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Genetic information: making a just world strange.

Iain Brassington1

  • 1CSEP/iSEI, School of Law, University of Manchester, Manchester, M13 9PL, UK, iain.brassington@manchester.ac.uk.

Theoretical Medicine and Bioethics
|May 20, 2014
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This study explores the ethics of genetic information control, proposing that justice, not absolute access, should govern genome data distribution. It suggests a framework where some individuals may be denied personal genetic insights while others gain access, based on principles of just distribution.

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Area of Science:

  • Bioethics
  • Genomic Medicine
  • Philosophy of Information

Background:

  • The control of personal genetic information presents ethical dilemmas.
  • Previous work highlighted a potential duty to remain ignorant of one's own genome.
  • Existing frameworks lack clear guidance on the just distribution of genomic data.

Purpose of the Study:

  • To propose a resolution for puzzles surrounding genetic information control.
  • To establish a framework for the just distribution of genomic data.
  • To explore scenarios where access to genetic information may be ethically restricted or granted.

Main Methods:

  • Philosophical analysis of ethical principles.
  • Exploration of hypothetical scenarios regarding information entitlement.
  • Development of a justice-based model for genetic data distribution.

Main Results:

  • Genetic information distribution can be evaluated based on justice.
  • A just distribution may involve denying individuals access to their own genomic data.
  • Third parties may have justifiable claims to access another person's genetic information.

Conclusions:

  • A justice-based approach offers a novel way to resolve ethical puzzles in genomic information control.
  • Ethical entitlement to genetic information is not absolute and depends on a just distribution.
  • Scenarios where one person has rights to another's genetic data, while the individual does not, are ethically plausible under a justice framework.