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Related Experiment Video

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FISH for Pre-implantation Genetic Diagnosis
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Ethical issues in preconception genetic carrier screening.

Ulrik Kihlbom1

  • 1a Center for Research Ethics and Bioethics , Uppsala University , Uppsala , Sweden.

Upsala Journal of Medical Sciences
|July 9, 2016
PubMed
Summary

Population-based preconception genetic carrier screening (PCS) offers expanded panels for recessive traits to the general population. Ethical considerations regarding justice, autonomy, and public aims require careful evaluation for these novel screening programs.

Keywords:
Ethicsjusticemedicalizationpreconception genetic carrier testingreproductive autonomy

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Area of Science:

  • Genetics
  • Bioethics
  • Public Health

Background:

  • Expanded panel preconception genetic carrier screening (PCS) is emerging in the Netherlands.
  • This screening targets individuals without known genetic risks for recessive diseases.
  • It involves testing for a large number of genetic traits, potentially hundreds.

Purpose of the Study:

  • To explore the ethical implications of population-based PCS programs.
  • To advocate for cautious ethical reflection in the implementation of PCS.
  • To address the discrepancy between stated and actual public aims driving PCS development.

Main Methods:

  • Ethical analysis of preconception genetic carrier screening.
  • Review of ethical principles including justice, autonomy, and consequences.
  • Discussion of public health aims and their ethical justification.

Main Results:

  • PCS introduces novel ethical challenges distinct from traditional genetic testing.
  • Ethical issues related to justice, consequences, and autonomy necessitate careful consideration.
  • Potential misalignment between official and underlying public aims of PCS programs is identified.

Conclusions:

  • Implementation of PCS programs requires cautious ethical deliberation.
  • Transparency regarding all public aims, stated and unstated, is ethically imperative.
  • Ethical frameworks must adapt to the complexities of large-scale preconception genetic screening.