A modified Delphi study to determine healthcare consumer priorities and consensus for the use of genomics and precision medicine approaches in pregnancy healthcare and research

Background

Pregnancy is a uniquely complex ethical and clinical context in which precision medicine approaches, including genomics-driven risk prediction tools, biomarker-based stratification, and data-intensive analytics, are rapidly evolving. There is a need for community consultation on the ethical, social, and practical implications of precision medicine in pregnancy research and healthcare.

Aim

The primary aim of this study was to engage healthcare consumers to build consensus on the acceptability of precision medicine approaches in pregnancy research and healthcare. We also sought to identify consumer priorities for future research.

Methods

A two-round modified Delphi study was conducted to determine consumer opinions on the use of precision medicine approaches in pregnancy research and healthcare. Seven in-person workshops (round one) were held, with purposeful recruitment to ensure a representative group of healthcare consumers who engage with the healthcare system during pregnancy. These included first-time parents, culturally and linguistically diverse women, Aboriginal and Torres Strait Islander women, and women and their partners who had experienced previous pregnancy complications. Recruitment was conducted through established advocacy networks, and each workshop was facilitated by representatives from each organization. A second-round online survey, based on workshop content, was completed to assess the acceptability of precision medicine and to determine consumer priorities for future precision medicine research on pregnancy health.

Results

Precision medicine research and the implementation of new technologies in clinical care were acceptable to participants; however, the need for transparency and trust between participants and researchers regarding the use and storage of genetic material was highlighted, particularly among Aboriginal and culturally and linguistically diverse participants. Outcomes related to survival and perinatal complications (stillbirth, preterm birth, and labor complications) were the highest-rated consumer research priorities, along with maternal mental health and breastfeeding. When asked whether participants would like to see PM available as part of routine pregnancy care for conditions with available treatments, complete consensus (100%) was reached.

Conclusion

Healthcare consumers strongly support the use of precision medicine in pregnancy research and its translation into routine clinical care, particularly when effective interventions are available. However, implementation must be underpinned by transparency, trust, culturally appropriate governance, and clear communication about the collection, storage, and use of genetic material. These findings provide a consumer-informed framework for prioritizing future precision medicine research and guiding its responsible translation into pregnancy care.

Key Points

Australian healthcare consumers were broadly supportive of precision medicine approaches to pregnancy research and healthcare

Implementation of precision medicine into research and healthcare must be underpinned by robust and transparent governance, clear communication and culturally appropriate guidance.