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Page 16 Chu et al. J Transl Genet Genom 2022;6:290-303 https://dx.doi.org/10.20517/jtgg.2022.02

Table 2. List of secondary findings reported by the Hong Kong Genome Project
Conditions Genes Adults Children
Lynch syndrome MLH1 √ x
MSH2 √ x
MSH6 √ x
Familial adenomatous polyposis APC √ √
MYH-associated polyposis MUTYH √ x
Hereditary breast and ovarian cancer syndrome BRCA1 √ x
BRCA2 √ x
Von Hippel-Lindau syndrome VHL √ √
Multiple endocrine neoplasia MEN1 √ √
RET √ √
Familial hypercholesterolaemia LDLR √ √
APOB √ √
PCSK9 √ √

Table 3. The three-tier model of informed consent of Hong Kong Genome Project
Age
Category Consent Assent
(years)
Adult ≥ 18 Signed by participant Not applicable
participants
Child 16 to 17 Signed by parent/legal guardian and co-sign by child Materials aiding assent process
participants participant
< 16 Signed by parent/legal guardian Materials aiding assent process or verbal assent
(whenever possible)

and trained to execute this Project.

Genetic counselling is a relatively novel and unorganised profession in Hong Kong. Our existing genetic
counselling related services have been supported by a group of dedicated and on-the-job trained frontline
medical personnel (with or without an overseas board-certified qualification). As the demand for genomic
and genetic services has expanded rapidly in the past decade, there is an urgent need to standardise the
genetic counselling practice and facilitate training in Hong Kong.

One of the prevailing challenges is the lack of accredited programmes and Board to train and register new
genetic counsellors or those who are practising in the field. This further exacerbates the insufficient pool of
professional genetic counsellors to meet the rapid growth in service demands in Hong Kong. There is also a
pressing need to delineate the scope of practice, code of ethics, and quality assurance of the industry.
Without the start of a blueprint or a governing body, it is difficult to plan and implement continuous
training and development of genetic counselling practice.

HKGP acts as a catalyst and sets the stage in providing a platform to nurture a group of genetic counsellors
by providing funding and resources for Partnering Centres to hire designated genetic counsellors. Through
enabling the role of genetic counsellors in the operational workflow, awareness and knowledge amongst
other healthcare professionals concerning the scope of practice of genetic counsellors can be enhanced.