Hepatitis C data justice: the implications of data-driven approaches to the elimination of hepatitis C

ABSTRACT

The World Health Organization’s goal of achieving hepatitis C elimination by 2030 is inspiring the use of novel methods to find, diagnose and treat people living with the virus. Globally, rates of hepatitis C treatment uptake have declined. Data-driven public health approaches, including case finding, notification and contact tracing, are being developed and implemented to reach the elimination goal. Drawing on interviews with policymakers, lawyers, peers and others who work with people with hepatitis C, we analyse perceptions of the use of data-driven interventions to achieve elimination, and concerns about risks. While interviewees expressed some enthusiasm for data-driven interventions, they were apprehensive about the possible effects of data collection processes and systems and/or believed that people with hepatitis C were. They noted concerns about the sharing of people’s health data without active consent, and worried that data-driven approaches could perpetuate hepatitis C-related stigma and discrimination. We explore these concerns through the concept of data justice, which helps to account for complexities, risks, and challenges. We argue that data-driven interventions to increase access to treatment will be effective and beneficial only if they also address, or at least do not increase, the barriers to treatment caused by stigma, criminalisation and structural inequities faced by many people with hepatitis C. Such interventions should also be designed to mitigate the limitations of the most usual models of data collection and use.

KEYWORDS:

• Hepatitis C
• data justice
• stigma
• rights

Introduction

The use of personal health data for purposes other than those for which they were originally intended is not new. Data collected on people who have a reportable disease, for example, have been used in epidemic surveillance for decades (Declich & Carter, 1994). There are, however, novel developments occurring in the use of hepatitis C surveillance data (Katzman et al., 2019), particularly the use of these data for finding people who have not had treatment. As technology has changed to enable the more rapid linking of testing data with treatment data, new debates have emerged about the policy benefits of large-scale data linkage (e.g. Stoové et al., 2020), and its risks (Buchbinder et al., 2022). The use of data in this way may enable the identification, testing and treatment of more people, but it also raises concerns about privacy, particularly given the increasingly common incidence of accidental or malicious data breaches and leaks (Goggin et al., 2019). Such concerns are especially relevant for diseases that are stigmatised and disproportionally affect economically and socially disadvantaged people.

Hepatitis C notification data exemplify these concerns. The risks of hepatitis C data re-use are similar to those involved in the secondary use of HIV data identified by Buchbinder et al. (2022). They include the risk of increased criminalisation, as hepatitis C in Australia and many other places is spread primarily through illicit drug injecting, which is a criminalised activity (Maher & Dixon, 2017); and the risk of exacerbating existing inequities. Data systems tend to disadvantage those who are already socially marginalised, and data is used in ways that are shaped by and perpetuate inequities (Dencik et al., 2022). As we explain below, stakeholders working in the hepatitis C sector and those who have experienced hepatitis C treatment themselves are positive about the potential benefits of notifications data re-use but concerned about these risks (see, further, Katzman et al., 2019; Poll, 2013; Stoové et al., 2020; Walker et al., 2020).

Changes in treatment, and in technologies of data management, mean concerns about confidentiality and the right to privacy have emerged alongside concerns about access to treatment and the right to health. These concerns and rights carry distinct implications: on the one hand, data confidentiality must be protected in light of the risks of forced disclosure and stigma that may be activated by data re-use (in accordance with the right to privacy); on the other hand, assertive follow-up is potentially warranted to facilitate access to treatment and therefore support good health (in accordance with the right to health).

In this article, we examine interviews with stakeholders in the Australian hepatitis C sector alongside insights from critical bioethics to explore these tensions. We argue that the concept of ‘data justice’ illuminates the political dimensions of surveillance, and its potential consequences for policy goals and individual lives. In an era where the elimination of hepatitis C is a key policy goal, the social meanings of hepatitis C surveillance data remain important, despite sociotechnical imaginaries of data as impartial. Unless the political status of data is recognised, long-standing patterns of stigma and discrimination may continue to pose barriers to treatment, undermine the rights and choices of people living with hepatitis C, and continue to do harm.

