[1] Schaefer, G.O., Tai, E. & Sun, S. Precision Medicine and Big Data. ABR (2019) 11: 275. https://doi.org/10.1007/s41649-019-00094-2
[2] Marquart J, Chen EY, Prasad V. Estimation of the Percentage of US Patients With Cancer Who Benefit From Genome-Driven Oncology. JAMA Oncol. 2018;4(8):1093–1098. doi:10.1001/jamaoncol.2018.1660
[3] Chowkwanyun M1, Bayer R1, Galea S1."Precision" Public Health - Between Novelty and Hype. N Engl J Med. 2018 Oct 11;379(15):1398-1400. doi: 10.1056/NEJMp1806634. Epub 2018 Sep 5; Aron DC. Precision medicine in an imprecise and complex world: Magic bullets, hype, and the fuzzy line between health and disease. J Eval Clin Pract. 2019 Dec 21. doi: 10.1111/jep.13306.
[4] National Institute of Health (2020). What is the Precision Medicine Initiative? Available at: https://ghr.nlm.nih.gov/primer/precisionmedicine/initiative Accessed on 31 March, 2020.
[5] Sanders S, Oberst J (Eds): Precision Medicine in China. In American Association for the Advancement of Science, Washington DC: Science/AAAS Custom Publishing Office; 2016, p. 41. https://www.sciencemag.org/sites/default/files/custom-publishing/documents/Bioyong-Precision-Medicine-supplement_Final.pdf
[6] Allen J, Adams C, Flack F. The role of data custodians in establishing and maintaining social licence for health research. Bioethics 2019;33(4):502–10.
[7] Carter P, Laurie GT, Dixon- Woods M. The social licence for research: why care. data ran into trouble. J Med Ethics 2015;41(5):404–9.
[8] Temperton J, 2016. NHS care.data scheme closed after years of controversy Wired 6 July 2016 https://www.wired.co.uk/article/care-data-nhs-england-closed
[9] Carter P, Laurie GT, Dixon- Woods M. The social licence for research: why care. data ran into trouble. J Med Ethics 2015;41(5):404–9.
[10] Department of Statistics, Singapore (2020). Population and Population Structure. Available at: https://www.singstat.gov.sg/find-data/search-by-theme/population/population-and-population-structure/latest-data Accessed on 31 March, 2020.
[11] National Research Foundation (2019) Health and Biomedical Sciences. Available at: https://www.nrf.gov.sg/rie2020/health-and-biomedical-sciences. Accessed on 31 March, 2020.
[12] Wu et al. (2019) "Large-Scale Whole-Genome Sequencing of Three Diverse Asian Populations in Singapore." Cell 179(3): 736-749.e715.
[13] Bylstra, Y., S. Davila, W. K. Lim, R. Wu, J. X. Teo, S. Kam, T. Lysaght, S. Rozen, B. T. Teh, K. K. Yeo, S. A. Cook, P. Tan and S. S. Jamuar (2019). "Implementation of genomics in medical practice to deliver precision medicine for an Asian population." npj Genomic Medicine 4(1): 12.
[14] Chin, N. C. (2015). Big Data Making A Great Difference in Healthcare. Available at: https://www.ihis.com.sg/Latest_News/News_Article/Pages/Big_Data_Making_A_Great_Difference_in_Healthcare_TODAY.aspx Accessed on 31 March, 2020.
[15] Editor (2018). UK Biobank data on 500,000 people paves way to precision medicine. Nature 562, 163-164.
[16] Tham I: Personal info of 1.5m SingHealth patients, including PM Lee, stolen in Singapore's worst cyber attack. The Straits Times, Singapore, 20 July 2018.
[17] Chang A-L: Data of 14,200 people with HIV leaked online by US fraudster who was deported from Singapore. The Straits Times, Singapore, 28 Jan 2019.
[18] Kalkman S, van Delden J, Banerjee A, Tyl B, Mostert M, van Thiel G. Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence. J Med Ethics. 2019 Nov 12. pii: medethics-2019-105651. doi: 10.1136/medethics-2019-105651.
[19] Bylstra Y, Lysaght T, Thrivikraman J, Watson S, Tan P. (2017) Ethical frameworks for obtaining informed consent in tumour profiling: an evidence-based case for Singapore. Hum Genomics.Dec 8;11(1):31. .
[20] Grady C, Eckstein L, Berkman B, et al. (2015) Broad Consent for Research With Biological Samples: Workshop Conclusions. Am J Bioeth. 15(9):34–42.
[21] McGuire AL1, Oliver JM, Slashinski MJ, Graves JL, Wang T, Kelly PA, Fisher W, Lau CC, Goss J, Okcu M, Treadwell-Deering D, Goldman AM, Noebels JL, Hilsenbeck SG. To share or not to share: a randomized trial of consent for data sharing in genome research. Genet Med. 2011 Nov;13(11):948-55. Mikkelsen RB, Gjerris M, Waldemar G, Sandøe P. Broad consent for biobanks is best - provided it is also deep. BMC Med Ethics. 2019 Oct 15;20(1):71.
