Notes for Participants

What are the potential risks of joining HKGP?


1. Process of Providing Samples

  • While drawing blood, you may experience bruising, mild discomfort or feeling anxious, which have been reported by a small proportion of individuals who have experienced this procedure previously.
  • If it is necessary to collect buccal swab samples, the process may cause mild discomfort or anxiety, as reported by a small proportion of individuals who have experienced this procedure previously.
  • If saliva samples are needed, the whole collection process is simple and safe.
  • If body tissue samples are needed, the Project team will collect them only when you clinically require a surgery, or from excised tissues after you have had your surgery. Collecting tissues for HKGP will not require additional surgeries nor add risks to your treatment plan.


2. Impact of Report Results

The Project aims to help clinicians understand, diagnose, and address patients’ conditions. However, it is possible that the results from “Whole Genome Sequencing” analysis may not lead to definitive identification of the cause of illness. Even if a cause is identified, it may not immediately result in better treatment options. Therefore, some worry and anxiety may be arisen from the report results.


3. Impact on Family

Each person is unique, but your genome contains some sequences that are shared with other individuals in your bloodline, such as parents, siblings, and children. Therefore, your report results may reveal insights about your family members’ health and genetic risk factors.


Although the thought of sharing these findings might make you and/or your family members uneasy, your family members may actually want to know these results so that they can make their own informed decisions about whether to conduct further tests or follow-up. If potential risk factors are found, HKGI will notify you through the Partnering Centre. Only then will you have to decide if the Project team can disclose the results to your family.


4. Data Security

As mentioned in section three of Project Participation, HKGI will deploy all practical and feasible steps to safeguard the privacy and the security of all participants’ data. All analysis results and personal data will be processed and monitored according to international standards, to guarantee that the data is protected by rigorous confidentiality measures.


However, with rapid technological advancement, it is possible that the de-identification technology could be decoded in the future. Although the Project team will continuously update the security measures to protect participants’ privacy, they cannot eliminate the very minimal chance of a data breach or leak. In case of data breach, HKGI will follow prevailing guidelines from the Office of Privacy Commissioner for Personal Data and inform the affected participants.


If any person/organisation/company deliberately discloses your data, or intentionally identifies you from the de-identified data, HKGI will ban them from using HKGP’s data again. If the breaching actions are illegal, HKGI will report the matter to relevant law enforcement agencies.