Genetic research and testing in critical care: surrogates' perspective

Area of Science:

• Genetics and Genomics
• Bioethics
• Critical Care Medicine

Background:

• Genetic testing is becoming integral to critical illness research and clinical care.
• Understanding surrogate decision-makers' (SDMs) views is crucial for implementing genetic technologies in intensive care settings.

Discussion:

• SDMs favored genetic testing for diagnosing treatable diseases over untreatable ones.
• Concerns about potential economic discrimination from employers and insurers were significant barriers.
• Willingness to participate in studies increased with data anonymity.

Key Insights:

• A high participation rate (80.8%) was achieved among eligible SDMs.
• SDMs showed strong support for genetic testing for diagnostic purposes (treatable and chronic diseases).
• Trust in research entities varied, with universities and nonprofits preferred over government or pharmaceutical companies.

Outlook:

• Addressing SDM concerns regarding economic discrimination and data confidentiality is crucial for integrating genetic testing into critical care.
• Building trust in research institutions is essential for advancing genetic research and gene-based technologies in critical care settings.