Table 2. Motivations and concerns: themes emerging from the qualitative interviews.
Themes |
---|
Motivations |
1. To learn personal disease risk or health-related information (30) |
To avoid or reduce their risk of disease (23) |
Via lifestyle, diet and/or exercise (10) |
Via medical intervention (4) |
Prepare or plan for the future (9) |
Emotionally prepare (2) |
Financially plan (3) |
Stored personal information could be of potential value to them in the future (4) |
For medication prescribing purposes (ie, pharmacogenomics) (3) |
For diagnostic purposes (1) |
As the science advances (4) |
Because of a known family history of disease (12) |
Because of a known or suspected personal history of disease (5) |
Because of a lack of information about family history (3) |
2. Curiosity (23) |
General curiosity (14) |
Interested in or curious about the science (11) |
The field of genetics/genomics (8) |
Science (2) |
Research (1) |
Curiosity about their genes (7) |
3. To contribute to research (15) |
Altruistic desire to help others and the field of medicine (3) |
To contribute to the advancement of science (5) |
4. Interested in their ancestry (13) |
5. To provide disease risk information for their children and other family members (11) |
For their existing children (7) |
For their family members generally (3) |
For their future potential children and family planning (3) |
6. Self-exploration (7) |
7. Novel opportunity (3) |
8. Useful professionally (1) |
Concerns |
1. Concern about adverse psychological impact of potential results (9) |
Concern about results regarding untreatable diseases/conditions (6) |
Non-specific (2) |
Alzheimer's disease (3) |
Huntington's disease (1) |
Concern about breast cancer (BRCA1/2) (1) |
Fear of the unknown (3) |
2. Concern about implications of potential results for children (4) |
Implications for existing children (3) |
Implications for future reproductive decision making (1) |
3. Concern about loss of privacy (3) |
4. Not concerned (19) |
Numbers in brackets denote the numbers of participants who mentioned the theme.