Background

Hepatitis C is a blood-borne virus that affects the liver and in Australia is commonly transmitted through illicit drug injection practices. Recently, scientific developments have led to a ‘revolution’ in hepatitis C care (Martinello et al., 2018, p. 4) centred on the use of direct-acting antiviral treatments (DAAs), which can cure chronic hepatitis C in more than 95% of cases (Dore, 2021, p. 36) with minimal side-effects. The Australian government has provided unrestricted access to DAAs and, following the World Health Organization’s recommendations, has set a goal to eliminate hepatitis C as a public health threat by 2030 (Australian Department of Health, 2018). However, barriers to treatment remain, as evidenced by rates of uptake, which were initially high but have since plateaued (MacLachlan et al., 2020).

It has been suggested that the next phase of elimination in Australia will require new approaches to engage those who have not been tested or treated (Bajis et al., 2017; Biondi & Feld, 2020; Walker et al., 2020). Among these potential new approaches is the expanded re-use of surveillance data for case finding (Australian Government, 2018). Surveillance data is collected because hepatitis C is a ‘notifiable disease’, a category of disease that legally obliges health practitioners to notify public health authorities of new diagnoses. Personal information about the individual is not recorded for every notifiable disease. For example, an HIV notification is made without including the name of the person who has tested positive. This is known as a ‘de-identified notification’. For hepatitis C, in contrast, the individual must be identified by name, and the likely transmission route (e.g. ‘injecting drug use’) recorded. This is an ‘identifiable notification’. As we argue below, the status of hepatitis C as an identifiable notifiable disease has important implications for the uses (and re-use) of notification data.

The re-use of notification surveillance data is occurring in several countries. A large-scale intervention in the UK, for example, matches historic notification data with other national datasets to identify people diagnosed with hepatitis C who appear not to have been treated (Stoové et al., 2020). Policymakers and researchers are pursuing similar strategies in Australia. Research conducted in the Australian state of Victoria, for example, reviewed the barriers and facilitators to the re-use of notification data, finding that data linkage with Medicare¹ could be used to enhance the accuracy of contact tracing (Walker et al., 2020). In some Australian jurisdictions, disclosure of personal information contained in disease registries may be permitted for the purposes of disease prevention and control, follow-up and/or treatment (Walker et al., 2020).

People with hepatitis C and those who work with them, however, are concerned about the risks of these developments (e.g. Stoové et al., 2020). Hepatitis C is a highly stigmatised condition (Anti-Discrimination Board of New South Wales, 2001; Broady et al., 2018). Even without new uses of data, contact tracing risks exposing people with hepatitis C to disclosure of their status without their consent. The risks involved in the re-use of data have been demonstrated in breaches of data security and confidentiality in other contexts (Goggin et al., 2019), including recent well-known incidents. One example was an Australian government automated social security debt assessment and recovery initiative, known as ‘robodebt’, which involved the use of linked data with new technical capabilities (Carney, 2019). More recently, Australian private health insurance data were hacked and used in attempts to extort people with hepatitis C and other stigmatised conditions (Australian Associated Press, 2022). Such breaches emphasise that people with hepatitis C are especially vulnerable to the risks of data re-use.

Analytical framework: data justice

The risks and benefits of data re-use and data linkage can be productively analysed using the concept of data justice. A growing body of advocacy and research deploys this concept as a means of better understanding the potential consequences of new technologies of data generation, storage, and use (e.g. Buchbinder et al., 2022; Dencik et al., 2022; Molldrem & Smith, 2020; Smith et al., 2023). The term itself foregrounds the importance of justice to data, and the ways in which data can be used (inadvertently or by design) to perpetuate injustice.

