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Raising some pointed questions about research, ethics and the law

Research ethics and research misconduct, Indigenous Data Sovereignty, socioecological justice, and harmful treatments were among wide-ranging topics up for discussion at the recent Australasian Association of Bioethics and Health Law 2022 Conference in nipaluna/Hobart.

Dr Rebekah McWhirter, Senior Lecturer in Health Ethics Law and Professionalism at Deakin University, was co-chair of the conference, together with Dr Lisa Eckstein from the University of Tasmania, and also put in some serious tweeting effort at Croakey’s rotated Twitter account, @WePublicHealth.

See her detailed summary of the conference discussions below, as well as some reflections on how the organisers prioritised COVID safety for participants.


Rebekah McWhirter tweets:

Tweeting this morning from the opening session of #AABHL2022, coming to you from muwinina country here in nipaluna/Hobart, right by the sparkling River Derwent.

After a beautiful welcome to Country from Alison Overeem, the conference was officially opened by Lt-Gov Alan Blow AO.

Up first is @EdwardSDove – Dr Ted Dove, Reader In Health Law And Regulation At The School Of Law, University Of Edinburgh, asking whether research ethics committees are still fit for purpose?

Fantastic opening plenary on the changes needed to optimise ethics committees, Dove notes that HRECs are regulators, contributing to protecting participants within a complex system. They’ve evolved from modest origins in the 1950s to provide ethical scrutiny of research to protect interests, minimise harm and promote socially valuable research.

HRECs are criticised for red tape/tick box approach to ethics; overly risk-averse (preventing valuable research); trying to achieve too many (conflicting) aims; regulatory gaps; limited ability to monitor research post-approval; over reliance on consent; lack of consistency.

Argues that ethics committees are still largely fit for purpose – not perfect but the least bad option.

Despite black box nature of HRECs, they are surprisingly homogeneous in approach.

Committee members see themselves as stewards encouraging/supporting ethical and robust research – not gatekeepers but rather aligned with other stakeholders. There’s room for more flexibility in the system. Despite challenges, inconsistencies, members enjoy their role.

Issues with high turnover of members, inadequate recognition, threatening sustainability. Difficulties in combining roles in ethics, science and law/governance. Ethics committees are not well suited to all three (should focus on ethics).

Rather than trying to replace RECs, need to embed a culture of ethical research across the lifecycle of project. More resources needed, and possibly professionalising/paying members. Accreditation systems to ensure competence/consistency. Separating ethics and governance key.

Dove calls for more joined-upness, so committees can benefit from each other’s expertise and experience. This will also promote recognition of review by other committees, avoiding duplication.

Regulatory apparatus for animal ethics superior (on the face of it) to that for human research – more rigorously regulated and monitored. Benefits (and challenges) to moving to a system more like that.

• Also see this Twitter thread by Cynthia Forlini summarising his talk.

Wide-ranging

Sam Boyle now explaining how health issues can increase risk of youth reoffending, and also nurse interventions can reduce offending as well as leading to improvements across domains like housing, connectedness etc.

Imogen Goold looking at best interest decisions on behalf of children (eg infants like Charlie Gard and also Gillick competent kids refusing treatment).

Court has wide jurisdiction, engaged as soon as welfare is affected. Court frames it as if it is possible to come to one right answer – “best interests” – but really based on values. Need courts to understand this and for a harm threshold to be introduced before involving courts.

Linda Sheehan highlights need for organisational ethics – getting institutions accountable for decisions, eg ‘wise’ drug use/access. Tendency to just approve high cost drugs because of challenges in dealing with value judgments/proportionality.

Simone Henriksen identifies challenges in monitoring and enforcement with alcohol and drug treatment national quality framework, esp with differences across jurisdictions and links with funding.

Mikey Dunn now breaking down the way we integrate empirical and normative work in bioethics – ie how do we join descriptive activity with prescriptive claims? A lot of the difficulty comes from confusion around terms and muddying of boundaries. Eg empirical work is never merely descriptive, it’s always informed by values and normative claims. The real difference lies in mode of justification. We need to integrate because “the real world matters” – fundamental connection to practice.

Thin integration: identifying ethical issues (ready for normative answers); providing data for norm arguments (fleshing out normative process with real world info); or using empirical evidence to evaluate ethical interventions (moving from norm to emp).

