Table 3 Percentage of responses to sharing, perceived benefits and risks across scenario
Scenario | If you were the patient/parent of the patient/research participant in this scenario, would you be happy for the doctor/researcher to share your/their results? | If you did decide to share your/your child’s genomic information in this situation, do you think there would be any benefits or positive consequences? | If you did decide to share your [your child’s] genomic information in this situation do you think that there would be any risks or negative consequences? | ||||||
|---|---|---|---|---|---|---|---|---|---|
Yes | No | Depends | Yes | No | Yes | No | n | ||
S1 | Clinician-led sharing of clinical genomic data for diagnosis (infant patient) | 82.5 | 2.5Y5,Y7 | 15.0Y7 | 92.5 | 7.5Y5 | 30.0 | 70.0 | 40 |
S2 | Clinician-led sharing of clinical genomic data for diagnosis (adult patient) | 90.0 | 3.3Y5,Y7 | 6.7Y7 | 96.7 | 3.3Y5 | 30.0 | 70.0 | 30 |
S3 | Clinician researcher-led sharing of genomic data for genome wide association study | 87.8 | 4.9Y5,Y7 | 7.3Y7 | 82.9 | 17.1 | 31.7 | 68.3 | 41 |
S4 | Researcher-led sharing of pre-existing genomic data for research based on waiver of consent, indigenous findings and return of results | 73.3 | 6.7Y7 | 20.0Y7 | 90.0 | 10.0 | 26.7 | 73.3 | 30 |
S5 | Sharing of genomic data obtained by a company-sponsored clinical trial based on participant consent | 62.5 | 21.9 | 15.6Y7 | 71.9 | 28.1 | 46.9 | 53.1 | 32 |
S6 | Researcher-led sharing of genomic data for research from multiple sources | 76.7 | 10.0Y7 | 13.3Y7 | 86.7 | 13.3 | 23.3 | 76.7Y7 | 30 |
S7 | Citizen-led sharing of genetic data from direct-to-consumer testing | 30.0 | 30.0 | 40.0 | 90.0 | 10.0 | 47.5 | 52.5 | 40 |
Total | 71.2 | 11.5 | 17.3 | 87.2 | 12.8 | 34.2 | 65.8 | 243 | |