequenced our Genome.

Samantha L P Schilit1, Arielle Schilit Nitenson2.   

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:  Bioethics; Genetic testing; Identical twins; Informed consent; Privacy; Whole genome sequencing

Mesh:

Year:  2016        PMID: 27853911     DOI: 10.1007/s10897-016-0046-7

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  16 in total

Review 1.  High-throughput DNA sequencing--concepts and limitations.

Authors:  Martin Kircher; Janet Kelso
Journal:  Bioessays       Date:  2010-06       Impact factor: 4.345

2.  Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

Authors:  Susan M Wolf; Rebecca Branum; Barbara A Koenig; Gloria M Petersen; Susan A Berry; Laura M Beskow; Mary B Daly; Conrad V Fernandez; Robert C Green; Bonnie S LeRoy; Noralane M Lindor; P Pearl O'Rourke; Carmen Radecki Breitkopf; Mark A Rothstein; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

3.  Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project.

Authors:  Saskia C Sanderson; Michael D Linderman; Sabrina A Suckiel; George A Diaz; Randi E Zinberg; Kadija Ferryman; Melissa Wasserstein; Andrew Kasarskis; Eric E Schadt
Journal:  Eur J Hum Genet       Date:  2015-10-28       Impact factor: 4.246

Review 4.  Factors influencing twins and zygosity.

Authors:  Gary V D Hankins; George R Saade
Journal:  Paediatr Perinat Epidemiol       Date:  2005-01       Impact factor: 3.980

5.  Health law - genetics - Congress restricts use of genetic information by insurers and employers. - Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233, 122 Stat. 881 (to be codified in scattered sections of 26, 29, and 42 U.S.C.).

Authors: 
Journal:  Harv Law Rev       Date:  2009-01

6.  GINA, genetic discrimination, and genomic medicine.

Authors:  Robert C Green; Denise Lautenbach; Amy L McGuire
Journal:  N Engl J Med       Date:  2015-01-29       Impact factor: 91.245

Review 7.  Whole-genome sequencing in personalized therapeutics.

Authors:  P Cordero; E A Ashley
Journal:  Clin Pharmacol Ther       Date:  2012-06       Impact factor: 6.875

8.  Practices and policies of clinical exome sequencing providers: analysis and implications.

Authors:  Seema M Jamal; Joon-Ho Yu; Jessica X Chong; Karin M Dent; Jessie H Conta; Holly K Tabor; Michael J Bamshad
Journal:  Am J Med Genet A       Date:  2013-05       Impact factor: 2.802

Review 9.  Guidelines for disclosing genetic information to family members: from development to use.

Authors:  Béatrice Godard; Thierry Hurlimann; Martin Letendre; Nathalie Egalité
Journal:  Fam Cancer       Date:  2006       Impact factor: 2.375

Review 10.  Incidental Findings with Genomic Testing: Implications for Genetic Counseling Practice.

Authors:  Myra I Roche; Jonathan S Berg
Journal:  Curr Genet Med Rep       Date:  2015-08-25
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