Can we get more out of empirical approaches to improve ethical arts? Thick integration: more directly shaping norm arrangements with reference to people’s views/values (but is-ought problem arises!). Justifications for thick integration are contested. Most useful for policy-relevant guidance.

Consumer law

Joel Grieger is analysing the relationship between consumer law and negligence, using the recent pelvic mesh controversy as a case study.

Manufacturers aware of the likelihood of complications from use of the device but failed to disclose these risks to patients for commercial reasons. Patients succeeded on both common law and statutory bases.

What relevance does consumer law (misleading and deceptive conduct, fitness for purpose, acceptable quality etc) have to medical law, when negligence is available?

Wider range of remedies available under consumer law – penalties, compensation, conduct orders and more, as well as used when negligence not available, Hence being used increasingly either alone or in addition to negligence claims.

Bridget Pratt is sharing her conception of socioecological justice and applying it to just healthcare systems. Social injustices and ecological injustices often closely intertwined, eg climate change worsening poverty and widening health inequities.

Another example: NHS produces more CO2 emissions than all aircraft leaving from Heathrow, in addition to producing huge amounts of waste (inc toxic) and other environmental impacts. So may be trying to improve health, but neg effect on environment. What should we do about this?

Theories of social justice, environmental justice, and ecological justice are very separate and don’t talk to each other. Need better integration as well as inclusion of Global South and marginalised pops. Pratt provides principles for guiding health system design to promote different…forms of justice (social, ecological, enviro) without exacerbating inequities, across five dimensions: power, recognition, harmony, inclusion and wellbeing, with a focus on relationships between humans and nature.

Complexities of consent

Professor Dominique E. Martin from Deakin University – @DrDEMartin – is now explaining the ethical and legal complexities with consent when undertaking research with potential deceased donors of organs for transplantation (eg research to improve success rates, survival rates etc but also research on braindead individuals not possible otherwise).

Tricky for HRECs/clinician researchers/people making consent decisions. Who can legally provide consent? Not clear. In some cases, possibly no one. How should they make these decisions? Substituted judgment approach – good if you know wishes of deceased person.

If wishes not known, perhaps best interests approach is useful: risks v benefits for dying/dead person or their family (esp where genomic research is involved, or grieving processes are delayed). Can also consider interests of the public – benefits and risks.

Also concerns around voluntariness and potential vulnerability of decision-makers at this sensitive time, and how specific/informed consent needs to be. Key here is that donor/research participant roles are blurry here, making ethical analysis difficult.

@DrDEMartin recommends legal reform and development of ethical guidance that recognises the transition in status (alive to dead), and implications of relationality.

Sexy and dangerous

Kavisha Shah explaining that data is both sexy and dangerous! Useful for many things, including practice analytics to inform quality improvement. Notes that many see data collection in governance as divorced from healthcare improvement, but argues for important role in ethical d-m.

Dr Lisa Eckstein – @lisa_xstein – asks who’s responsible for ethical oversight once research starts?

Data monitoring committees play a key role in clinical trials, and can recommend a trial stops, be modified, or continue, based on confidential data.

Huge power equals high ethical stakes; eg when intervention arm is associated with increased adverse events – a data monitoring committee (DMC) can choose to end trial on safety grounds even if some indication that the intervention is effective. But how do they make these difficult decisions?

Guidance often include value-laden terms like ‘beyond reasonable doubt’, other guidance less helpful – her project is working on rectifying this gap.

Lisa Fry explains the difficulty in ethical approval processes for conducting multisite research in regional and rural areas, and suggests possible solutions in collaboration with stakeholders.

Health law

Often self-deprecating, sometimes witty and always wise: Professor Cameron Stewart is taking us through what modern Australian health law is and what it’s for. He starts, as you do, with Ancient Greek mythology: daughters of Themis (Dike/justice, Eumonia/good laws, Eirene/peace).

(Western) Traditionally, law’s primary task was seen to be to bring forth excellent behaviours in citizens that enhanced human flourishing. Ethics and law are interdependent and law has to maintain an ethical core to both maintain its legitimacy. But now?