Data justice highlights the social institutions that drive the collection and use of data. Central to data justice is the concept of personal autonomy over the collection and use of one’s own data. Advocates argue that the principle of consent to the (re-)use of data does not currently benefit all groups equally and that there is a need for strengthened protections against the possible harms the use of data collection and use can inflict on marginalised or vulnerable people. People living with hepatitis C are among those particularly vulnerable to data misuse, given its practical and symbolic association with injecting drug consumption. Potential harms include economic and social barriers to treatment, as illuminated by Molldrem and Smith (2020) in their analysis of the novel uses of HIV genetic sequencing in public health surveillance data, and the effects of these on confidentiality and consent. Such data are ostensibly always confidential, their use subject to legal and ethical standards. However, as Molldrem and Smith (2020, p. 19) point out, conventional models of consent are insufficient in this developing field. New technologies of health data demand ‘entirely new forms of consent control and shared decision-making’ to ensure that affected communities participate in decisions about data collection and use, which will in turn improve healthcare systems and opportunities for ‘greater access to better services on terms of their own choosing’ (Molldrem & Smith, 2020, p. 13).

Similarly, the hepatitis C elimination agenda is bringing about important shifts in policy and practice, generating a need for new forms of consent and new options for refusing it. On the one hand, the availability of subsidised treatment for hepatitis C represents a shift that increases respect for individuals and their right to health. On the other hand, as Seear and Lenton (2021) argue, novel methods to find and treat people for hepatitis C involve limited engagement with patients, diluting the substance of informed consent, and framing individual privacy rights as impediments to achieving elimination. As we noted above, policy conversations about the re-use of personal data are focused on options to forego consent, which is at odds with the usual principles of ethical healthcare and research but increasingly considered in contexts of data linkage (Hutchings et al., 2021). Most standards of ethics and consent assume a model of biological citizenship in which rights are automatically bestowed and equally distributed. For example, research on the experiences of marginalised people has long criticised the systemic neglect of their rights as a form of paternalism, although this is often tempered by an acceptance of paternalism as beneficial if mobilised in the interests of health and wellbeing (e.g. Parsell & Marston, 2016). Others advocate a model of consent that allows genuine choice to consent to or refuse, and for that to be extended to those presumed to lack the capacity to make choices in their own best interest. This is a model recognising that liberal ideals of equal access to the benefits of healthcare are not enacted in many cases, and that ‘informed refusal’ may be an exercise in agency and in ‘resisting and reimagining the rights, obligations, and capacities that inhere in biological citizenship’ (Benjamin, 2016, p. 971). In the context of hepatitis C treatment, informed refusal could be one response to systems of structural inequality, including in treatment and post-cure life (Kagan et al., 2023). Informed refusal could also relate to the potential re-uses of health data for treatment follow-up. Data linkage may be viewed in some policy and practice settings as uncomplicatedly benign, but is understood by people affected by long histories of stigma and forced disclosure as a threat to privacy and personal autonomy, as we discuss below.

Our arguments draw especially on three dimensions of data justice: (1) the implications of health ‘datafication’ to social justice; (2) the new meanings of consent required to accommodate the use and re-use of health data; and (3) the need for circumstances in which consent for the use of health data can be refused. Each of these are based on the recognition that data are themselves political, neither objectively produced outside politics nor impartially descriptive without politics. These dimensions of data justice, we argue, are especially relevant to the re-use of hepatitis C notification data.

Methods

The analysis in this article draws on data collected for an Australian Research Council-funded project (Seear et al., 2021) on hepatitis C and post-cure lives. The aims of this project were to better understand the legal and policy dimensions of hepatitis C-related stigma and discrimination and identify laws and policies that affect people after cure. The project comprised several stages (Kagan et al., 2023). This article examines data from 30 in-depth interviews with key stakeholders working with hepatitis C-affected communities across policy, community health, legal, advocacy and other settings in Australia. Participants were purposively selected to reflect a range of ages, genders and roles in the sector, including responsibilities for designing and/or delivering service and policy reforms. Some stakeholders self-identified as ‘peers’, meaning they had personal experience of hepatitis C or other relevant lived experience (e.g. alcohol or other drug use; incarceration). The interviews explored stakeholders’ experiences and views on the structures and approaches that shape forces of stigma and discrimination, and possible legal, policy and practice reforms to address these. The centrality of health data and use emerged in discussions of the forces that may perpetuate stigma.

