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 | ||