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REFUTING THE RIGHT NOT TO KNOW.

Benjamin E Berkman1

  • 1Department of Bioethics at the National INST.s of Health, and is the Deputy Director of the Bioethics Core at the National Human Genome Research INST.

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|April 10, 2023
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Summary
This summary is machine-generated.

The right not to know genetic information is debated as genomic medicine advances. This paper argues for a default of returning high-value genetic findings, challenging the strong right not to know.

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Area of Science:

  • Genomic Medicine
  • Bioethics
  • Medical Law

Background:

  • The advent of rapid, low-cost whole genome sequencing presents challenges to traditional medical norms.
  • Historically, genetic testing emphasized a targeted approach, establishing norms like the 'right not to know' genetic information.
  • Evolving professional guidelines have intensified debate on patient autonomy versus physician beneficence in returning genetic results.

Purpose of the Study:

  • To critically examine the legal and ethical basis of the 'right not to know' in the context of genomic medicine.
  • To challenge the prevailing view that the right not to know is an absolute ethical or legal requirement.
  • To advocate for a shift towards a default policy of returning high-value genetic information.

Main Methods:

  • Legal and ethical analysis drawing from law, philosophy, and social science.
  • Examination of the evolution of genetic testing paradigms from targeted to whole genome approaches.
  • Argumentative essay challenging established bioethical norms regarding genetic information disclosure.

Main Results:

  • The traditional 'right not to know' is not as legally or ethically sacrosanct as commonly perceived.
  • A strong right not to know may hinder the potential benefits of genomic medicine.
  • Current norms may not adequately balance patient autonomy with professional beneficence.

Conclusions:

  • Abandoning the notion of a strong right not to know is recommended.
  • A default approach for returning high-value genetic information, without explicit opt-out, is proposed.
  • Balancing individual autonomy and professional beneficence is crucial for advancing genomic medicine.