Law today is merely an instrument to achieve some outcome – doesn’t have ethical objective/content. Possibly morally neutral. Laws are either: prohibitive, mandatory, or permissive. They impact: people as subjects, objects/property, relationships between subjects, or environment.

Ok, but how do we do it well? Where do we talk about the good/better/excellent in laws?

We discuss this prior to law reform, in interpreting the law, and within the bureaucratic administrative state (application/experts/guidelines).

The benefits? Increasing freedom from overbearing moral/religious claims; technical competence leading to more rational outcomes. Weaknesses? Fragile public discourse; rejection of expertise. Do we want more virtue/morality in law? Whose vision of virtue?

The forms of law are ethically neutral; their purposes are not & their implementation in the bureaucratic-admin state is not. Ethics must take precedence in the decision-making BUT perhaps greater quasi-legal values also need to be adopted for transparency/accountability/review.

Loving data

A glorious and sparkly day 2 of #AAABHL2022 kicking off with Dr Kalinda Griffiths –  @Klick22 – sharing her deep and abiding love for data, and how she thinks it can be better used for advocating for positive change, especially for advancing Aboriginal and Torres Strait Islander health.

She notes the importance of data in Aboriginal identity and recognition in a human rights context. Identification of Indigenous peoples is key to data collection, incl official stats. How are Indigenous people counted? By whom? What is the quality of data used for reporting?

Definitions of Indigeneity and operationalisation of definitions represent ongoing challenges in tracking health, compounded by the ongoing impacts of colonisation.

UNDRIP: right to recognition of identity inherent in right to self-determination. This can be in tension with coloniser-recognised forms of identity. Efforts to address this have been patchy, leading to inconsistencies.

Data matter – it has power because it tells us who needs what, where; data can support protection of human rights. Who has control of data matters – Indigenous data collection needs to be Indigenous-led to address power disparities, but need support – all hands on deck.

Indigenous Data Sovereignty – rights and interests of Indigenous peoples over their data, achieved in practice through data governance. Must be driven by Indigenous people, but can be supported by non-indigenous people in giving effect to data governance.

Workforce is a critical component here: need to develop the next generation of Indigenous data nerds! Need close collaboration with communities. Need to monitor progress closely to effectively direct resources, with improved reporting obligations. Reporting needs to reflect…Indigenous ways on knowing and doing to avoid repeating mistakes of the past.

Getting experimental

Bioethicist Assistant Professor G. Owen Schaefer – @G_Owen_Schaefer – is talking about Monitored Emergency Use of Unregistered and Experimental Interventions (MEURI) – started with Ebola and recently adapted to COVID.

The idea is to give an ethical framework for deploying beneficial but unproven treatments.

Justifications: public health emergency, absence of proven interventions etc but needs oversight to monitor for safety and efficacy.

Positioned as ‘non-research’ – eg excludes clinical trials etc from definition, and it is justified on the basis that research is not feasible.

This means MEURI can avoid burdensome regulation (replaces research ethics framework) and get benefits out faster. BUT if it looks like a duck, quacks like a duck…?

Owen argues that six features indicate it is really research (in disguise?)

These features are: motivation (knowledge to improve healthcare); protocol (just like research); approval process (ethics committee approval recommended); monitoring (must contribute to generation of evidence); self-analysis (aware that MEURI ‘similar’ to research); applications.

Research papers describe ‘single arm MEURI study design’ – so seem to be thinking of it as not-RCT, rather than not-research. Owen argues we should just stop pretending, and start treating MEURI as research (which it really is).

Misconduct

Naomi Holbeach now exploring who is responsible for published studies with falsified data. Different stakeholders have different priorities in this field and what they are interested in enforcing.

CLUE recommendations ask for better communication between institutions and journals.

Research misconduct is an increasing problem (exact extent is contested). Consequences are extremely costly, and harmful to patients/wider public, as well as undermining public trust.

COPE guidelines include clear actions for journals but not always obvious what ‘clear evidence’ of research misconduct/unreliable data is in practice. Tricky for smaller journals to implement. There is no legal obligation for journals to ensure accuracy of info published. By contrast, US has tort of negligent publication.

Most actions, however, have been unsuccessful. Other options: misleading and deceptive conduct, employment contracts, fraud, professional regulations (eg AHPRA and Code of Conduct). Restoring confidence relies on all stakeholders.

