Outbreaks of infectious diseases can cause significant and costly health and social problems. Two new technologies – pathogen whole genome sequencing (WGS; pathogenomics) and ‘Big Data’ analytics – could greatly enhance communicable disease control. The benefits of earlier outbreak detection and response are significant. More expedient and specific interventions can limit the health and socioeconomic impacts of infectious diseases, but surveillance has political, personal and ethical implications. This project was initiated because of concerns about the potential implications for people’s privacy of using WGS technologies to characterise the relationship between isolates taken from patients.
Decisions, about what data should be collected and what action thresholds are used, are not just matters for experts. To secure social licence, these systems must align with community values; this can be facilitated by structured public dialogue to develop ethically and legally defensible justification for their design and operation. Research suggests that while the public tacitly accepts public health surveillance, they are less consistently convinced of the benefits of the secondary use of data for medical research. Our aim was to ascertain, by means of community juries, the conditions under which a well-informed citizenry would or would not accept integration of pathogen WGS and Big Data analytics into communicable disease control, and why.
Community juries are a lot like juries in a court room. They are made up of about a dozen people, who meet over two days. They hear expert testimony and then deliberate to make a decision about what they think is the right thing to do. The Community Jury process is an effective way to involve citizens in developing a thoughtful, well-informed solution to a public problem or issue. On the final day of their moderated hearings, the members of the Community Jury vote on the issues and present their recommendations to the public.
Who was in the Community Juries
We held four separate juries in Western Sydney, Wollongong, Tamworth and Eastern Sydney (all in NSW) between September 2018 and March in 2019.
Fifty members of the public were recruited by an independent professional research company. Juries were comprised of community members of a range of ages from diverse social and cultural backgrounds.
A community jury is group of people (usually 12-15 individuals) brought together over a weekend to hear evidence about an issue from experts, ask them questions, discuss and deliberate as a group, and decide upon a set of recommendations. Community juries have been used around the world to engage members of the public in a structured dialogue with experts about how we should seek to resolve difficult or controversial issues.
The Questions put to the Juries
How should health systems use genomic information about infectious diseases?
Pathogen whole genome sequencing is currently used in the health system. But it is only used to investigate outbreaks of infectious diseases that pose a grave danger to human health. Some scientists and doctors want to use WGS in other ways, to allow them to do research, or to conduct ongoing surveillance that would allow them to respond more quickly to outbreaks (and so reduce the numbers and severity of cases).
Given the evidence presented to you on the potential benefits and harms of using whole genome sequencing in different ways, please choose one of the following options:
- 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 health
- Add research to the 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.
- Add research and surveillance to the status quo, combining sequencing information with other types of information: Allow Aand 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.
The Experts and the Evidence Presented to the Juries
Talk #1 Professor Antoine van Oijen
Antoine van Oijen trained as a physicist. A growing fascination for biology resulted in him moving to the USA and establishing a research group at Harvard Medical School. Subsequently, he was appointed as full professor at Groningen University in the Netherlands where he established a thriving biophysics research program focused on the development of single-molecule visualization techniques and their applications in basic and applied science. Recently, he moved to the University of Wollongong and was awarded a prestigious Laureate Fellowship by the Australian Research Council to further develop biophysical approaches to visualize the molecular processes that define life.
To view Antoine’s presentation please hit this link
Talk #2 Dr Jeremy McAnulty
Dr Jeremy McAnulty is a public health physician and Director of Health Protection NSW, overseeing the public health aspects of communicable disease control and environmental health. Formerly he has been Director of the Communicable Diseases Branch, Director of the Southern Sydney Public Health Unit, and HIV epidemiologist with Oregon Health Division.
Jeremy has a Master of Public Health, and trained with NSW Health’s public health training scheme, and the US CDC’s Epidemic Intelligence Service. He has led and published on a range of public health investigations and responses.
To view Jeremy’s presentation please hit this link
Talk #3 Professors Lyn Gilbert & Vitali Sintchenko
Professor Lyn Gilbert is an infectious diseases physician and clinical microbiologist who was director of laboratory services at the Centre for Infectious Diseases and Microbiology (CIDM), ICPMR, from 1991 to 2010.
Lyn is a clinical professor at the University of Sydney, senior researcher in the Marie Bashir Institute and research associate at Sydney Health Ethics in the School of Public Health at the University of Sydney. Her research has previously focused on microbial epidemiology, prevention and control of many types of communicable diseases including healthcare-associated infections.
Professor Vitali Sintchenko, director of Centre for Infectious Diseases and Microbiology – Public Health (CIDM-PH) is an academic pathologist/clinical microbiologist with a long-standing interest in the public health microbiology, biosurveillance, molecular diagnostics and epidemiology of pathogens with epidemic potential as well as infectious disease informatics.
Vitali is a professor, Sydney Medical School, The University of Sydney; supervising pathologist, NSW Mycobacterium Reference Laboratory, Centre for Infectious Diseases and Microbiology Laboratory Services, Pathology West, Westmead Hospital; and chair of the Public Health Laboratory Network of Australia.
To view Lyn and Vitali’s presentation please hit this link
Talk #4 Dr Trent Yarwood
Dr Trent Yarwood is an infectious diseases physician, based in Far North Queensland. He is a staff specialist at Cairns Hospital and Cairns Sexual Health and is the director of the Queensland Statewide Antimicrobial Stewardship Program. He has previously worked for the national Antimicrobial Use and Resistance (AURA) project of the Commission for Safety and Quality in Healthcare.
Trent is a senior lecturer in the University of Queensland’s Rural Clinical School and James Cook University’s College of Medicine and Dentistry, and a senior health policy advisor for Future Wise, a non-government organisation focusing on health, technology and education.
To view Trent’s presentation please hit this link
Talk #5 – Professor Annette Braunack-Mayer
Professor Annette Braunack-Mayer is the Head of the School of Health and Society at the University of Wollongong. She is an empirical bioethicist and Presiding Member of the Ethics Health Advisory Council for SA Health.
Annette is passionate about ensuring that the experiences and views of members of communities contribute to health services, policies and systems. Her current research spans vaccination policy and programs, the appropriate use of big data, research on the place of privacy and confidentiality in medicine and public health, obesity prevention, and chronic disease prevention in Aboriginal and Torres Strait Islander communities.
To view Annette’s presentation please hit this link