Center for Medical Ethics and Health Policy Staff Publications

Language

English

Publication Date

6-1-2026

Journal

Health Affairs Scholar

DOI

10.1093/haschl/qxag138

PMID

42305713

PMCID

PMC13268768

PubMedCentral® Posted Date

6-4-2026

PubMedCentral® Full Text Version

Post-print

Abstract

Introduction: After a patient receives genetic test results that indicate an actionable health condition, cascade genetic screening (CGS) is the process of evaluating the patient's relatives for a potentially elevated genetic risk of disease. The United States primarily relies on patients to communicate with their relatives, resulting in suboptimal rates of risk communication, familial genetic testing uptake, and risk-reducing interventions. There is ongoing debate about whether and how best to inform relatives of a potentially increased genetic risk.

Methods: We conducted a nationally representative survey of US adults to assess attitudes toward informing at-risk relatives, acceptability of system-mediated communication, and preferences for the patient's role in risk communication.

Results: Respondents (n = 2056) overwhelmingly supported informing relatives about their genetic risk across condition types, with minimal disagreement (< 10%) about a relative's right to know this information. Most agreed (>45% agreed; >30% strongly agreed) they would want to decide for themselves whether their results are shared, though many favorably viewed doctor-supported communication. Direct clinician contact was acceptable (37.4%) or totally acceptable (11.5%) with patient permission but rarely acceptable without consent.

Conclusion: Findings indicate strong public support for sharing genetic risk information within families, alongside clear expectations for patient consent, to guide CGS implementation in the United States.

Keywords

Cascade screening, Genetics, Public opinion

Published Open-Access

yes

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