# Not all information is equally important: informed consent to genetic testing for hereditary cancer

## TL;DR

This study explores what patients consider most important in informed consent for genetic testing, aiming to improve patient-centered communication and consent forms.

## Contribution

The study identifies patient-prioritized aspects of genetic testing consent, offering insights for revising legally sound, patient-centered forms.

## Key findings

- Consent aspects with clinical benefits for patients and families were rated as more important.
- Participants emphasized the importance of receiving additional test results with clinical consequences.
- Relative differences in importance ratings suggest opportunities to tailor consent forms to patient needs.

## Abstract

Informed consent in medical care is supposed to guarantee patient autonomy. However, in practice, written consent is often inadequate for this purpose: In an effort to meet legal requirements, consent forms are often comprehensive and complex. They cover all information that could potentially be relevant, possibly overwhelming patients rather than addressing their concerns. Thus, there is an urgent need for more patient-centered consent forms. As a first step toward this goal, this study assessed the importance of various aspects of consent to genetic testing from the patients’ perspective.

A cross-sectional online study was conducted with 224 participants at elevated risk for hereditary breast and/or ovarian cancer. Participants rated the importance of 14 aspects typically covered on the consent form. Each aspect was compared with all other aspects using multiple contrast tests for repeated measures. Participants also provided hypothetical consent to each aspect. Voluntary comments to the consent aspects were analyzed using qualitative content analysis.

Although the majority of consent aspects were rated important in absolute terms, we observed relative differences. Specifically, consent aspects reflecting a clinical benefit for the patient and her family were rated as more important relative to all other aspects. This included, for example, consent to receiving additional test results which could imply further clinical consequences.

Our results may inform the communication between patients and their counseling physicians prior to genetic testing. They also provide an empirical basis for revising consent forms to better align with patients’ needs while remaining legally sound.

The online version contains supplementary material available at 10.1007/s00432-026-06422-y.