Machine learning

Joshua Hatherley and Robert Sparrow argue that adaptive machine learning systems in medicine raise more ethical issues than has previously been recognised. While they promise benefits of ongoing performance updates and site/patient specific tuning.

These strong incentives are balanced by algorithmic biases/erroneous associations. There are more concerns though. Costs of federated learning make eliminating synchronic variation challenging. This makes it hard to interpret algorithmic outputs, to get meaningful informed…consent, may lead to significant variation in quality of care between sites, and lead to disproportionate costs for some patients.

Dr Cynthia Forlini – @cynforlini – up now to critically appraise her very own field: ethics of cognitive enhancement. The field started on the assumption that it would be a big problem, be really prevalent, and that cognitive enhancement works. Doesn’t seem to have panned out that way.

The successes: identified limits of acceptability (restoring ok, enhancing not ok); contention among stakeholders; identified key ethical issues. Blind spots: lack of diversity; lack of regulatory options; no idea who is/should be responsible. So what should we do?

Data collected in an anticipatory fashion (expecting a problem) – is it time to hit pause? Critically assess early claims/assumptions; plan sensibly for the future.

Ian Stevens presenting his masters research in the ethical examination of non-validated closed-loop deep-brain stimulation treatments in psychiatric surgery. Part of the problem is working out what the methodology is underpinning dual-role non-validated trials.

Taryn Knox asking should health professionals use BMI in the clinical setting? Some reasons to be wary: relationship between high BMI and poor health not as strong/clear as we assume, esp once accounting for weight stigma, weight cycling, diet, fitness etc. BMI can give a misleading picture. Using BMI may be an instance of weight stigma – this contributes to worsening health, and doesn’t inspire weight loss. Need to consider other factors/approaches.

Libby Massey telling us now about her work with Anindilyakwa families on Groote Eylandt around Machado Joseph disease. This autosomal dominant neurodegenerative disease is incurable and enriched in the GE community. Genetic counselling and repro options are challenging to do….well.

Important to understand community understanding of disability, health literacy, family and kinship, esp in the context of the shame and stigma surrounding MJD, and guilt for passing on the gene. Libby has used qual methods to explore understandings/attitudes towards medically assisted reproduction in this context.

Her work aims to integrate cultural and worldview issues in the development of information to help decision making. Existing lit has heavy Anglo/Euro bias. Her work will improve the ability of Aboriginal families to make informed reproductive choices, and contribute to capacity building of Aboriginal researchers.

Ryan Friets critically examines the claim that autonomy is the justification for intervening when clinicians suspect that a patient is being unduly influenced, esp as they respond differently in different circumstances, and seems to come closer to a best interests motivation.

Mark Howard shares stakeholder perspectives (neurologists and people living with epilepsy) on the use of machine-learning-based clinical decision support tools for guiding treatment decisions, identifying ethical, legal, trust issues; human aspect/expertise; attitude to MLCDs.

Julia Duffy considers the interdependence and indivisibility of human right in the Convention on the Rights of Persons with Disabilities, and argues that this has actually led to the continued privileging of civil and political rights over economic, social and cultural rights, contrary to the meaning of the principle. One consequence is that it’s used to justify subordination of the right to access to adequate healthcare, disproportionately disadvantaging people with disability.

Voluntary assisted dying

Robert Ray talking about organ donation following voluntary assisted dying (VAD). Currently experiencing a post-COVID decrease in donors. VAD now legislated in all Australian states, and a small number of people undergoing VAD eligible for organ donation.

Donation after VAD currently practised overseas (200+ since first Belgian case), and outcomes are similar to standard practice (safe). Benefits: increases available organs, respects patient autonomy, respect and uphold choices/values/beliefs.

Challenges: consent (need to avoid conflict of interest), eligibility (tests can be complicated by underlying disease/stage of dying), experience (has implications for place/timing of death), impact on public trust. While ethically complex, can be managed with appropriate care.

Dr Eliana Close – @ElianaClose – reporting findings of a qual study into institutional objections to medical assistance in dying in Canada. The impact on patients/HPs by institutions who made them engage in MAID processes elsewhere so as not to be on institutional premises can be significant.

