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Ethical challenges in pathogen sequencing: a systematic scoping review.

Stephanie Johnson1, Michael Parker1

  • 1Wellcome Centre for Ethics and Humanities and Ethox Centre, University of Oxford, Oxford, OX3 7LF, UK.

Wellcome Open Research
|September 1, 2020
PubMed
Summary
This summary is machine-generated.

Genomic surveillance using pathogen sequencing offers transformative public health potential. Addressing ethical challenges, particularly data use and global equity, is crucial for its responsible implementation.

Keywords:
NGSethicsglobal healthinfectious diseasepathogen genomics

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Area of Science:

  • Public Health
  • Genomics
  • Bioethics

Background:

  • Routine implementation of genomic surveillance and outbreak investigation is anticipated.
  • Emerging ethical challenges and gaps in current ethical frameworks require systematic identification and assessment.
  • Addressing practical challenges in genomic surveillance necessitates further ethical considerations.

Purpose of the Study:

  • To systematically identify emerging ethical challenges in pathogen genome sequencing for public health.
  • To assess gaps in ethical frameworks and identify areas for future work.
  • To inform the ethical implementation of genomic surveillance and outbreak investigations.

Main Methods:

  • Systematic literature search of academic databases (PubMed, Google Scholar, Web of Science) from 2000 to April 2019.
  • Included peer-reviewed articles discussing ethical issues in pathogen genome sequencing for diagnostics, surveillance, and outbreak investigation.
  • Synthesized findings into key themes related to ethical considerations.

Main Results:

  • 28 relevant articles were identified, with contributions from various countries.
  • Key themes included public vs. private interests, research-to-practice translation, community trust, equity, global partnerships, and context.
  • Specific focus areas included HIV sequencing and broader disease-agnostic applications.

Conclusions:

  • Pathogen sequencing holds transformative potential for public health, but ethical issues, especially data usage conditions, must be addressed.
  • Ethical standards should incorporate public values and require further empirical investigation into stakeholder perspectives.
  • Future development must prioritize justice and global health equity.