title: Obtaining 'fresh' consent for genetic research with biological samples archived 10 years ago.
abstract: 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.
  
  
  METHODS
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands.
authors.forename: Eric
authors.initials: E
authors.lastname: Vermeulen
authors.affiliation: Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands.
authors.forename: Marjanka K
authors.initials: MK
authors.lastname: Schmidt
authors.affiliation: Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands.
authors.forename: Neil K
authors.initials: NK
authors.lastname: Aaronson
authors.affiliation: Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands.
authors.forename: Marianne
authors.initials: M
authors.lastname: Kuenen
authors.affiliation: Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands. Electronic address: f.v.leeuwen@nki.nl.
authors.forename: Flora E
authors.initials: FE
authors.lastname: van Leeuwen
mesh_terms: D000328:Adult; D000367:Age Factors; D001290:Attitude; D001943:Breast Neoplasms / Q000235:genetics / Q000473:pathology; D016009:Chi-Square Distribution; D004522:Educational Status; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D007258:Informed Consent / Q000523:psychology*; D008875:Middle Aged; D009426:Netherlands; D014015:Tissue Banks / Q000941:ethics