The interviews were recorded, transcribed, checked for accuracy, and de-identified, with each stakeholder being assigned a participant number. The transcripts were coded using a framework based on a review of literature and a close reading of all transcripts. This framework was finalised by the lead chief investigator [KS], who reviewed the draft coding framework against a sample of transcripts and literature, with input from other team members. The analysis for this article was conducted by the first and second authors and followed the principles of inductive thematic analysis (Braun & Clarke, 2006), identifying recurrent patterns in the data and testing these through comparison with variations both within potential themes and across the whole dataset. The analysis and draft manuscripts were then reviewed and revised by each member of the writing team.

This study involves human participants and was approved by the La Trobe University Human Research Ethics Committee (HEC20481). Participants gave informed consent to participate in the study before taking part.

Analysis

Many interview participants in the study had long-standing connections with the hepatitis C sector and expressed a commitment to the rights of affected people. Some held more than one role, for example in advocacy and service delivery, and some had personal experience of living with hepatitis C. Among them, we found cautious optimism about the re-use of data, tempered by recognition of the need for privacy and confidentiality, and concerns about reproducing stigma through data re-use.

Data as a means of enhancing access to treatment

Stakeholders’ discussions of access to treatment incorporated questions of data and the social justice implications of its use. They were broadly positive about using notification data to contact people partially diagnosed, lost to follow-up and/or are unaware of new treatment, as a means to recruit these cohorts into treatment. They acknowledged concerns and the need for protections, but also expressed an obligation to provide access to treatment where possible, and balancing risks with benefits. For instance, P25 (policy, service provision) considers the re-purposing of notification data:

[Notifications] are a good thing and they can be used in a positive manner […] for example, there’s people […] that have gone into accident and emergency departments and have had their bloods run and they’ve got positive statuses sitting there and they’ve never been notified of their status. […] Why test people if you’re not going to link them into care?

Here, P25 makes an ethical argument to act on information about hepatitis C, partly because it is not ethical to know that someone has hepatitis C and not tell them, and partly because the rationale for testing is to move people into care, that is, treatment. However, these ethical arguments are complicated by the social worlds in which hepatitis C testing and treatment take place. The position that it is unethical to fail to link people to care cannot be sustained so categorically when the concept of ‘care’ is considered beyond a binary choice between treat/don’t treat, and the technologies of surveillance and notification that are part of treatment are appreciated.

A data justice lens recognises the significance of matters such as how medical records are managed in large institutions that have a history of stigma and discrimination against people with hepatitis C, how the mechanisms of communication and disclosure could facilitate unwanted disclosure, and how social and legal norms around illicit drugs might shape attitudes to data re-use. Each of these complicate calculations of risk and benefit by illuminating the circumstances and settings in which hepatitis C treatment follow up takes place.

P19, who works for an alcohol and other drug (AOD) treatment provider, describes the addition of a question on hepatitis C status to the intake database of treatment services similarly. Here, this innovation is framed as an opportunity to facilitate access to treatment, and the AOD treatment sector’s responsibility to do so:

[The intake question] signals to the sector that this is important, so this is part of your role as a drug and alcohol treatment provider to know a bit about hep C, know what the pathways might be for treatment and to ask the question ‘have you had an opportunity to be tested? If not, how can we facilitate?’ […] And so, we as a peak body thought, if you build that into a data collection system, it signals to the sector ‘this is an important part of your job’.

P19 went on, however, to acknowledge the naivety of this assumption, and recount criticism of the intake question, because of its potential consequences and the fears its inclusion would generate:

There was some feedback from people working in the hep C space, saying, ‘well, where will this data be kept? What are the implications? You know, could people withdraw treatment?’ And to be honest, I think I had some naivety around that.

