Marketing and publicity strategies for launching the pilot phase of the Hong Kong Genome Project

Abstract

Aim: Public trust and confidence determine the acceptance of any population-based genome project. The Hong Kong Genome Institute (HKGI) was established in May 2020 by the Food and Health Bureau (Currently the Health Bureau) to spearhead the integration of genomic medicine into mainstream healthcare. One of HKGI’s goals is to enhance public genomic literacy and engagement by launching the Hong Kong Genome Project (HKGP).

Methods: Three focus groups (undiagnosed and rare disease patients and their families, hereditary cancer patients and their families, and clinical geneticists and other medical subspecialists) involving 20 patients, family members, and healthcare professionals were completed in mid-2021 by an independent party. The aim was to harness insights into stakeholders’ views, concerns, and aspirations on issues related to genomic studies and the HKGP: (1) the decision to undergo genetic testing; (2) concerns; (3) campaign format; and (4) other strategic suggestions for the Pilot Phase. These issues are complex and multifactorial and have not been documented in Chinese populations. The qualitative approach facilitates such exploration.

Results: Four themes emerged from the thematic analysis: (1) decisional considerations of undertaking genetic testing: perceived benefits and motivators; (2) concerns and worries: personal, familial, and societal concerns; (3) a quest for a patient-oriented, transparent, and decommercialized whole-genome sequencing campaign; and (4) communicating genomics efficaciously: the importance of informational support and literacy enhancement.

Conclusion: Our results shaped the strategies for publicizing the Pilot Phase of HKGP and laid a patient-oriented foundation for HKGP’s Main Phase.

Keywords

Hong Kong Genome Project / genomic medicine / whole-genome sequencing / public awareness / genomic literacy

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