[22] Lim, H. Y. (2017). Data Protection in the Practical Context – Strategies and Techniques Singapore, Academy Publishing Singapore;
[23] Rocher, L., Hendrickx, J.M. & de Montjoye, Y. Estimating the success of re-identifications in incomplete datasets using generative models. Nat Commun 10, 3069 (2019). https://doi.org/10.1038/s41467-019-10933-3
[24] Kayaalp M. Modes of De-identification. AMIA Annu Symp Proc. 2018;2017:1044–1050. Published 2018 Apr 16.
[25] Patil S, Lu H, Saunders CL, et al. Public preferences for electronic health data storage, access, and sharing - evidence from a pan- European survey. J Am Med Inform Assoc 2016;23(6):1096–106.
[26] Shah N, Coathup V, Teare H, et al. Sharing data for future research- engaging participants’ views about data governance beyond the original project: a direct study. Genet Med 2019;21(5):1131–8.
[27] Willison DJ, Keshavjee K, Nair K, Goldsmith C, Holbrook AM; Computerization of Medical Practices for the Enhancement of Therapeutic Effectiveness investigators. Patients' consent preferences for research uses of information in electronic medical records: interview and survey data. BMJ. 2003 Feb 15;326(7385):373.
[28] Goodman D, Johnson CO, Bowen D, et al. De- identified genomic data sharing: the research participant perspective. J Community Genet 2017;8(3):173–81.
[29] Mathews DJH, Rabin JT, Quain K, Campbell E, Collyar D, Hlubocky FJ, Isakoff S, Peppercorn J. Secondary Use of Patient Tissue in Cancer Biobanks. Oncologist. 2019 Dec;24(12):1577-1583. doi: 10.1634/theoncologist.2018-0376. Epub 2019 Jun 10.
[30] Nair K, Willison D, Holbrook A, Keshavjee K. J Health Serv Res Policy. Patients' consent preferences regarding the use of their health information for research purposes: a qualitative study. 2004 Jan;9(1):22-7.
[31] Taylor MJ, Taylor N. Health research access to personal Confidential data in England and Wales: assessing any gap in public attitude between preferable and acceptable models of consent. Life Sci Soc Policy 2014;10(1).
[32] Kaye J. The tension between data sharing and the protection of privacy in genomics research. Annu Rev Genomics Hum Genet. 2012;13:415-31. doi: 10.1146/annurev-genom-082410-101454. Epub 2012 Mar 9.
33 Xafis V. The acceptability of conducting data linkage research without obtaining consent: lay people's views and justifications. BMC Med Ethics. 2015;16(1):79. Published 2015 Nov 17. doi:10.1186/s12910-015-0070-4
34 Mählmann L, Schee Gen Halfmann S, von Wyl A, et al. Attitudes towards personal genomics and sharing of genetic data among older Swiss adults: a qualitative study. Public Health Genomics 2017;20(5):293–306.
35 Sanderson SC, Brothers KB, Mercaldo ND, et al. Public attitudes toward consent and data sharing in Biobank research: a large multi- site experimental survey in the US. Am J Hum Genet 2017;100(3):414–27.
36 Popejoy, A. B. & Fullerton, S. M. Genomics is failing on diversity. Nature 538, 161–164 (2016). AND Crider KS, Reefhuis J, Woomert A, Honein MA. Racial and ethnic disparity in participation in DNA collection at the Atlanta site of the National Birth Defects Prevention Study. Am J Epidemiol. 2006;164(8):805–812. doi:10.1093/aje/kwj264
37 Dang JH, Rodriguez EM, Luque JS, Erwin DO, Meade CD, Chen MS., Jr Engaging diverse populations about biospecimen donation for cancer research. J Commun Genet. 2014;5(4):313–327. doi:10.1007/s12687-014-0186-0
38 Wong M, Chia K, Yam W, Teodoro G, Lau K. Willingness to donate blood samples for genetic research: a survey from a community in Singapore. Clin Genet. 2004;65(1):45–51. doi:10.1111/j..2004.00192.x
39 Global Alliance for Genomics and Health. "Framework for Responsible Sharing of Genomic and Health-Related Data: Development of Policies." Paper presented at the 3rd Plenary Meeting of the Global Alliance for Genomics and Health, Leiden, The Netherlands, 2015.
40 Fisher ER, Pratt R, Esch R, et al. The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies. Mol Genet Genomic Med. 2020;8(2):e1099. doi:10.1002/mgg3.1099
41 Trustworthy governance for sharing health-related data. Centre for Biomedical Ethics https://medicine.nus.edu.sg/cbme/research/trustworthy-governance-for-sharing-health-related-data/. Accessed 5 Oct 2020.
