Table 3. Quantitative results for motivations for, and concerns about, personal genome sequencing: closed-ended questionnaire items.
| N=35 | |||
|---|---|---|---|
| Motivations | Very important | Somewhat important | Not important |
| Curiosity about my genes | 25 (71.4%) | 9 (25.7%) | 1 (2.9%) |
| Find out what I can do to improve my health | 24 (68.6%) | 8 (22.9%) | 3 (8.6%) |
| Find out about diseases for which I am at risk | 22 (62.9%) | 12 (34.3%) | 1 (2.9%) |
| Participate in research to help others | 17 (48.6%) | 17 (48.6%) | 1 (2.9%) |
| Interested in my ancestrya | 14 (40.0%) | 16 (45.7%) | 4 (11.4%) |
| Interested in specific medical conditions | 12 (34.3%) | 13 (37.1%) | 10 (28.6%) |
| Want information about risk of health conditions for children and grandchildrenb | 12 (34.3%) | 12 (34.3%) | 5 (14.3%) |
| No cost to me to participate | 11 (31.4%) | 8 (22.9%) | 16 (45.7%) |
| People I know have participated or are participating | 6 (17.1%) | 13 (37.1%) | 16 (45.7%) |
| Adopted and want information about geneticsc | 0 (0%) | 0 (0%) | 0 (0%) |
| Concerns | N (%) responding ‘yes' | ||
| Individual items | |||
| Concerns related to potential privacy issues about my data | 20 (57.1%)d | ||
| Concerns related to not knowing how I will feel about my results | 10 (28.6%) | ||
| Concerns related to learning about my disease risk from whole genome sequencing | 8 (22.9%) | ||
| Concerns related to the quality and reliability of the testing lab and the results | 5 (14.3%) | ||
| Other concerns (please specify below) | 2 (5.7%)e | ||
| I do not have concerns about participating in this study and receiving my personal results from whole genome sequencing | 12 (34.3%) | ||
| Total number of concerns | |||
| 0 | 12 (34.3%) | ||
| 1 | 10 (28.6%) | ||
| 2 | 8 (22.9%) | ||
| 3 | 2 (5.7%) | ||
| 4 | 2 (5.7%) | ||
| 5 | 1 (2.9%) | ||
| Overall concerns | |||
| Yes | 23 (65.7%) | ||
One (2.9%) participant responded ‘Not applicable'.
Six (17.1%) participants responded ‘Not applicable'.
All 35 (100%) participants responded ‘Not applicable'
Ten participants gave further details regarding their concerns about privacy, as follows: Future employer, insurance, people in this field have access to my information; Concerned about other people at Sinai learning private information; Insurance economic concerns, don't want to be discriminated against; Insurance concerns for myself and my children; At some point it could be accessed by insurance companies to deny coverage for myself and my children; Nothing specific really an emotional kind of thing because it's so new and unknown. Just the unknown; Insurance concerns; Concerned about the future and implications for children (eg, wouldn't want my kids to find out I'm not their father—not that that is a concern, but that's the idea); Insurance and job discrimination; No concerns considering having the options on the informed consent document.
The ‘other' concerns were: (1) ‘How it might change the priorities in life' and (2) ‘How it might impact family members. Regarding reliability—no concerns since anything found will need to be confirmed.'