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Genomics and Infectious Diseases: Expert Perspectives on Public Health Considerations regarding Actionability and
Alexis Walker1, Angie Boyce2, Priya Duggal3
1Hecht-Levi postdoctoral fellow at the Berman Institute of Bioethics at Johns Hopkins University.
Ethics & Human Research
|May 19, 2020
Summary
Human genetics influences infectious disease response, but ethical considerations in genomics research are under-explored. Expert stakeholders differed on returning individual results, highlighting the need for dialogue on these complex issues.
Area of Science:
- Genomics
- Infectious Diseases
- Bioethics
Background:
- Human genetics significantly impacts responses to infectious diseases, influencing susceptibility and transmission.
- Ethical, legal, and social implications (ELSI) of genomics research in infectious diseases are under-examined.
- Unique ethical challenges arise in this interdisciplinary field.
Purpose of the Study:
- To explore the ethical perspectives of expert stakeholders in human genetics and infectious disease research.
- To identify areas of consensus and divergence regarding ethical issues, particularly research privacy and return of results.
Main Methods:
- Pilot study involving expert stakeholders.
- Exploration of perspectives from chairs of institutional review boards, biobank directors, and genomics/infectious disease researchers.
Main Results:
- Stakeholders shared similar views on research privacy during public health emergencies.
- Divergent perspectives emerged regarding the role of public health considerations in returning individual research results to participants.
Conclusions:
- Navigating the ethical complexities of genomics and infectious disease research requires broad dialogue among diverse stakeholders.
- Addressing differing views on data sharing and results return is crucial for responsible research conduct.
Keywords:
Certificate of Confidentialitygenetic privacygenomic researchhuman research ethicsinfectious diseasesreturn of resultsMore Related Videos
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