Dr Ronli Sifris – @RonliSifris – sharing her work on the spectrum of attitudes of health professionals on VAD: supportive +/- participation; pragmatic opposition (conscientious objection but won’t obstruct); opposed (won’t have anything to do with it, but may/may not work in partic institution).

Madeleine Archer has mapped all the sources of regulation operating in the Belgian assisted dying regime: complex system with wide range of regulatory actors and tools influencing practice.

Aurelie Copin explains the implications of conscientious objection for administration of VAD in Aus: some variation between state legislation (eg in obligation to refer).

Tessa Holzman considers the power of endings in understanding attitudes to VAD, and how a good (or bad) ending can be hugely influential in determining how we feel overall, regardless of what came before.

Theory and practice

On the final day of #AABHL2022 here on unceded muwinina land, we are starting with Assistant Professor Holly Fernandez Lynch – @HollyLynchez – talking about the theory and practice of precedent in research ethics committee review.

She’s drawing on her work with the AEREO consortium, which aims to develop ways to evaluate how well RECs are working. In the US, as in Aus, research ethics review is done at the local level, leading to lots of duplication and inconsistencies so there’s been a move to single committee review.

Typical complaints about RECs include: inefficiency, redundancy, bureaucracy (tick box reg rather than ethical analysis), mission creep, inadequate expertise, conservatism, failure to justify decisions etc. Could REC precedent be a (partial) answer to these problems?

Documenting reasons to inform future decisions and help other RECs.

RECs apply standards (rather than rules) so there may be multiple ‘right’ (or reasonable) answers. So some inconsistencies are inevitable. Holly argues that this is ok as long as conditions are met: eg deliberation by appropriate experts; giving reasons etc. Analogous to judicial decision-making – reasonable judges may differ, but they look to previous cases to guide their reasoning to improve consistency, and provide reasons for others in turn. This approach avoids arbitrariness, improves decision quality, clarifies standards, and promotes consistency.

Sounds great! Why haven’t we adopted precedent already? Challenging to implement – RECs don’t publish decisions, fear criticism, there is no searchable database. Concern about being bound by previous decisions, and the time required for provision of reasons.

RECs often engage in informal use of precedent (‘remember that case when we…’) but needs systematising to work optimally. Holly advocates for all REC decisions to provide clear reasons in writing that can be indexed in a searchable database, but notes practical issues.

Provides early example (by Martin Tolich and @EmTumilty) in Aotearoa/NZ, and an AEREO pilot. Illustrates the difficulty in working out what info should go in the database (how much detail req’d to be useful).

Three models: case note (way too labour intensive); headnote (inconsistent in practice and time consuming); Q&A model (structured RedCAP survey – still inconsistent though). Theory easier than practice! Now working on a prospective model for ‘institutional memory bank’ that addresses some of the identified limitations.

Governance matters

Colin Thomson notes the lack of any mechanism in Australia to hold HRECs to account. NHMRC was, in the past, more active in guiding/training but that has petered off. Consistency sought through standardised forms, ie NEAF and HREA (with mixed success). Also notes the issues with implementation of national mutual acceptance of ethical review in preventing duplication/inconsistencies.

A key source of inconsistency is HRECs going rogue and adopting policies that constrain their decision making (not in line with the National Statement).

Ingrid Winship observes that precedent is intuitively appealing to lawyers, but much less so to medical practitioners – seems in tension with evidence based practice. Notes that gaining and retaining public trust is key, and this is the key motivation in improving REC decision-making. Highlights the challenge of confidentiality to a system of precedent – where should the line between sharing of information for improving decisions, and maintaining confidentiality (for HREC members, researchers/applicants, sponsors and others).

Jeremy Kenner points out that consistency is not universally agreed upon as something to aim for, and highlights difference between procedural and substantive consistency. Asks whether ethical reflection and law are similar enough that it’s useful to model one on the other?

Asks what role could the NHMRC play in dealing with these issues? Indicates that NHMRC doesn’t have the resources/time to drive any change, but not obvious who else can step in.

@HollyLynchez emphasises that we don’t want consistency for its own sake – don’t follow bad precedent; precedent is there to help when a REC is faced with an issue they don’t know how to resolve.

Professor Mark Taylor – @DrMJTaylor – raising the critical, and tricky, issue of how to protect our collective interests in privacy, and how the law can be used to protect group privacy. He’s promoting data governance to enable good use of data for health research (and prevent bad uses!).

