TABLE 2.
Proportion of Response Themes for Topic Areas 4 – 6.
| Topic Area | Inter-rater Percent Agreement(Kappa)* |
Coded Response Themes | Proportion of Responses** |
|---|---|---|---|
| Perceived Benefits n = 31 | 88%(0.74) | Increase understanding about health, behavior and origins of disease | 48% |
| Prevent/cure diseases & conditions | 35% | ||
| To be better informed in general | 10% | ||
| De-stigmatizes (removes personal blame) | 3% | ||
| Perceived Drawbacks/Barriers & Concerns n = 97 | 81%(0.48) | Unpleasant study procedures | 15% |
| Unintended harmful research outcomes | 14% | ||
| Violation of privacy and confidentiality | 12% | ||
| Fear of what the results will reveal about you | 11% | ||
| Stigma (embarrassment about mental illness in family) | 11% | ||
| Improper treatment of research participants | 10% | ||
| Questionable ethical practices (e.g. cloning) | 8% | ||
| Mistrust (e.g., suspicion about researchers’ motives) | 7% | ||
| Time commitment | 4% | ||
| Discrimination from insurance companies | 2% | ||
| Costs of participation | 2% | ||
| Incentives to Participating n = 47 | 84%(0.27) | Medical compensation (e.g., treatment, assessment) | 19% |
| Cash/monetary incentives | 15% | ||
| Following up with participants | 15% | ||
| Hospitable research site | 11% | ||
| Personal/family history of disorder investigated | 11% | ||
| Wanting to contribute to society | 11% | ||
| Assurance of safety/appropriateness of study | 9% | ||
| Study is advertised through appropriate channels | 4% |
Note
*
Figures computed before consensus was obtained.
**
Percentages obtained after consensus was obtained.