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Ethical Priorities Among Commercial Genomics Professionals : Survey Evidence Highlighting Diversity, Fragmented

Alexis Walker¹

¹Columbia University Vagelos College of Physicians and Surgeons, 30 W 168th St, New York City, 10032, USA. aw3350@cumc.columbia.edu.

Journal of Bioethical Inquiry

|May 18, 2026

Summary

Professionals in the US human genomics industry expressed high concern regarding data privacy and dataset diversity. Disagreements arose concerning race categories and sociogenomics applications.

Keywords:

Genomics Private sector

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Last Updated: May 19, 2026

Biobank for Translational Medicine: Standard Operating Procedures for Optimal Sample Management

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Published on: November 30, 2022

Area of Science:

Genomics
Bioethics
Sociology

Background:

The private sector human genomics industry faces complex ethical, legal, and social issues (ELSI).
Understanding industry professionals' perspectives is crucial for navigating these challenges.
Previous research involved interviews to inform survey development.

Purpose of the Study:

To explore ELSI as perceived by professionals in the U.S. private sector human genomics industry.
To assess industry insiders' views on emerging ethical concerns.
To identify areas of consensus and divergence on key ELSI topics.

Main Methods:

A structured survey of 111 key informants (researchers, executives, policy leads, communications specialists) in the U.S. human genomics industry.
Survey instrument developed based on prior interview phase findings.
Quantitative analysis of concern levels and consensus; qualitative analysis of open-text responses.

Main Results:

High concern and consensus were reported regarding dataset diversity and fragmented privacy regulations.
Significant disagreement exists on the use of race categories and sociogenomic applications.
Concerns were also noted regarding government partnerships with nations implicated in human rights abuses.

Conclusions:

This study provides insights into the perspectives of a challenging-to-reach industry sample.
Findings suggest potential areas for future collaboration, policy development, and critical scholarship.
The human genomics industry grapples with significant ethical considerations requiring ongoing attention.