One way that concerns and optimism about re-use of data were expressed was in terms of balance. Participants described the need to balance potential benefits with possible risks. Some stakeholders saw great potential for data re-use, while remaining concerned about privacy and choice, or they signalled that, in their view, public health goals and individual privacy rights were in tension. Others were concerned that in the push to use notification data to find people for treatment, public health goals (e.g. hepatitis C elimination) were being privileged over individual privacy rights, and that decisions around data use are being imposed on communities rather than reached through democratic consultation and negotiation. P7 (advocacy) said:

Clearly there are benefits and, you know, we have seen the benefits of contact tracing and data collection in the case of COVID, but there are at the same time significant impacts on issues of privacy, confidentiality and informed consent. I think that’s a discussion that needs to be a public discussion. I don’t think any government has the right to make unilateral decisions as to what is the right balance and what is the right trade-off between public good and private […] It’s appalling that governments have chosen to make unilateral decisions from basically the […] patronising perspective that they know what’s best and therefore, you know, any collateral damage is by their judgement acceptable in the context of overarching public good.

Public health surveillance relies on the use health data, and securing individual consent for collection and use is not always practicable (Dawson & Latham, 2020). Public health logics designed for epidemic surveillance tend to assume that data is socially neutral and ontologically consistent. The concerns expressed by interview participants here, however, indicate that these assumptions are not accurate for hepatitis C. In the context of hepatitis C, apparently neutral infection data is freighted with social meanings, including the association of the virus with injecting drug use, a criminalised and stigmatised practice. Such concerns align with the principles of data justice because they add new dimensions to traditional public health trade-offs between risk and benefit, such as the social meanings data carry. Some stakeholders, such as P2 (service provision), argued that concern that maintaining or preserving privacy might add complexity to epidemiological methods of linking data often outweighs concern for protecting privacy:

It just really bothers me that like it’s like, ‘Oh, my research would be harder. So, we can’t take care of your, you know, confidentiality and anonymity and your concerns or whatever’.

Stakeholders were acutely aware that public health often involves balancing individual choices and autonomy with population health but believed that the choices and autonomy of people in stigmatised and marginalised groups are often regarded as less valuable. In this balancing exercise, the scales appear to our interviewees to be unfairly weighted in the interests of public health surveillance.

Data as a mode of stigma in the context of disclosure

As more health data are held across multiple databases, information breaches are now a widespread concern. Health data on hepatitis C status poses specific risks. This was reflected in stakeholder accounts, where the risk of stigmatising consequences arising from data breaches was highlighted as a particular concern. This adds a further dimension to the ordinary concerns around privacy, security and propriety that characterise any potential re-use of health data, because where stigma and discrimination have historically been commonplace, data misuse poses higher risks of harm. As a framework, data justice insists that data are more than their utility for epidemiology. It asserts that the particularities of hepatitis C require an understanding of data as a social marker and a social apparatus.

P18 (policy) noted that because of the prevalence of stigma, people with hepatitis C may have higher levels of sensitivity than others about the re-use of their data:

I’m sure there’s some level of [concern that] ‘well, if you’ve got my name, then what else can you see?’ and how potentially someone’s record can be seen across multiple services […] — it’s a possibility of stigma.

Compounding these concerns is the status of hepatitis C as not only an identifiable notifiable disease, but one in which the route of transmission is recorded. To protect against the stigma associated with HIV or sexually transmitted infection status, names and identifying information are not recorded in surveillance data. As noted above, hepatitis C notifications are named and, as such, ‘people with hepatitis C, or with a history of injecting, experience stigma at the level of healthcare services and may reasonably conflate named notifications with experiences at the healthcare interface’ (Johnson et al., 2017, p. 2). This policy is central to stakeholders’ considerations of the use of notification data for the purposes of case finding. Some participants proposed de-identifying notifications to enable the use of the data without perpetuating risks of stigma, criminalisation or discouragement from testing or treatment. As P2 (service provision) put it:

The notifications should be anonymised or at least […] we should have a conversation about it that includes the community and, like, [justifies] the case for not having them anonymised because I […] just think that it would help with the stigma and the stress in people’s lives, and they would be able to prioritise their health over […] not being arrested all the time.

Participants reported strongly held views on the practice of notification, linking it to stigma and discrimination. For example, P17 (service provision) said:

It’s complete bollocks and it [hepatitis C] should not be notifiable on that basis [as identifiable], it’s […] a discriminatory approach.

