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Chu et al. J Transl Genet Genom 2023;7:66-78 https://dx.doi.org/10.20517/jtgg.2023.01 Page 56

understanding of genomic medicine by developing authoritative and user-friendly information and
publications. It also sought to formulate strategic engagement plans for targeted stakeholders, including
academic sectors, patient groups, and professional bodies, to promote awareness of genomic medicine and
its benefits.

Since its formulation in 2021, the Clinical Operations unit of the Scientific Team and the Corporate
Communications Unit of HKGI have been working tirelessly with the CEC to ensure that the Pilot Phase of
HKGP synchronizes with the will of the potential participants. The way this large-scale genomic project is
presented to the public is critical as the preliminary step in enhancing public genomic awareness. One
important preparatory task was to review the focus group results with the HKGI team to map out the
marketing and launching strategies for the first public HKGP campaign, “See the Unseen”. These issues are
complex and multifactorial and have not been documented in Chinese populations. Therefore, this
qualitative study was designed to collate insights by exploring the themes integrating participants’ views,
concerns, and aspirations on issues related to genomic studies and the HKGP.

METHODS
To harness unbiased information directly from stakeholders, an independent agency specializing in social
service marketing research was engaged to conduct three focus group sessions involving (1) undiagnosed
and rare disease patients and their family members; (2) hereditary cancer patients and their family
members; and (3) clinical geneticists and other medical subspecialists. Patients and family members of
undiagnosed and rare diseases and hereditary cancers, and healthcare professionals experienced in working
with these patients were eligible to participate in the focus group meetings. All eligible participants were
prospectively recruited at the three Partnering Centers of HKGI, Hong Kong Children’s Hospital, the Prince
of Wales Hospital, and the Queen Mary Hospital. All eligible participants were informed of the study’s
objectives and data confidentiality standards and were invited to participate in the focus group interviews
conducted by the independent agency. The Pilot and Main Phases of the HKGP and all related studies in the
HKGP were covered by ethics approvals granted by the Central Institutional Review Board, the University
of Hong Kong/Hospital Authority Hong Kong West Cluster, the Joint Chinese University of Hong Kong/
New Territories East Cluster, and the Department of Health (HKGP-2021-001, HKGP-2022-001,
UW 21-413, 2021.423, LM 257/2021). All focus group participants provided written informed consent to
participate and be audio-recorded for publication.

An experienced facilitator conducted all focus groups from an independent agency that was not involved in
the planning and execution of the HKGP. Each focus group consisted of a two‐hour session, including a
five‐minute break. The discussion was conversational, guided by a semi‐structured Focus Group Discussion
Guide with a theme list. A set of carefully determined questions were included in the Focus Group
Discussion Guide to assist the facilitator in leading the discussion, which included nine sections:
introduction, participant’s diagnostic odyssey, understanding of and perspectives toward WGS, HKGI, and
HKGP, participant’s views toward the Project’s campaign, marketing and launching strategies for the
HKGP, campaign ambassadors, promotional materials and sources, and public engagement. PowerPoint
prompts facilitated focus group discussion to inform the participants on the purpose of the discussion, the
HKGP, and the project campaign. Participation was anonymized to preserve confidentiality.

Data capture, coding process, and thematic analysis of qualitative data
The focus groups were conducted in Cantonese Chinese, audio-recorded after obtaining written informed
consent, and transcribed verbatim by a technical assistant at the HKGI. Another research assistant reviewed
and validated the audio recordings and transcripts independently. Data collected from the focus group