From: Qualitative thematic analysis of consent forms used in cancer genome sequencing
Form |    Source | Research scope | Type of results returned | Re-contacting choice? | Purpose of re-contact | Data sharing with? | Holder of coded data key | Risk of dis-crimination discussed? | Scope of consent | Right to withdrawal |
---|---|---|---|---|---|---|---|---|---|---|
2004 | UK | Genetic basis of cancer | General only | No comment | No comment | Affiliated research | PI | No | Study only | Consequences unclear |
2005 | US | A particular system | General only | No comment | No comment | Affiliated research | PI | Yes | Related Research | Samples destroyed but not info that has been used |
2005 | Australia | General scientific research | Individual, no option | Yes, may re-contact | Follow-up info | Any who apply | Third party | No | Choice Provided | Samples destroyed but not info that has been used |
2006 | US | Genetic basis of cancer | No comment | No, will re-contact | Follow up info and future research | Any who apply | PI | Yes | Blanket consent | Samples destroyed but not info that has been used |
2008 | UK | A particular system | None | No comment | No comment | Any who apply | Third party | No | Blanket consent | All info removed/destroyed |
2008 | US | Genetic basis of cancer | General only | No, will re-contact | Follow up info | Any who apply | PI | Yes | Blanket consent | Samples destroyed but not info that has been used |
2008 | US | General scientific research | General only | No comment | No comment | Any who apply | Identifying info not collected | Yes | Blanket consent | No withdrawal (samples anonymized) |
2008 | Canada | Genetic basis of cancer | None | No, will re-contact | Follow up info | No comment | Third party | Yes | Related research | Consequences unclear |
2009 | Canada | Genetic basis of cancer | Individual, with option | No comment | No comment | Affiliated researchers | PI | Yes | Study only | All info removed/destroyed |
2009 | Canada | Genetic basis of cancer | No comment | Yes, may re-contact | Future research | Affiliated researchers | Third party | Yes | Related research | Consequences unclear |
2009 | Belgium | Genetic basis of cancer | Individual, with option | No comment | No comment | Affiliated researchers | PI | No | Blanket consent | Samples destroyed but not info that has been used |
2009 | US | Genetic basis of cancer | Individual, with option | Yes, may re-contact | Follow up info | Any who apply | Identifying info may be shared | Yes | Choice provided | Samples destroyed but not info that has been used |
2009 | US | Genetic basis of cancer | Individual and general, no option | Yes, may re-contact | Follow up info and future research | Any who Apply | PI | Yes | Blanket consent | Samples destroyed but not info that has been used |
2010 | US | Cancer research | None | Yes, may re-contact | Follow up info and future research | No comment | Third party | Yes | Choice provided | No comment |
2010 | US | Un-determined | General only | No, will re-contact | Follow up info | Any who apply | Third party | Yes | Blanket consent | Samples destroyed but not info that has been used |
2010 | US | Genetic basis of cancer | No comment | Yes, may re-contact | Follow up info | Affiliated researchers | Third party | No | Related research | Samples destroyed but not info that has been used |
2010 | US | Genetic basis of cancer | None | Yes, may re-contact | Follow up info | Any who apply | PI | Yes | Blanket consent | Samples destroyed but not info that has been used |
2010 | Netherlands | General scientific research | None | No comment | No comment | No comment | Third party | No | Blanket consent | No comment |
2010 | UK | Undetermined | General only | No comment | No comment | Any who apply | Third party | Un-determined | Blanket consent | Samples destroyed but not info that has been used |
2010 | Australia | Genetic basis of cancer | Individual and general, with option | Yes, may re-contact | Follow up info | Affiliated researchers | Third party | No | Related research | All info removed/destroyed |
2011 | US | A particular system | None | Yes, may re-contact | Follow up info and future research | Any who apply | Third party | Yes | Choice provided | Samples destroyed but not info that has been used |
2011 | US | Cancer research | General only | No, will re-contact | Follow up info | Affiliated researchers | Identifying info may be shared | Yes | Blanket consent | Samples destroyed but not info that has been used |
2011 | US | A particular system | Individual, no option | No, will re-contact | Individual results | Any who apply | Third party | Yes | Choice provided | Samples destroyed but not info that has been used |
2011 | US | General scientific research | General only | No comment | No comment | Affiliated researchers | Third party | Yes | Blanket consent | Samples destroyed but not info that has been used |
None | Australia | Genetic basis of cancer | Individual, no option | No, will re-contact | Individual results | Any who apply | PI | No | Blanket consent | Samples destroyed but not info that has been used |
None | US | Genetic basis of cancer | None | No, will re-contact | Follow up info | Any who apply | PI | Yes | Blanket consent | Samples destroyed but not info that has been used |
None | US | Genetic basis of cancer | Individual, with option | No, will re-contact | Future research and individual results | Affiliated researchers | PI | Yes | Blanket consent | Consequences unclear |
None | US | General scientific research | None | No comment | No comment | Affiliated researchers | Third party | Yes | Choice provided | Samples destroyed but not info that has been used |
None | US | Genetic research | Individual, no option | No, will re-contact | Follow up info and future research | Any who apply | PI | Yes | Blanket consent | Samples destroyed but not info that has been used |
None | US | Genetic basis of cancer | None | No, will re-contact | Follow up info | Any who apply | PI | Yes | Blanket consent | Samples destroyed but not info that has been used |