When thinking about a public interest test for use of data, we need to expect, accept and respect (public expectations/preferences). Can we extend this from the individual to the collective context? Information flows are important, but unreg use can cause harm rather than empowering communities (esp those already marginalised).

We can better protect collective interest in data through ‘fair processing’, privacy impact assessments considering social harm, extending common law duty of confidentiality, and setting up data institutions to respect group privacy and enable greater community control (eg alignment with Indigenous data sovereignty principles, among others).

Current effort re trustworthiness and social licence or minimum regulatory compliance inadequate to deal with this issue alone.

We need to move to new legal protections, so it is not legally permissible to cause harms to groups, while also facilitating beneficial, equitable data use for research.

Tess Whitton – @tesswhitton – highlighting the work of Indigenous researchers in culturally adaptive governance, especially Luke Burchill, and its critical role in mainstream governance questions. She uses a definition of adaptive governance as simple environmental governance that allows emergence of collective action capable of facilitating adaptation to change and surprise as well as the capacity to itself evolve. She argues it’s a good way to deal with complexity/uncertainty in health governance, for the common good.

Drawing on Ros McDougall’s approach to critical interpretive review, Whitton synthesised the literature to work out what people are talking about when they talk about adaptive governance in the health innovation and research context, drawing on lit in social ecological systems. Social learning, scale and adaptivity as key pillars in understanding adaptive governance. Read her PhD thesis for how to operationalise these concepts!

Michelle King – @ShellBot73 – examines Article 12 of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, looking at empirical evidence relating to the operation of this article in supported decision-making with people with profound intellectual disabilities. Many of the hard cases revolve around difficulties with communication.

She raises the issue of how to include people with profound difference arising from their intellectual disabilities in the research – interviews were undertaken with parents/decision-makers with the child present. In these cases, she argues that there is no real difference between supported and substituted decision-making. Incapacity should not be conflated with issues of citizenship/personhood. It is important to recognise the impact of profound difference and radical dependence of people in these situations, particularly during the transition to adulthood and the interactions with bureaucracy that become necessary during that transition. The emphasis on will/preferences in systems is a barrier for the never-capable.

Carolyn Adams and Felicity Flack presenting now on sharing public administrative data collections for health research. The key issue is balancing the rights of the individuals (whose data are in the collections) and the interests of the community/public (from the use of the data).

They focus on govt decision making and the rules around it in the release of data for research. Use of data is done without consent, and relies on social licence to justify it. Often overly focused on the right to privacy, we forget other rights and freedoms, inc right to health.

Consciously including the right to health in decision making processes may help to more effectively assess the proper role for privacy in data sharing for health research. Good decision making processes are: efficient (proportionate, timely, minimal duplication); transparent; accountable, and involve the community. in examining 3 jurisdictions, found many similarities in decision making processes, but also differences, eg when more efficient, less ethical deliberation/expertise.

• Also see this thread by Associate Professor Dominique E Martin summarising some sessions.

COVID reflections

Now that everyone has headed home, one final reflection on #AABHL2022 in the context of the pandemic.

We tried really hard to make the conference as safe and inclusive as possible, while recognising that everyone has different needs and risk thresholds.

So we offered the conference in a hybrid format (not many took up online registration initially, but a few switched at the last minute, either sick or increased COVID concerns).

We also had air purifiers in each room, opened doors and windows when it wasn’t too Antarctic-blasty outside, encouraged mask-wearing by making masks freely available, opened the rooms at breaks so people could eat outside (ie when you have to take your mask off, you could be out in the fresh air), had CO2 monitors and sanitiser available, and made it easy for people to join individual sessions online if they suddenly didn’t feel well and needed to stay in their accommodation.

So far, we haven’t heard of any cases, and we’ve had feedback from attendees who have need to be extra-covid cautious that they felt safe and included.

We didn’t make masks mandatory or require negative RATs, although we talked about at what level we thought those types of measures might be necessary. It’s worth noting that the AV support required to run the online side was very expensive, and is a barrier for smaller orgs – we were able to afford it this year because of higher than usual registration numbers and sponsorship, but this won’t always be possible.

Compromises in quality/coverage etc may be needed in future, or more creative solutions found.


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