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Table 3 The final verdicts of the juries

From: Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries

Western Sydney (n = 9)Wollongong (n = 14)Tamworth (n = 14)Eastern Sydney (n = 11)
Option A. - Remain with the status quo: only allow whole genome sequencing on samples taken from patients in the health system, to investigate outbreaks of infectious diseases when there is an obvious threat to public health0010
Option B. - Add research status quo: Allow A. In addition, when pathology laboratories conduct whole genome sequencing of any sample taken from a patient, allow the results to be stored in a collection, without any identifying information about the person attached. Allow these stored samples to be used for public health or microbiological research only. Researchers would have to get approval from a research ethics committee to do research using the samples. However, the individual patients that the samples came from would not be asked to give consent for each study.0457
Option C. Add research and surveillance to the status quo, combining sequencing information with other types of information: Allow A and B. In addition, allow linkage of data from whole genome sequencing with other types of data such as clinical data about a person’s illness and treatment, social media data, data about their age, location and occupation. This linked data would be used routinely for public health surveillance (to detect outbreaks as they emerge) as well as for public health research. The linking of data and protection of privacy would be managed by specialist organisations and overseen by research ethics committees.91084