Table 1 Specific requirements of the IC document to the MGSP
Key issues | Description |
|---|---|
Research purpose | • Explanation of personal genome research |
• Description of whole-genome/exome sequencing, if applicable | |
• Description of general research purposes of genotype-phenotype information | |
Collaborations with external institutions | • List of names of relevant institutions and principle investigators in the MGSP |
Data sharing | • Description of significance and purpose of data sharing |
• Two levels of access to national/public databases | |
Withdrawal of consent | • Inability of withdrawal of consent for data use after they are registered to databases |
Risk assessment and management | • Physical interventions |
• Explanation of associated ethical, legal and social issues | |
• Genetic counseling |