Thousands To Be Asked To Join HK Genome Database

The government has announced plans to create a large-scale genome database in the city, beginning with a study of the genetic codes of some 20,000 Hong Kong residents.

A pilot project is to begin in the middle of next year with the aim of improving the diagnosis and treatment of various diseases, including rare illnesses and those particularly prevalent in the SAR.

Officials said on Thursday that the first stage will involve genome sequencing on 2,000 patients, and this will take around a year.

After the pilot phase, there will be a review of the data collected before genome sequencing of another 18,000 patients gets underway.

"The objective of genomic sequencing is to sequence the genome of your body meaning that all the data in the genome will be known," said Professor Raymond Liang, who chairs the government's genomic medicine steering committee.

He explained that two categories of patients stand to benefit from the project.

"One is [those] with rare diseases which are undiagnosed. We don't know what they are, so we need to look at the whole genome and see if there are any abnormalities. And the other is clusters of cancer in a family, where again we don't know the cause."

So far, HK$1.2 billion has been set aside for the project.

A deputy health secretary, Fong Ngai, said experience in Britain shows that doctors are three to four times more likely to be able to diagnose a rare disorder if the patient's genome has been sequenced.

But Fong was asked whether people could have concerns that insurance companies would seek such information on their customers and whether the data could affect people's policies and premiums.

He replied that the industry was being asked to come up with guidelines stating that in most cases, the genomic information would not be requested.

"With the new guidelines going to be promulgated by the Hong Kong Federation of Insurers, the insurers actually cannot ask this question in their application forms," Fong said.

He added that more details on the implications for insurance coverage would be known in the coming days.

Health Secretary Sophia Chan, meanwhile, said officials would keep monitoring the local and international situation regarding genomics and the government could in future consider regulating insurers on the issue by way of legislation.