Participants’ Rights and Other Precautions

1. If you have any comments or complaints during your participation in the Project, please contact HKGI:


This Project has been approved by multiple research ethics committees, including the Hospital Authority Central Institution Review Board, The Joint Chinese University of Hong Kong – New Territories East Cluster Clinical Research Ethics Committee, and Institutional Review Board of The University of Hong Kong/Hospital Authority Hong Kong West Cluster, to conduct the Project in each of the Partnering Centres (Hong Kong Children’s Hospital, Prince of Wales Hospital and Queen Mary Hospital).


2. If you have any queries about the Project, please call the genetic counsellor(s) of your affiliated Partnering Centre.

Hong Kong Children’s Hospital Phone: (852) 5741 3334
The Chinese University of Hong Kong/Prince of Wales Hospital Phone: (852) 3763 6069


The University of Hong Kong/Queen Mary Hospital Phone: (852) 2255 6203


3. For any enquiries about the rights of Project participants, please contact the Institutional Review Board or research ethics committee of your affiliated Partnering Centre.

Hospital Authority Central Institution Review Board Phone: (852) 2300 8527
Hong Kong Children’s Hospital Research Ethics Committee Phone: (852) 3513 3193
The Joint Chinese University of Hong Kong – New Territories East Cluster Clinical Research Ethics Committee Phone: (852) 3505 3935


Institutional Review Board of The University of Hong Kong/Hospital Authority Hong Kong West Cluster Phone: (852) 2255 4086



4. Collection of Personal Data

HKGI will access, use and retain participants’ personal data in accordance with the consent form for project participation. Personal data collected will be kept for seven years after the completion of HKGP. Afterwards, the personal data will be deleted.


According to the Personal Data (Privacy) Ordinance, Cap. 486, participants have the right to keep their personal data confidential, including those kept by or related to HKGP, their collection, retention, control, usage (including for analysis or comparison), transfer into or out of Hong Kong, non-disclosure, elimination and/or the right to handle or dispose of in any manner. If participants would like to access/correct any personal data held by HKGI, they can apply by contacting the genetic counsellor in respective Partnering Centre.


In addition, relevant research ethics committees and the regulatory authority(ies) can access data for verification of the research, pursuant to the relevant legal or statutory basis, as the case may be.


For any queries, please contact the Office of the Privacy Commissioner for Personal Data to ask about proper handling of personal data.


Phone: (852) 2827 2827

Fax: (852) 2877 7026



5. If you wish to apply to access your genomic data, please contact the Project team of your affiliated Partnering Centre. HKGI will process your application according to standard procedures.


6. Will joining HKGP Affect Personal Insurance?

In May 2020, the Hong Kong Federation of Insurers issued the “Best Practice on the Use of Genetic Test Results” (referred to below as the “Best Practice”). Under no circumstances will insurance companies demand any type of genetic test results related to HKGP for underwriting purposes.


For details of the “Best Practice”, please visit the Hong Kong Federation of Insurers website.


7. Genetic Discrimination in the Workplace

According to the Disability Discrimination Ordinance (DDO), Cap. 487, a disability includes one that presently exists, previously existed but no longer exists, may exist in the future, or is imputed to a person. Therefore, congenital genetic conditions and genetic predispositions are included as “disabilities” under the DDO.


An employer must have reasonable grounds and justification to require an employee to provide relevant medical reports. For example, such grounds and justification may include helping the organisation determine if the employee’s disability will preclude him/her from meeting the intrinsic requirements of his/her job, or helping the organisation consider accessible accommodations and facilities. Otherwise, it is illegal for employers, as a form of discrimination against employees, to request or require employees to submit medical information, including genetic and genomic information.


8. Compensation and treatment for injuries caused by participation in HKGP

Participating in HKGP will not expose you to extra risks, so HKGI will not provide compensation nor additional treatment.


9. Termination of Research

Currently, HKGI has no foreseeable plan to terminate the Project.