Community Leaders Share Concerns About Hepatitis B and the Law: New Publication Presents an Early Consensus on Priority Legal Issues
Hepatitis B is Australia’s most prevalent blood-borne virus, with nearly 220,000 people estimated to be living with chronic infection. In a recent report called ‘If Hepatitis was 100 People’, Hepatitis Australia spotlit the radical diversity of this population. It includes a high concentration of people who were born overseas (about 70%), typically in parts of the world with higher hepatitis B prevalence or where vaccination programs have historically been limited. Many of these people (about 56%) speak languages in addition to English in their homes. Around 7% are Aboriginal and Torres Strait Islander people, 4% are men who have sex with men, and 3% percent are people who inject drugs.
‘If Hepatitis was 100 People’ is an illuminating report, vividly showcasing the tremendous heterogeneity of the hepatitis B-affected population.
The report also includes some concerning findings about access to hepatitis B care. Drawing on recent epidemiological evidence, it states that more than half of all people living with hepatitis B in Australia are not receiving the essential liver and viral load monitoring they need – key monitoring that determines if and when they should receive antiviral treatment.
Globally, the lived experience of hepatitis B is also associated with significant psychosocial impacts: anxiety, financial instability, stigma, discrimination and social marginalisation. Locally, it particularly affects communities that already experience elevated financial and social stress, obstacles to accessing health care and legal problems.
Understanding more about these legal problems is one of Health+Law’s core aims. What is the role of law in the lived experience of hepatitis B? And how does law stand in the way of healthcare access, making existing obstacles worse? When and how is the law enabling, and how can that positive impact be leveraged further? Research on other health conditions, including other blood-borne viruses like HIV and hepatitis C, has shown the huge power of law as a driver of both positive and negative health outcomes. But when it comes to hepatitis B, there is very little evidence in this area. Our recent report, ‘Hepatitis B and the Law in Australia’ made some inroads by mapping the appearance of hepatitis B in formal legal processes or disputes. More comprehensively, the forthcoming results of our national legal needs study (LeNS), reports on how people living with hepatitis B experience and respond to the law in everyday life.
Another question for us has been the experience of people who work with hepatitis B-affected communities – peers, organisation leaders, clinical and organisation staff and volunteers. What are their perspectives on hepatitis B and the law?
A Collective Deliberation of Community Leaders
In 2023, we published findings on the perspectives of members of the sexually transmitted diseases (STI) and blood-borne virus (BBV) clinical workforce on the legal needs affecting their clients from priority populations. Also at that time, we assembled leaders of hepatitis-related community organisations from around Australia to pursue this line of inquiry with them. This was early in our research process, and our aim at that point was to gain a collective sense of what key leaders and stakeholders working with hepatitis B-affected people and communities saw as the most impactful and urgent areas of legal concern. Health+Law’s chief investigators met with ten people from across national organisations for a type of roundtable, consensus-building discussion of the topic. The results of that process supported and guided the design of the LeNS, and particularly its processes for participant recruitment. A complete report of that deliberation process is now available as an article in the Journal of Bioethical Inquiry.
The consensus process was designed following the nominal group technique, which parallels a Delphi process in its aim to generate new information about a topic through participant-led contributions and group prioritisation of material. Our ten participants were peers and/or professional staff with leadership roles in state, territory and national not-for-profit, community-based organisations that represent and support people living with hepatitis B in Australia.
They were asked to consider a number of questions, including:
What are the main legal issues facing people living with hepatitis B? What are the impacts of these?
How willing are people living with hepatitis B to seek assistance for legal issues? What resources already exist in the sector to respond to these?
What are the most urgent priority areas for research, law reform and policy action to address the legal needs of people living with hepatitis B?
While the facilitators from our team are people with legal expertise, most of these participants are not legal experts, which enabled them to describe legal issues experienced by people in the communities they represent through the prisms of their own experience and ideas.
When the group was ready, a polling process was conducted, in which each participant asked to vote on:
Which legal issue/s have the greatest impact on individuals, and
Which were the highest priority areas.
After further discussion and deliberation, votes were tallied, and a ranking of issues was calculated. All of this information was used as data to inform our article reporting on these results, which was drafted with input and review from the sector leaders who participated in the deliberation.
A Shortlist of Key Legal Issues
These are the top five and most pressing legal issues that emerged from the consensus process. The deliberators were concerned about hepatitis B-affected people’s
Unawareness of their rights when asked to disclose their BBV status to healthcare professionals.
Unawareness of their rights relating to testing, including concerns about whether there is informed consent for (diagnostic) testing among people migrating to Australia during visa processes.
Rights and freedoms when they are subject to public health powers and orders, including the extent of powers that can be granted to authorised officers (and concerns about the increase in people who can exercise such powers since Covid-19).
Requirements to disclose BBV status to potential employers in pre-employment medical screening.
Health data privacy, and whether it might be subject to indirect or unintended police access.
These issues occur at the interface of multiple areas of law, including privacy and disclosure, migration law, public health powers, and discrimination law. Given the high proportion of migrants and recent arrivals among the hepatitis B-affected population in Australia, it is perhaps unsurprising that migration-related legal issues were a priority among the deliberators.
A theme linking these concerns is that legal problems may often emerge from affected people’s lack of understanding of their rights – including rights to privacy, autonomy, and control of their personal health information. An aspect of this, as participants in the discussion pointed out, is the assumption among some people living with chronic infection that healthcare workers are ‘very authoritative figures’ and are ‘always right’. When people living with hepatitis B are migrants or non-citizens who don’t speak English as their first language, this can complicate dynamics further. As one participant said, ‘a lot of times things are misunderstood but [hepatitis B-affected people can] just nod […] but don’t really understand what is being said.’
It is also unsurprising to see stigma and discrimination emerge from this conversation, as these feature consistently in the personal stories of people living with hepatis B (and hepatitis C) and in social research on the condition – although, once again, their relationship with the law remains relatively uncharted.
While there are limitations to the findings derived from conversations among stakeholders, there are also many ways in which these conversations are fruitful. For one, the results of this deliberative discussion were informative for shaping the content of in-depth interviews we conducted, as well as the design of the LeNS survey, the first-ever national legal needs survey with a focus on the legal experiences of people living with hepatitis B (and HIV) in Australia. LeNS delved more deeply into the experiences and life narratives of individuals, fleshing out legal issues from their own perspectives and in more detail. Many of these narratives paint a stark picture of intense legal need. These stories will be shared soon, in our national reports.
To read more about these priority areas in the meantime from stakeholder perspectives, including some discussion of their occurrence and implications, access our new article on the deliberative process here.
Citation: David J. Carter, Anthea Vogl, Dion Kagan, Daniel Storer, Hamish Robertson and Elsher Lawson-Boyd (2025), ‘The Legal Landscape for People Living with Chronic Hepatitis B in Australia: A Consensus-Based View of Priority Justiciable Issues from Sector Leaders’, The Journal of Bioethical Inquiry (2025) https://doi.org/10.1007/s11673-025-10487-8