Friday, May 6, 2016

Precision Medicine: Legal and Ethical Challenges (Report on HKU-Cambridge Conference)

HKU-Cambridge Conference on Implications of Precision Medicine
In recent years, the cost of sequencing the entire genome of an individual (a procedure known as whole genome sequencing, or WGS) has dropped to a point that its routine use in some clinical applications has become a reality in some areas of medicine in developed countries. The information gained from the WGS procedure is analyzed with a view to gaining insights into potential vulnerabilities to disease for that particular individual, on the basis that some kinds of genetic sequences are known to be, or are suspected to be associated with particular kinds of disease, or predict for vulnerability to genetically-associated conditions. The basis of an entire new arm of medicine, generally referred to as either personalized medicine or precision medicine, rests on the notion that the specific clinical information about a given individual (including but not limited to WGS information) may be harnessed to refine or tailor treatment choices and regimes for that individual, instead of taking every adult patient as a ‘standard’ patient for whom standard interventions and standard doses and methodologies are to be offered.
     While the science and methodology of genomic sequencing has now been mastered, the full significance of the information gained through the WGS of any given individual is much less well understood. Even less well explored are the legal and ethical implications of personalised medicine or precision medicine. With WGS, for example, a physician will have as part of the patient’s medical records the patient’s entire genome. But in the current state of medical science, we can only draw limited conclusions about its likely impact on a very limited number of genetically linked conditions. Much is uncertain, and must (except in certain very rare conditions) be couched not in terms of certainties, but in terms of probabilities of varying degrees of confidence. Analysing a patient’s genome for specific conditions cost money, time and resources. What kind of analyses should be offered to the patient, or be carried out? What are the duties of clinicians to their patients in respect of such decisions? By definition, genetic information is familial: the information about health vulnerabilities gained from a given patient is relevant not only just for the patient, but for the patient’s family and relations. What issues of privacy and consent are raised by such familial implications?
     On April 7-8 2016, the Centre for Medical Ethics & Law of the University of Hong Kong ( and the Centre for Law, Medicine and Life Sciences of the University of Cambridge ( were the joint hosts and organizers of an international conference on ‘Legal and Ethical Implications of Precision Medicine’ held at the premises of Faculty of Law of the University of Hong Kong to explore these and related issues. Over two days, 29 speakers drawn from the USA, Canada, UK, Australia, Japan, South Korea, Taiwan, Singapore and Hong Hong delivered presentations. Opening each of the four keynote sessions were particularly distinguished scholars in the field, including Dr Ron Zimmern of the PHG Foundation; Professor Henry T. Greely of the Center for Law and the Biosciences, Stanford University; Professor I. Glenn Cohen of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics of Harvard; Professor Donald Chalmers of the Centre for Law & Genetics of the University of Tasmania, and Professor Bartha Maria Knoppers of the Center of Genomics and Policy of McGill University. Abstracts and the slide presentations for each of the presentations are available at from the conference micro-site at'

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