Experiences of participants with undiagnosed diseases and hereditary cancers during the initial phase of the Hong Kong genome project: a mixed-methods study
Participants were overall highly satisfied with the HKGP and genetic counselling experience. Satisfaction levels were comparable to overseas genomic programmes and locally provided healthcare services. Participants' major concerns on WGS reporting time could be addressed by strengthening the informed consent process to ensure their expectations align with project implementation. Emphasizing the long-term value of genomic research and its potential for personalized treatments may increase participant engagement.
Authors
- Desiree Man-Sik Tse (ORCID: https://orcid.org/0000-0002-6874-9507)
- Brian Hon‐Yin Chung (ORCID: https://orcid.org/0000-0002-7044-5916)
- Carmen S. Ng (ORCID: https://orcid.org/0000-0003-4219-3907)
- Jianchao Quan (ORCID: https://orcid.org/0000-0002-8386-8512)
- Annie Chu (ORCID: https://orcid.org/0009-0004-8147-2890)
- Fei-Chau Pang (ORCID: https://orcid.org/0000-0001-6970-7651)
- C.-W Yu (ORCID: https://orcid.org/0009-0002-9641-0831)
- Pui-Hong Chung (ORCID: https://orcid.org/0000-0003-0376-1457)
- C. Lai (ORCID: https://orcid.org/0009-0007-7043-1235)
- Su‐Vui Lo
- Samuel Yc Sze (ORCID: https://orcid.org/0000-0002-8089-5312)
Institutions
- Hong Kong Baptist University (HK)
- Food and Health Bureau (CN)
- Chinese National Human Genome Center (CN)
- Center for Genomic Science (IT)
- Hong Kong College of Health Service Executives (CN)
- University of Hong Kong (HK)
Publication Details
- Journal
- Human Genomics
- Published
- 2025-04-05
- DOI
- https://doi.org/10.1186/s40246-025-00746-5
- Primary Topic
- BRCA gene mutations in cancer
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Queen Mary University of London
- Health and Medical Research Fund