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Table 1 Classification of units of analysis (UAs), headings addressing and options for secondary use

From: Consenting for current genetic research: is Canadian practice adequate?

a: Secondary use: classification of units of analysis (UAs) Document Total
Primary Primary plus addendum  
No Scope of research Generic 1   1
   Genetics 2   2
   Tissue Genetics 1   1
  Total 4   4
Yes Scope of research Cancer Genetics 1 2 3
   Cardiovascular Genetics 1 0 1
   Clinical Genomics 1 0 1
   Generic 1 0 1
   Genetics 12 7 19
   Mental Health Genetics 2 1 3
   Pediatric Genetics 2 2 4
   Tissue Genetics – Future 0 1 1
  Total 20 13 33
Total Scope of research Cancer Genetics 1 2 3
   Cardiovascular Genetics 1 0 1
   Clinical Genomics 1 0 1
   Generic 2 0 2
   Genetics 14 7 21
   Mental Health Genetics 2 1 3
   Pediatric Genetics 2 2 4
   Tissue Genetics 1 0 1
   Tissue Genetics – Future 0 1 1
  Total 24 13 37
b: Headings Frequency Percent Valid percent Cumulative percent
Valid Banking 1 2.7 2.7 2.7
  Banking for future research 1 2.7 2.7 5.4
  Biobanking for future research, consent 1 2.7 2.7 8.1
  Biobanking for future research, use of samples and data, consent 1 2.7 2.7 10.8
  Biobanking for future research, use of samples, consent, access to samples, risk 1 2.7 2.7 13.5
2 5.4 5.4 18.9
  Consent 2 5.4 5.4 24.3
  Consent, subject care 1 2.7 2.7 27.0
  Description of research, consent 1 2.7 2.7 29.7
  Description of research, consent, use of samples 1 2.7 2.7 32.4
  Description of the research, consent, future research 1 2.7 2.7 35.1
  Future contact/future research/other use 1 2.7 2.7 37.8
  Future use, biological specimens 1 2.7 2.7 40.5
  Introduction, optional studies 1 2.7 2.7 43.2
  Invitation to participate 1 2.7 2.7 45.9
  Main title, introduction, consent 1 2.7 2.7 48.6
  Not applicable 5 13.5 13.5 62.2
  No heading 1 2.7 2.7 64.9
  Optional studies, confidentiality 1 2.7 2.7 67.6
  Options to participants 2 5.4 5.4 73.0
  Other research 2 5.4 5.4 78.4
  Other Research, consent 1 2.7 2.7 81.1
  Procedures 1 2.7 2.7 83.8
  Purpose of study, study procedures 1 2.7 2.7 86.5
  Sample collection, project description, consent 1 2.7 2.7 89.2
  Secondary use 1 2.7 2.7 91.9
  Use of samples 1 2.7 2.7 94.6
  Withdraw 2 5.4 5.4 100.0
  Total 37 100.0 100.0  
c: Options for secondary use Frequency Percent Valid percent Cumulative percent
Valid Determined by consenting to participate in the study 5 13.5 13.5 13.5
  NA 5 13.5 13.5 27.0
  No future use plus other options 8 21.6 21.6 48.6
  Other research 1 2.7 2.7 51.4
  Various options 18 48.6 48.6 100.0
  Total 37 100.0 100.0