Table 1

Summary of Results

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


Allen and Foulkes BMC Medical Ethics 2011 12:14   doi:10.1186/1472-6939-12-14

Open Data