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Related Experiment Videos

'Principled' personalized medicine?

Bartha Maria Knoppers1, Denise Avard1

  • 1Centre of Genomics and Policy, McGill University and Genome Quebec Innovation Centre, 740 Dr. Penfield Ave, Room 5210, Montreal H3A 1A4, Quebec, Canada. bartha.knoppers@mcgill.ca.

Personalized Medicine
|May 23, 2018
PubMed
Summary

Population genomic studies and personal genetic testing introduce new ethical challenges. Researchers and physicians must adapt to the increasing public accessibility of genetic information, alongside traditional ethical principles.

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Area of Science:

  • Bioethics
  • Genomics
  • Medical Ethics

Background:

  • Population genomic studies and direct-to-consumer genetic testing are increasing.
  • Genetic information is becoming more publicly accessible due to informatics.
  • Traditional ethical principles may be insufficient for current challenges.

Purpose of the Study:

  • To examine the ethical challenges posed by population genomics and direct-to-consumer genetic testing.
  • To assess the readiness of researchers and physicians to handle the ethical implications of accessible genetic data.
  • To evaluate the preparedness of ethics committees for the convergence of research and medical ethics.

Main Methods:

  • Literature review on ethical principles in genomics.
  • Analysis of the impact of informatics on genetic data accessibility.
Keywords:
ethicsgenome sequencingopen accesspersonalized medicinepopulation genomicsprivacy

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  • Discussion of the evolving landscape of research and medical ethics.

    • Main Results:

    • New ethical principles like quality and solidarity are emerging alongside autonomy and privacy.
    • Informatics enhances the accessibility and integration of genetic information.
    • There are significant questions about the capacity of researchers, physicians, and ethics committees to manage these changes.

    Conclusions:

    • The increasing public nature of genetic information necessitates a re-evaluation of ethical frameworks.
    • Researchers, physicians, and ethics committees face challenges in adapting to the open accessibility of genetic data.
    • Existing ethical structures may require augmentation to address the conflation of research and medical ethics.