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Ethical Issues in Genetics and Infectious Diseases Research: An Interdisciplinary Expert Review.

Alexis Walker1, Vence L Bonham2, Angie Boyce1

  • 1Berman Institute of Bioethics, Johns Hopkins University, 1809 Ashland Avenue, Baltimore MD 21205 USA.

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Summary

Genomic research intersecting with infectious diseases (ID) raises unique ethical, legal, and social issues (ELSIs). Balancing public health needs with individual privacy is crucial for equitable genomic data sharing in ID research.

Keywords:
GeneticsInfectious diseasesJusticePrivacyResource allocationReturn of research results

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Area of Science:

  • Genomic Medicine
  • Infectious Diseases
  • Public Health Ethics

Background:

  • Genetics and infectious diseases (ID) research presents complex ethical, legal, and social issues (ELSIs).
  • These issues arise at the intersection of genetic research, public health regulations, and communicable disease control.
  • Research spans pathogen genetics and human genetic influences on ID response.

Purpose of the Study:

  • To identify and systematize the unique ethical, legal, and social issues (ELSIs) at the intersection of genetics and infectious diseases.
  • To analyze the configurations of ELSIs in the context of public health regulations and communicable disease control.
  • To provide an interdisciplinary expert review of these complex issues.

Main Methods:

  • A formal issue-spotting exercise was conducted.
  • Twenty experts from diverse fields including public health, law, genomics, biobanking, genetic epidemiology, ID medicine, and ethics participated.
  • The exercise focused on the collection, storage, and sharing of genetic information related to infectious diseases.

Main Results:

  • Key ELSIs identified include risks in reporting to government authorities, the return of individual research results, and resource allocation.
  • These issues are shaped by the balance between public health imperatives and individual privacy/protection.
  • Specific configurations of ELSIs emerged based on the interplay of genetics and infectious disease control.

Conclusions:

  • The public health implications of genomics and ID research necessitate careful consideration of equity and justice.
  • These ethical, legal, and social issues are particularly pressing in the context of the COVID-19 pandemic.
  • Addressing these ELSIs is vital for responsible innovation in genomic and infectious disease research.