Abstract
CONCLUSION
Obtaining fresh consent for genetic research with stored tissue is possible at the cost of time and effort. Most patients give consent for research with residual tissue.
RESULTS
A consent form was obtained from 90%; 3% withheld consent for the use of archived tissue. A completed questionnaire was returned by 84%. 'One-time general consent' was considered to be the best procedure for consenting to research with stored tissue by 56%, 23% favoured the current 'opt-out' procedure; 21% did not know or had no preference.
OBJECTIVE
To obtain consent from breast cancer survivors to use residual tissue for a study on carriership of germ line mutations in the BRCA 1 and 2 genes. To investigate which consent regimen patients prefer for research with archived tissue.
PARTICIPANTS
One hundred and thirty-two patients surgically treated for breast cancer between 1995 and 1997 in the Netherlands Cancer Institute were mailed a consent form and a questionnaire.