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DNA sequencing is a fundamental technique that is routinely used in the biological sciences. This method can be applied to a range of questions at different scales - from the sequencing of a cloned DNA fragment or the study of a mutation in a gene up to whole-genome sequencing. However, despite the widespread use of sequencing today, it was not until 1977 that Fredrick Sanger and his collaborators developed the chain-termination method to decode DNA sequences. It relies on the separation of a...
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My Identical Twin Sequenced our Genome.

Samantha L P Schilit1, Arielle Schilit Nitenson2

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|November 18, 2016
PubMed
Summary

Whole genome sequencing offers cost-effective insights but raises ethical questions. Familial implications, like shared results with an identical twin without consent, highlight the need for ethical guidelines in genetic testing.

Keywords:
BioethicsGenetic testingIdentical twinsInformed consentPrivacyWhole genome sequencing

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Area of Science:

  • Genomics
  • Bioethics
  • Personalized Medicine

Background:

  • Declining costs make whole genome sequencing (WGS) increasingly accessible.
  • WGS presents complex ethical challenges, particularly regarding data privacy and consent.
  • Genetic information has implications beyond the individual tested.

Purpose of the Study:

  • To explore the ethical dilemmas arising from whole genome sequencing.
  • To highlight the familial implications of genetic testing through a personal narrative.
  • To examine the consent process for individuals undergoing WGS.

Main Methods:

  • Qualitative analysis of a personal experience with whole genome sequencing.
  • Case study approach focusing on the experiences of identical twins.
  • Exploration of ethical considerations in genetic data sharing.

Main Results:

  • WGS results carry significant implications for genetically related individuals.
  • The absence of a formal consent process for a twin raises ethical concerns.
  • Personal narratives can illuminate complex bioethical issues.

Conclusions:

  • Current ethical frameworks may not adequately address the familial implications of WGS.
  • There is a need for consensus on ethical guidelines for genetic testing and data sharing.
  • Balancing individual privacy with familial genetic information is a critical challenge.