Page 68 - Read Online

Chu et al. J Transl Genet Genom 2023;7:66-78 https://dx.doi.org/10.20517/jtgg.2023.01 Page 62

secured data collection procedures; (2) ethical and patient-oriented informed consent; (3)
decommercialized promotional methods; (4) stress-free withdrawal initiated by participants anytime; and
(5) provision of accurate and colloquial genomic information.

The obstacles of any population-based health project’s marketing and publicity campaigns consist of the
uncertainties and contributions of sudden and outsider effects, such as drastic changes in the public
atmosphere and sentiment due to unprecedented social events. Fortunately, the HKGP Pilot Phase was
launched when Hong Kong was in a phase of political and societal calmness. Although it occurred during
the COVID-19 pandemic, the community had been immersed in personal health and well-being priorities.
As stated in our previous publication, a dedicated project website with user-friendly information, videos,
and publications on genomic medicine (as participants’ information and welcoming package) was
developed to complement and promote the launch of HKGP and to attract the public’s interest in genomics
and enhance genomic literacy (Available from: https://hkgp.org/en/) [5,19] . Based on the findings from the
current study, promotional materials for the “See the Unseen” campaign are patient-oriented, with the two
promotional videos adopting the stories of two patients (one adult and one minor). The background of the
HKGP is featured in educational videos by clinical geneticists and medical professionals. Cartoon videos
ensure simple, colloquial, and fun explanations for children [Figure 1].

With the project focusing on the entire patient journey, along with a robust and ethical informed consent
process, a highly secured and transparent data processing platform, and a colloquial and simple information
package, the Pilot Phase of HKGP was implemented successfully. Clinician and patient feedback were
positive, with a withdrawal rate of 0.08% in the first year (as of November 2022). All media coverage was, in
general, positive and supportive.

The HKGP now provides a valuable opportunity to learn how patients and their families respond when
offered WGS in a hybrid clinical and research context. Our local findings align with previous research
findings, showing that decisional considerations to participate in large-scale genome study (e.g., the HKGP)
is not based solely on a rational choice following a weighing the personal benefits and concerns but also on
the complex interactions between personal, psychosocial, and economic considerations, and the
institutional context where consent is sought. Transparency and openness are highly valued and recognized
as crucial elements of the HKGP public engagement strategy to encourage involvement and recruitment.

The importance of developing long-term strategies for enhancing genomic literacy and raising public
awareness for the general population is increasingly recognized by governmental, non-governmental, and
international organizations. Compared to Western countries, Hong Kong delivers genomic education at a
much later learning stage . Focus group patients, family members, and healthcare professionals
[20]
highlighted that the general population of Hong Kong is not well-equipped for the complexity of genomic
science and that overall genomic literacy must be significantly enhanced. As such, HKGP must provide
robust informational support by designing simple and colloquial presentations of clinical information and
genomic materials for different age groups. More importantly, strategies to enhance genomic literacy (e.g.,
funding of educational institutions, incorporation of genomic topics into formal education, and
[21]
establishment of training programs for healthcare professionals) should be implemented .
Recognizing the importance of enhancing genomic literacy, several national genome projects have included
[21]
education as one of their significant objectives . In particular, Canada, Finland, France, and the UK have
begun integrating genomics into primary and secondary education by updating the education curricula,
upgrading the textbook contents, offering online educational platforms, and providing teachers with