Participants also expressed concerns about the permanence of data, and the potential that people will remain forever tied to their past hepatitis C status, including in medical records:

Unless there is an ability to expunge or redact the record, there is always going to be a risk that those individuals will be impacted for the rest of their lives on something that is no longer relevant to anybody, let alone themselves. (P7, advocacy)

[T]he world is so unpredictable […] do you really trust this and all future governments, possible future governments, with a list of the names and addresses of everyone who has […] hep C? (P2, service delivery, peer)

Importantly, stakeholders observed that data are already being mis-used, inadvertently or by design, so these concerns are far from hypothetical. For example, P4 (service provision) described a circumstance of wrongful disclosure through error:

An HIV-positive person who also had hep C had their status inadvertently provided to their family. […] It was an Aboriginal person and information was sent by contact tracers […] to their local community health service and their family worked at the local community health service. […] It would look like people’s identity and everything is all protected, but it doesn’t always work in reality.

The risk of data breaches could be reduced with changes to policy. Practical and implementable ways of doing this have already been identified, including removing the name requirement for new hepatitis C notifications, introducing a mechanism for past hepatitis C status to be removed from medical records, and developing an ‘opt in’ mechanism for personal information being used for other purposes (Seear et al., 2023).

Hepatitis C ‘datafication’

Data justice emphasises the political salience of data themselves. For our purposes here, two discussions of data justice are most salient. Dencik et al. (2022) have argued that ‘datafication’, which involves the transformation of more and more information about people’s activities and behaviours into data, is a political effect of the capitalist state. Other scholars have analysed the production and materiality of data (Ruckenstein & Schüll, 2017). Both agree that data are inherently social and political, that they materialise social ideologies and biases, reflect and perpetuate them, and create new avenues for their manifestation.

These research directions invite us to think beyond the conventional concerns with ‘balancing’ risks with benefits and calculating gains against losses when approaching the ethics of data collection and use. Our interview data indicate that stakeholders working with hepatitis C-affected communities have largely been encouraged to think in this conventional way: to seek a balance between potential benefits and risks. This orthodox framing presents the processes of designing and implementing interventions, and weighing their risks and benefits, as separate from their negative consequences. In the case of secondary uses of notification data for contact tracing, these negative effects could include a deterrence effect on testing and decreased trust in otherwise trusted service providers – effects compounded by the broader context of growing distrust in public institutions, scepticism about the benefits of official uses of data (Evans et al., 2020), and the erosion of consent (Seear & Lenton, 2021). These consequences may be recognised as unintended; however, as Parvin and Pollock argue, the concept of ‘unintended consequences’ is often used to describe consequences that could in fact have been expected, but that ‘fall outside of the purview of the specializations that conceive or implement [them]’ (Parvin & Pollock, 2020, p. 322). It ‘shuts down the conversation by assuming that capacious considerations are unproductive and unnecessary impediments to problem solving as narrowly defined’ (324). A tactic of responding to unintended effects marginalises fundamental questions about intervention design and forecloses other possibilities, including ‘what other kinds of connections, interventions, or experiments may be possible’ to prevent such effects (324).

In the context of hepatitis C, this definitional narrowness means that stigma and the harms of criminalisation connected to injecting drug use are treated as distinct from the potential uses of hepatitis C notification data. Such narrowness is at odds with the actual experiences and consequences of stigma (Fraser & Seear, 2011), and perpetuates the fiction that data is politically neutral, failing to accommodate the intertwined social and technical forces that are constitutive of data, not merely external to it. Data justice, however, demands space for people to decline those invitations to participate in treatment that might involve the collection and use of their data (Benjamin, 2016; Marsh & Kelly, 2018), affording people the autonomy and choice to make decisions for themselves, particularly in contexts where structural change is instead the most practically and ethically pressing need.

