7 August 2020
The UK is a global leader in genomics, but should perhaps look to its laurels as other countries increase their focus and capability in this area.
The Hong Kong government recently announced a new strategy for genomic medicine, based on recommendations from a formal Steering Committee on Genomic Medicine, originally convened in 2017 as part of policy plans to harness the potential of new technologies for public health and medicine – or as the PHG Foundation would describe it, making science work for health; the Committee made recommendations in late 2019.
The strategy is outlined in a policy report, Strategic development of genomic medicine in Hong Kong, which recognised the ‘dedicated work of passionate clinicians and researchers’ in developing both high quality clinical services and impressive research outcomes in genomic medicine (recent work in developing paediatric precision medicine in Hong Kong is a good example of this). Key stakeholders are noted to include the Food and Health Bureau, the Department of Health and Hospital Authority, as well as professional bodies and the academic and commercial sectors.
A ‘clear policy to steer and coordinate the efforts of various institutions’ is said to be necessary for the region to progress to the next level, and to this end the report sets out recommendations for action in order to develop standardised clinical services; more effective and efficient laboratory services and uptake of new technologies; improved genomic literacy and specialisation among health professionals; and due consideration of the ethical, legal and social implications of developments in genomic medicine.
This initiative, originally announced in 2018 and with a budget of HK$1.2 billion already allocated, aims to sequence up to 50,000 genomes in the next six years; it will be led by a new Hong Kong Genome Institute (HKGI) and will focus on patients with suspected undiagnosed rare disorders, including hereditary cancers. As with the UK 100,000 Genomes Project, it will include public engagement work alongside research, and generate a population database to improve both research and clinical care.
Building on a previous framework for service provision, the Hong Kong Children’s Hospital will play a key role in developing standardised genetic and genomics services (a critical element in the UK’s own NHS Genomic Medicine Service), translating research and training professionals, supported by an enhanced laboratory network and shared referral systems across the Health Authority, Department of Health, universities and private sector, to optimise equitable access to testing for patients. A centralised system for the more specialised testing is suggested, which
The report calls for an expansion of training in Hong Kong, as well as efforts to attract international talent, proposing the creation of new posts and professional training programmes for clinical geneticists, pathologists, genetic counsellors and bioinformaticians. The Hong Kong Academy of Medicine will work with other professional bodies to deliver enhanced training for clinicians.
Recognising the rise in direct-to-consumer (DTC) genetic and genomic testing, including from overseas, the strategy calls for enhanced public education to enable informed decision-making. This will include understanding of clinical validity and utility, and the limitations as well as privacy and ethical implications of testing. The risks of health-related testing undertaken without suitable professional advice and support (including unnecessary investigations or delayed health care) are noted, with plans for a review of professional qualifications for delivering testing as well as inclusion of human genetic tests within a new regulatory system already being developed for medical devices.
These are bold and exciting policy moves to expand and capitalise on existing expertise in genomic medicine in Hong Kong. The strategy aims to improve clinical services and develop a population database to underpin further research as well as care; this is vital, since both ‘normal’ genetic variation and the prevalence of certain genetic diseases is known to vary between populations with different ethnic roots.
However, what is perhaps even more significant is that the strategy takes a holistic view, focusing also on effective regulation, equitable access and improved public engagement with and understanding of genomics and health. This will undoubtedly optimise the value of the more standard plans to enhance research and clinical expertise and capacity; it may also yield some very useful and interesting findings from which other countries can learn. Discussion of ethical issues in genomics and health has traditionally been dominated by Western cultures, but this provides a very limited perspective since different countries and cultures may understandably have quite divergent priorities and standards.
Commenting on the new strategy, Hong Kong Secretary for Food and Health, Prof Sophia Chan (who convened the expert Steering Committee behind it) said: “The Government is determined to promote local development of genomic medicine, so that our patients could benefit from more precise diagnosis and more effective treatment”. The Food and Health Bureau will lead implementation of the policy recommendations in Hong Kong.