Table 4 Willingness for overseas (non-Australian) sharing or use of genomic data (n = 155 comments from 127 respondents).
Theme | Quote |
|---|---|
Purpose (n = 31) | |
Regarding overseas [non-Australian] research, pharma (local and overseas), government (local and overseas) and other companies (local and overseas) I would not immediately object to the use of the data as I would hope it’s for altruistic research regardless of location. I would like to know for what purpose genomic data is being used by foreign governments and companies (especially non-medical or pharma) is. (Hereditary, Adult) Doesn’t depend on where they are; it depends on what they want to use it for. (Hereditary, Parent,) | |
Systems and Processes (n = 63) | |
Ethical standards (n = 14) | Would need to ethically match Australian standards (Hereditary, Adult) |
Privacy standards and data security (n = 22) | There is a great variability in the laws and regulations regarding; firstly data security, secondly the rights of data holders to share/sell data and thirdly the ability to patent genetic material. (Haem/Malignant, Adult,) |
Legal frameworks (n = 7) | Depends what laws/regulations/processes/standards they have in place. (Hereditary, Adult) Countries that do not have anti-corruption processes in place would concern me. I would want to know the data was secure and we could not be tracked down. (Hereditary, Parent). |
Approval processes (n = 4) | Assume there is some ‘rigour’ by which access is approved- Australia too (i.e., genuine research purposes) (Haem/Malignant, Adult) Only quality credible researchers should have access (Haem/Malignant, Adult) |
Alliance/political structures (n = 14) | Countries with which Australia has an alliance; i.e., US, UK. (Hem/Malignant, Adult) Prefer democratically run countries over dictatorships etc (Haem/Malignant, Adult) |
Health and medical research systems (n = 2) | Countries with Humanitarian and effective medical facilities and supported research programs (Hem/Malignant, Adult) Ethical Health systems e.g., Europe and some 3rd World. Not US (Hereditary, Adult). |
Uncertain (n = 8) | I am unsure whether I would be concerned depending on the country my data was being used by was (Hereditary, Parent) |
Mistrusting (n = 17) | Not interested in unfriendly countries (Haem/Malignant, Adult) |
Restrict to Australia (n = 13) | Do not wish for data sharing overseas (Hereditary, Adult) |
Unrestricted (n = 23) | I want as many people working together to try to make peoples lives better (Hereditary, Adult) |