Equally, questions of trust in institutions need to recognise that institutions are not politically neutral. As Benjamin (2016, p. 979) argues in her formulation of new possibilities for social justice involving new relationships with data, trust and mistrust are not merely ‘individual or cultural predispositions, but outgrowths of social relationships that are produced through the allocation of material resources and symbolic power’. Data have been used and misused by corporations and government agencies in multiple ways, both intentionally and inadvertently. In the context of hepatitis C, data justice illuminates the distrust felt by people with hepatitis C towards these institutions and echoed by key stakeholders in the field. This distrust, coupled with the limited privacy protections afforded by legislation, may be warranted by histories of institutional failure. It needs to be recognised not as a matter of personal hesitation on the part of individuals, simply resolved through reassurance, but as a matter of the accountability of state agencies, requiring legislative and other reforms to improve relationships between institutions and vulnerable people.

Conclusion

In this article, we have argued that orthodox binaries of risk and benefit in uses of health data are complicated in the case of hepatitis C, and that this is made evident when the use of health data is considered in terms of justice. In our efforts to understand the significance of emerging public health technologies for hepatitis C notification and treatment, we find that the concept of data justice accommodates the contingency and meanings of data and the relationships between data and institutions that collect and hold them. This concept is important because, as we have argued, the re-use of hepatitis C notification data risks perpetuating stigma, and such risks cannot be mitigated by conventional measures of confidentiality and consent, or traditional protections for privacy, alone.

How then can data justice be usefully applied to the use of hepatitis C notification data for recruitment into treatment? We argue for three key principles as guidance in the first instance.

1. Data justice requires incorporation of the technical, political, and relational forces that make up data and the subjects of data (Molldrem & Smith, 2020). This would involve, for hepatitis C, the relationships and technologies that make up hepatitis C notification data, including the spaces occupied by diverse bodies, desires, risks, blood, treatments, epidemiological and genetic data, modelling and testing technologies, institutions, case finders and case managers, and multiple ethical issues, questions, and opportunities.

2. Data justice requires recognition of the inequities embedded in the systems that produce and manage data. For hepatitis C, these include the criminalisation of people who use drugs, and its associated social and economic marginalisation; and the ubiquity of stigmatising and discriminatory treatment experienced by people with hepatitis C in health and social care.

3. Data justice requires that outcomes of data-driven interventions meet the needs of the people whose data is being used. For hepatitis C, these needs may sometimes be aligned with the priorities of healthcare providers and government strategic plans or may sometimes be distinct or even contrary to those agendas. Any new policies, laws and initiatives, and any changes to existing mechanisms, must recognise and draw on the individual and collective needs and expertise of people with (a history of) hepatitis C. A fundamental requirement of new data-driven solutions to hepatitis C elimination should be to give affected people better access to services when and where they need them, but it should also ensure that other needs, including to privacy and confidentiality, are upheld.

Together these principles have implications for any considerations concerning the collection and use of hepatitis C notifications data. The introduction of non-identified hepatitis C notifications is a clear instance where policy reform could build institutional trust in the use of data, partly because this would acknowledge the reality and impact of hepatitis C-related stigma, as it is currently recognised for STIs. This reform could also serve as a step towards protecting the interests of affected communities in the (increasingly common) circumstances of accidental or criminal breaches of data security.

More broadly, changes to policy and practice focused on the justice dimensions and effects of data could also apply to the collection and use of other types of personal data, for example in legal and administrative systems (Mulcahy et al., 2023). Many people with hepatitis C are visible in the datasets of multiple systems and institutions, because they are in contact with criminal, social security, disability, health, and child protection systems; and so are more vulnerable to inequitable treatment than people who have fewer interactions with these systems. Service and system design that acknowledges the contexts in which hepatitis C and injecting drug use are stigmatised should bring about interventions that enact more ‘stigma-sensitive practice’ in the collection and use of health data (Lenton et al., 2021) and, in turn, more robust hepatitis C-related data justice.

Acknowledgements

We thank all participants for agreeing to take part in this research, and for generously offering their time and experience. We also thank the project advisory team for their support, peer reviewers, and journal editors for advice on improving earlier versions. The interviews were conducted by Emily Lenton and Dion Kagan, and were checked for accuracy by Andrew Whalley.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was supported by the Australian Research Council under Grant [DP200100941]. The views expressed are the authors’ own.

Notes

1. Medicare is a national insurance scheme in Australia that provides free or subsidised healthcare.