Table 1.
Priority Ranking of Consensus Items from Focus Groups
| Raw Score | Total Score | Median | |
|---|---|---|---|
| Spanish Speaking | |||
| Moral/ethical codes | 1,4,4,5,5,5 | 24 | 4.50 |
| Latino participation | 1,2,3,5,5 | 16 | 3.00 |
| Privacy | 1,3,4,4 | 12 | 3.50 |
| Government mistrust | 3,4,5 | 12 | 4.00 |
| Why do this study? | 3,4,5 | 12 | 4.00 |
| Education | 1,1,3,4 | 9 | 2.00 |
| Discrimination | 3,3 | 6 | 3.00 |
| Classification of groups—issues of identity | 1,4 | 5 | 2.50 |
| Limitations in genetic advances | 1,2 | 3 | 1.50 |
| Genetic stereotypes | 5 | 5 | |
| Concerns for those who are handicapped | 3 | 3 | |
| Genetic engineering | 2 | 2 | |
| Religion vs. science | 2 | 2 | |
| Youth | |||
| Scientific accuracy | 1,1,1,2,4,4,5,5,5,5,5 | 37 | 5.00 |
| Playing god/control/funding | 2,3,3,4,4,4,5,5 | 30 | 4.00 |
| Privacy/confidentially | 1,2,3,4,4 | 25 | 3.00 |
| Disparities/access | 1,1,1,2,2,2,4,4,5 | 25 | 2.00 |
| Identity | 2,5,5,5 | 17 | 3.50 |
| Enhancement vs. health issues | 1,2,2,2,3,3,4 | 17 | 2.50 |
| Faith/belief/religion | 2,3,5 | 10 | 3.00 |
| International issues | 2,2,3,3 | 10 | 2.50 |
| Environment | 1,3,4 | 8 | 3.00 |
| Variation | 1,1,3 | 5 | 1.00 |
| Professional | |||
| Who decides who controls information? | 2,4,4,4,5,5,5,5 | 34 | 4.50 |
| Who will benefit—all populations should have access? | 1,2,2,4,4,5,5,5 | 28 | 4.50 |
| Will this info stigmatize? Discrimination/prejudice | 3,3,3,3,3,4,4,5 | 28 | 3.00 |
| Concern about profit motive, patents, intentions | 1,1,3,3,3,3,4 | 18 | 3.00 |
| Enhancement vs. treatment | 2,4,5,5 | 16 | 4.50 |
| How will this change history, diversity—genocide | 2,2,2,4,5 | 15 | 2.00 |
| Environmental issues | 1,1,2,3,4 | 11 | 2.00 |
| Regulation vs. encouraging research | 1,1,3,4 | 9 | 2.50 |
| Lack of trust in government | 1,1,2 | 4 | 1.00 |
| Religious issues | 1,1,2 | 4 | 1.00 |
| Definitions of community identity | 2 | 2 | |
| Clients | |||
| Priority over poverty and health care? | 1,5,5 | 11 | 5.00 |
| Drug companies use a profit motive and hurt people even more? | 2,4,5 | 11 | 4.00 |
| Lack of access—poor/disenfranchised | 1,4,4 | 9 | 4.00 |
| Consider quality of life? | 1,2,5 | 8 | 2.00 |
| Will this benefit privileged and powerful and men over women? | 3,3 | 6 | 3.00 |
| Will this create more ways to treat the disadvantaged unfairly? | 2,2 | 4 | 2.00 |
| What if information falls into the hands of sick scientists, government/terrorists? | 4 | 4 | |
| How will this change decision making? | 3 | 3 | |
| Will genocide occur based on this information? | 3 | 3 | |
| Fear of misuse of information | 1 | 1 | |
| Privacy and confidentiality | 0 | ||
| This will make classes and classes divide | 0 | ||
| Will classes put me in a box and stereotype me? Labels | 0 | ||
| Will HapMap consider the environment? | 0 | ||
| Will this create new definitions of what race and ethnicity mean? | 0 | ||