Sample and Data Processing

1.Sample Processing after Withdrawal

 

When you decide to withdraw from the Project, you may request HKGI to destroy your biological samples (such as blood samples, etc.) and the genetic materials taken from them. If you do not request your samples to be destroyed, HKGI will store your samples with those of other participants until the Project ends, and then dispose them all together.

 

2.Data Processing after Withdrawal

 

Withdrawal 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.

 

Your genomic and personal data has to be archived for the following reasons:

 

  • Ongoing research studies are using your de-identified data
    • Ongoing research studies refer to research studies that have started but not completed analysing your data before your withdrawal. Qualified research institutions and personnel have accessed and analysed the data via HKGI’s designated platform. To maintain scientific research integrity and consistency, they need to continue using the same set of data. Deleting your data will affect the results of these research projects. However, after your withdrawal, new research studies cannot utilise your data.

 

  • Completed research studies have already used your de-identified data
    • The Project team must safeguard the integrity of the findings of completed research studies. Missing data will affect the credibility of the results.

 

  • Audit purposes (for instance, to provide a record that you have once participated in the Project)
    • To meet the requirements for auditing, HKGI will access minimal information from archived data. This may include your name, date of birth, ID number, address and contact information. Only staff authorised by HKGI can access and use information from archived data. Information used for the audit will be classified as confidential. HKGI will scrutinise and record the use of such data to guard against improper usage.