Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore
Abstract
:1. Introduction
2. Methods
2.1. Survey Respondents
2.2. Survey Instrument
- Uses—the purposes respondents are willing to share data for.
- Health research;
- Quality improvement;
- Commercial uses.
- Users—with whom respondents are willing to share data.
- Government agencies;
- Private insurers;
- Pharmaceutical/biotech companies;
- Universities/research institutes;
- Hospitals.
- Data sensitivity—the types of data respondents would be sharing.
- Identifiable genetic data and your medical history;
- Identifiable genetic data without your medical history;
- De-identified genetic data and your de-identified medical history;
- De-identified genetic data without your medical history.
- Consent—the degree of control over the data.
- Consent for every study;
- One time consent only for all studies;
- Consent for some specific studies.
2.3. Data Analysis
2.4. Ethics Oversight
3. Results
3.1. Population Demographics and Willingness to Share Data
3.2. Trust in Institutions
3.3. Trade-Offs in Data Sharing Arrangements
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Characteristic | No. of Respondents |
---|---|
Age bracket | |
21–29 | 149 |
30–39 | 188 |
40–49 | 199 |
50–59 | 195 |
60–69 | 162 |
70–79 | 91 |
≥80 | 16 |
Gender | |
Female | 519 |
Male | 481 |
Ethnicity | |
Chinese | 635 |
Malay | 178 |
Indian | 177 |
Others | 10 |
Religion | |
Buddhism | 274 |
Christianity | 155 |
Hinduism | 111 |
Islam | 219 |
Sikhism | 41 |
Taoism | 20 |
No religion | 174 |
Others | 6 |
Self-rated health | |
Poor | 11 |
Fair | 110 |
Good | 471 |
Very good | 320 |
Excellent | 88 |
Monthly household income, SGD | |
No income | 78 |
≤2999 | 216 |
3000–5999 | 195 |
6000–9999 | 156 |
10,000–14,999 | 80 |
≥15,000 | 30 |
No response | 245 |
Housing Type | |
1-room flat | 30 |
2-room flat | 53 |
3-room flat | 264 |
4-room flat | 374 |
5-room flat | 211 |
Condominium | 33 |
Landed property | 35 |
Educational level | |
No formal education | 40 |
Primary | 139 |
Secondary/Post-secondary | 291 |
A-Level/Polytechnic | 166 |
Tertiary education | 364 |
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Lysaght, T.; Ballantyne, A.; Toh, H.J.; Lau, A.; Ong, S.; Schaefer, O.; Shiraishi, M.; van den Boom, W.; Xafis, V.; Tai, E.S. Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore. J. Pers. Med. 2021, 11, 921. https://doi.org/10.3390/jpm11090921
Lysaght T, Ballantyne A, Toh HJ, Lau A, Ong S, Schaefer O, Shiraishi M, van den Boom W, Xafis V, Tai ES. Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore. Journal of Personalized Medicine. 2021; 11(9):921. https://doi.org/10.3390/jpm11090921
Chicago/Turabian StyleLysaght, Tamra, Angela Ballantyne, Hui Jin Toh, Andrew Lau, Serene Ong, Owen Schaefer, Makoto Shiraishi, Willem van den Boom, Vicki Xafis, and E Shyong Tai. 2021. "Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore" Journal of Personalized Medicine 11, no. 9: 921. https://doi.org/10.3390/jpm11090921
APA StyleLysaght, T., Ballantyne, A., Toh, H. J., Lau, A., Ong, S., Schaefer, O., Shiraishi, M., van den Boom, W., Xafis, V., & Tai, E. S. (2021). Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore. Journal of Personalized Medicine, 11(9), 921. https://doi.org/10.3390/jpm11090921