About the Hong Kong Genome Project (HKGP)
HKGP 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).
No. HKGP is a research project. Although it is not a regular clinical service, it may still be helpful to participants for diagnosis and treatment of diseases.
No. HKGP is completely different from the genetic testing services available on the market.
It is the first large-scale genome sequencing project in Hong Kong, planning to conduct Whole Genome Sequencing for 20,000 eligible cases for free in two phases. The data obtained will be used for clinical diagnoses and treatments of the cases.
This non-profit project aims to establish a genome database of the local population, testing infrastructure and a talent pool, to benefit patients and their family members, as well as to promote research in genomic medicine and related fields.
Currently, genetic testing companies on the market are commercial in nature. Their testing technology, scope and objectives are drastically different from HKGP.
Participant Eligibility
No. Only individuals eligible under the following criteria would be referred by designated Partnering Centres to join the Project:
- Clinical data shows that the undiagnosed disease you have may be genetically linked; or
- Clinical data shows that you may have a hereditary cancer; or
- Clinical data shows that your case is related to “genomics and precision health”; or
- You are a family member of either type of the above patients.
No. Participation in the Project is free. Hong Kong Genome Institute (HKGI) will perform Whole Genome Sequencing for the participants, prepare results reports and provide genetic counselling services for all participants for free.
No. Joining HKGP is purely voluntary, and patients are suggested to join upon thorough consideration. Whether you join the Project or choose to withdraw after joining will not affect your access to regular medical services.
All eligible individuals must be referred by designated Partnering Centres.
Project Participation
If you are eligible and agree to join the Project, the Project team will perform Whole Genome Sequencing for you without costs. We will also go through the results with you to help you and your family members better understand your health condition and to potentially gain new information that could lead to more effective treatment options.
If you are a patient with an undiagnosed disease, participating in the Project will:
- Assist clinicians to uncover the cause of a disease for you and possibly improve your chances of a correct diagnosis;
- Assist clinicians in devising clinical care and long-term treatment that is more appropriate for you;
- Help you and your family understand the genetic risks to facilitate family planning; and
- Potentially inform diagnoses for patients with similar symptoms.
If you are a patient with hereditary cancer, participating in the Project will:
- Help clinicians formulate more appropriate treatment for you; and
- Assist scientific researchers and medical professionals to understand the relationships between genetic variants and cancers that you and other patients may be living with.
If you are an individual that may benefit from genomic and precision medicine, participating in the Project will:
- Help you and your clinicians understand and identify the right treatment or intervention for you at the right time; and
- Assist scientific researchers and medical professionals in expanding knowledge in disease-related pathways, and facilitate scientific and therapeutic discovery.
If you are a family member of the above patients/individuals, participating in the Project will:
- Help the Project team gain insight into the medical situation of your family member by comparing their genome with yours, thus formulating a better care plan for your family member.
If you are a patient, the Project team will assist you in taking blood/saliva/buccal swab samples for genetic sequencing depending on your medical condition. Body tissue samples might also be necessary, but the team will only collect them during surgery arranged due to your clinical needs or from excised tissues after the surgery. Additional surgery would not be required to collect tissue samples for HKGP.
If you are a family member of a patient, the Project team will simply need you to provide a blood sample.
After obtaining your consent, HKGI will, when necessary, access and analyse your medical records in the Hospital Authority and Clinical Genetic Service, Department of Health, including:
- Records of hospitalisation or clinic visits;
- Clinical records and laboratory test results; and
- Radiology and imaging records such as magnetic resonance imaging (MRI) scans, X-rays or clinical photos, etc.
Moreover, if necessary, the Project team will contact you to collect more information, such as your health records kept at other medical institutions. The Project team will explain and invite you to sign extra consent forms if needed. You may decide at that time if you wish to provide additional information.
The Project team understands that participants would like to have results as soon as possible. To bring you accurate and reliable results to the best of our capabilities, the Project team will take the time that is necessary to analyse the data and interpret the results carefully and thoroughly. For these reasons, it is hard to set a timeline on completing the report. The Project team appreciates your patience and understanding on this matter.
Withdrawal from the Project
No. You can withdraw from HKGP at any time without giving a reason. To withdraw from HKGP, you only need to contact the Project team of your Partnering Centre. They will handle your application according to the standard procedures. For more information, please visit “Withdrawal from the Project” under “Notes for Participants” section on this website.
No. Whether you join the Project or choose to leave after joining, your access to or the quality of the medical services that you receive will not be affected.
If you decide to withdraw from the Project, you may request HKGI to destroy your biological samples (such as blood samples) and the genetic materials taken from them. If a request of such is not submitted, HKGI will store your samples along with those of other participants until the Project ends, while all the samples will be disposed all together.
Withdrawal from the Project implies that:
- The Project team will not use your data for any additional analysis or research;
- The Project team will cease using your data for clinical diagnosis and medical care purposes; and
- Qualified research institutions and personnel will not be able to access your de-identified data.
For more information, please visit “Withdrawal from the Project” under “Notes for Participants” section on this website.
Personal Data Protection
HKGP greatly values the privacy and the security of each participant’s data. The collection procedure for all personal and genomic data complies with the Hong Kong law, “Personal Data (Privacy) Ordinance” Cap. 486, and all data will be kept strictly confidential.
- Data Storage
HKGI will classify your personal information, medical records, and genomic data as confidential information, and properly store them in HKGI’s database located in Hong Kong.
- Access to Data
Only authorised designated Project team staff can access and use your medical records and genomic data for analysing your condition and preparing reports. The personal data that can identify you will only be used for your clinical diagnosis and care. You can also make a request to HKGI to access your genomic information.
HKGI will share only your de-identified data (data that does not include personal information) for research purpose. Qualified research organisations and researchers must obtain approval from HKGI’s Institutional Review Board to view and to analyse de-identified data on HKGI’s designated platform.
HKGI will access, use and retain your 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. The personal data will be deleted afterwards.
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 your 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
Email: communications@pcpd.org.hk
Yes. Participants can contact the Project team of their affiliated Partnering Centre. HKGI will process the application according to the standard procedures.
HKGI will classify participants’ personal information, medical records, and genomic data as confidential information, and properly store them in HKGI’s database located in Hong Kong.
Others
Should a participant lose the ability to make decisions on his/her own or has passed away before receiving his/her report, the Project team hopes to contact a designated person to inform him/her of the participant’s result.
As HKGP participant, you may choose to provide the contact information of the designated person, so that the Project team can try to contact and inform him/her about your result when necessary (including the Main Findings and Additional Findings report).
Please inform the Project team of your affiliated Partnering Centre as soon as you have made the decision to leave Hong Kong and thus corresponding arrangements can be made.
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 website of the Hong Kong Federation of Insurers.
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.