42 Miles M, Huberman M. Qualitative data analysis: An expanded sourcebook. Thousand Oaks, CA, SAGE Publications; 2014.
43 Integrated Health Information Systems. https://www.ihis.com.sg/. Accessed 24 Sep 2020.
44 Government Technology Agency. https://www.tech.gov.sg/. Accessed 24 Sep 2020.
45 Philipps M, Knoppers BM. The discombulation of de-identification. Nat Biotech. 2016;34(11):1102–3.
46 Finck M, Pallas F. They who must not be identified—distinguishing personal from non-personal data under the GDPR. Int Data Privacy Law. 2020 10(1):11–36.
47 Ipsos-MORI. 2016. The One-Way Mirror: Public attitudes to commercial access to health data. Wellcome Trust: UK. Available at: https://www.ipsos.com/sites/default/files/publication/5200-03/sri-wellcome-trust-commercial-access-to-health-data.pdf Accessed on 31 March, 2020.
48 Xafis V. The acceptability of conducting data linkage research without obtaining consent: lay people's views and justifications. BMC Med Ethics. 2015;16(1):79. doi: 10.1186/s12910-015-0070-4.
49 McCormick N, Hamilton CB, Koehn CL, et al. Canadians’ views on the use of routinely collected data in health research: a patient- oriented cross- sectional survey. CMAJ Open 2019;7(2):E203–9.
50 Shah N, Coathup V, Teare H, et al. Motivations for data sharing- views of research participants from four European countries: a direct study. Eur J Hum Genet 2019;27(5):721–9.
51 Kim KK, Sankar P, Wilson MD, et al. Factors affecting willingness to share electronic health data among California consumers. BMC Med Ethics 2017;18:25.
52 Majumder MA, Cook-Deegan R, McGuire AL. Beyond Our Borders? Public Resistance to Global Genomic Data Sharing. PLoS Biol. 2016;14(11): e2000206.
53 Abdelhafiz AS, Sultan EA, Ziady HH et al. What Egyptians think. Knowledge, attitude, and opinions of Egyptian patients towards biobanking issues. BMC Med Ethics. 2019;20:57.
54 Walker J, Lovett R, Kukutai T, Jones C, Henry D. Indigenous health data and the path to healing. Lancet. 2017;390(10107):2022-3.
55 Cheok, J (2018) SingHealth hack 'worrying' for Singapore but govt response lauded. Available at: https://www.businesstimes.com.sg/government-economy/singhealth-hack-worrying-for-singapore-but-govt-response-lauded Accessed on 31 March, 2020; Mahmud, A.H (2019) Government accepts 5 measures to improve data security, to set up single contact for public to report breaches. Available at: https://www.channelnewsasia.com/news/singapore/government-improve-data-security-contact-public-report-breaches-12130700. Accessed on 31 March, 2020.
56 Chua BH, Murdoch U. Communitarian Ideology and Democracy in Singapore. London: Routledge; 2002.
57 Vayena E, Blasimme A. Health Research with Big Data: Time for Systemic Oversight. J Law Med Ethics. 2018;46(1):119-29.
58 Blasimme A, Vayena, E. Towards adaptive governance in big data health research: implementing regulatory principles. In Laurie G, editors. Cambridge Handbook of Health Research Regulation. Cambridge, UK: Cambridge University Press, forthcoming.
59 Ozdemir V. Innovating Governance for Planetary Health with Three Critically Informed Frames. OMICS. 2019;23(12), 623-30.
60 National Data Guardian. https://www.gov.uk/government/organisations/national-data-guardian. Accessed 5 Oct 2020.
61 Office of Privacy Commissioner (OPC) https://www.privacy.org.nz/about-us/introduction/. Accessed 5 Oct 2020
62 Data Governance Framework 2020. https://www.aihw.gov.au/getmedia/a10b8148-ef65-4c37-945a-bb3effaa96e3/AIHW-Data-Governance-Framework.pdf.aspx.
58 Ballantyne A. Adjusting the focus: A public health ethics approach to data research. Bioethics. 2019;33(3):357-66.
59 Ostrom, E. Governing the Commons. New York: Cambridge University Press; 1990.
60 Caron NR, Chongo M, Hudson M, et al. Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts. Front Public Health. 2020;8:111. Published 2020 Apr 24. doi:10.3389/fpubh.2020.00111.
61 Integrated Data Infrastructure (IDI). https://www.stats.govt.nz/integrated-data/integrated-data-infrastructure/. Accessed 24 Sep 2020.
62 Ngā Tikanga Paihere. https://data.govt.nz/use-data/data-ethics/nga-tikanga-paihere/#development. Accessed 24 Sep 2020.
63 Department of Statistics, Singapore. 2020. Education, Language Spoken and Literacy. Available at: https://www.singstat.gov.sg/find-data/search-by-theme/population/education-language-spoken-and-literacy/visualising-data Accessed on 31 March, 2020.