Interdisciplinary perspectives on digital technologies for global mental health.

Digital Mental Health Technologies (DMHTs) have the potential to close treatment gaps in settings where mental healthcare is scarce or even inaccessible. For this, DMHTs need to be affordable, evidence-based, justice-oriented, user-friendly, and embedded in a functioning digital infrastructure. This viewpoint discusses areas crucial for future developments of DMHTs. Drawing back on interdisciplinary scholarship, questions of health equity, consumer-, patient- and developer-oriented legislation, and requirements for successful implementation of technologies across the globe are discussed. Economic considerations and policy implications complement these aspects. We discuss the need for cultural adaptation specific to the context of use and point to several benefits as well as pitfalls of DMHTs for research and healthcare provision. Nonetheless, to circumvent technology-driven solutionism, the development and implementation of DMHTs require a holistic, multi-sectoral, and participatory approach.

Can digital health democratize health care?

Much has been said about the potential of digital health technologies for democratizing health care. But how exactly is democratization with digital health technologies conceptualized and what does it involve? We investigate debates on the democratization of health care with digital health and identify that democratization is being envisioned as a matter of access to health information, health care, and patient empowerment. However, taking a closer look at the growing pool of empirical data on digital health, we argue that these technologies come short of materializing these goals, given the unequal health outcomes they facilitate. Building on this evidence, we argue that not only debates on democratization need to be connected to concerns of social determinants of health but also debates on the impact of digital health need to go far beyond democratization and engage with concerns of health justice.

Fair and equitable AI in biomedical research and healthcare: Social science perspectives.

Artificial intelligence (AI) offers opportunities but also challenges for biomedical research and healthcare. This position paper shares the results of the international conference "Fair medicine and AI" (online 3-5 March 2021). Scholars from science and technology studies (STS), gender studies, and ethics of science and technology formulated opportunities, challenges, and research and development desiderata for AI in healthcare. AI systems and solutions, which are being rapidly developed and applied, may have undesirable and unintended consequences including the risk of perpetuating health inequalities for marginalized groups. Socially robust development and implications of AI in healthcare require urgent investigation. There is a particular dearth of studies in human-AI interaction and how this may best be configured to dependably deliver safe, effective and equitable healthcare. To address these challenges, we need to establish diverse and interdisciplinary teams equipped to develop and apply medical AI in a fair, accountable and transparent manner. We formulate the importance of including social science perspectives in the development of intersectionally beneficent and equitable AI for biomedical research and healthcare, in part by strengthening AI health evaluation.

Patient-led innovation and global health justice: Open-source digital health technology for type 1 diabetes care.

Health innovation is mainly envisioned in direct connection to medical research institutions or pharmaceutical and technology companies. Yet, these types of innovation often do not meet the needs and expectations of individuals affected by health conditions. With the emergence of digital health technologies and social media, we can observe a shift, which involves people living with illness modifying and improving medical and health devices outside of the formal research and development sector, figuring both as users and innovators. This patient-led innovation has been celebrated in innovation studies and economics as a "bottom-up" type of innovation. In this article, we take a closer look at open-source patient-led innovation in the context of type 1 diabetes care. In our inquiry, we pay particular attention to the social and ethical dimensions of this innovation, building on empirical material. Upon exploring the notion of patient-led innovation and its socio-political context through the lens of intersectional and global health justice, we argue that a proactive strategy is needed to ensure that open-source patient-led innovation will be more globally accessible, center the health needs of the most underserved populations, as well as facilitate equitable and just health benefits. To support this aim, we provide a range of examples of different initiatives addressing the persistent inequalities that have so far inhibited patient-led innovation from more fully materializing its innovative potential.

Digital surveillance in a pandemic response: What bioethics ought to learn from Indigenous perspectives.

Our paper interrogates the ethics of digital pandemic surveillance from Indigenous perspectives. The COVID-19 pandemic has shown that Indigenous peoples are among the communities most negatively affected by pandemic infectious disease spread. Similarly to other racialized subpopulations, Indigenous people have faced strikingly high mortality rates from COVID-19 owing to structural marginalization and related comorbidities, and these high rates have been exacerbated by past and present colonial dominance. At the same time, digital pandemic surveillance technologies, which have been promoted as effective tools for mitigating a pandemic, carry risks for Indigenous subpopulations that warrant an urgent and thorough investigation. Building on decolonial scholarship and debates about Indigenous data sovereignty, we argue that should Indigenous communities wish to implement digital pandemic surveillance, then they must have ownership over these technologies, including agency over their own health data, how data are collected and stored, and who will have access to the data. Ideally, these tools should be designed by Indigenous peoples themselves to ensure compatibility with Indigenous cultures, ethics and languages and the protection of Indigenous lives, health and wellbeing.

Digital contact tracing and exposure notification: ethical guidance for trustworthy pandemic management.

There is growing interest in contact tracing apps (CT apps) for pandemic management. It is crucial to consider ethical requirements before, while, and after implementing such apps. In this paper, we illustrate the complexity and multiplicity of the ethical considerations by presenting an ethical framework for a responsible design and implementation of CT apps. Using this framework as a starting point, we briefly highlight the interconnection of social and political contexts, available measures of pandemic management, and a multi-layer assessment of CT apps. We will discuss some trade-offs that arise from this perspective. We then suggest that public trust is of major importance for population uptake of contact tracing apps. Hasty, ill-prepared or badly communicated implementations of CT apps will likely undermine public trust, and as such, risk impeding general effectiveness.

Proceedings from the CIHLMU Symposium 2020 on "eHealth: Trends and innovations".

Electronic Health (eHealth) is the use of information and communication technologies for health and plays a significant role in improving public health. The rapid expansion and development of eHealth initiatives allow researchers and healthcare providers to connect more effectively with patients. The aim of the CIHLMU Symposium 2020 was to discuss the current challenges facing the field, opportunities in eHealth implementation, to share the experiences from different healthcare systems, and to discuss future trends addressing the use of digital platforms in health. The symposium on eHealth explored how the health and technology sector must increase efforts to reduce the obstacles facing public and private investment, the efficacy in preventing diseases and improving patient quality of life, and the ethical and legal frameworks that influence the proper development of the different platforms and initiatives related to the field. This symposium furthered the sharing of knowledge, networking, and patient/user and practitioner experiences in low- and middle-income countries (LMIC) in both public and private sectors.

Pandemic Surveillance and Racialized Subpopulations: Mitigating Vulnerabilities in COVID-19 Apps.

Debates about effective responses to the COVID-19 pandemic have emphasized the paramount importance of digital tracing technology in suppressing the disease. So far, discussions about the ethics of this technology have focused on privacy concerns, efficacy, and uptake. However, important issues regarding power imbalances and vulnerability also warrant attention. As demonstrated in other forms of digital surveillance, vulnerable subpopulations pay a higher price for surveillance measures. There is reason to worry that some types of COVID-19 technology might lead to the employment of disproportionate profiling, policing, and criminalization of marginalized groups. It is, thus, of crucial importance to interrogate vulnerability in COVID-19 apps and ensure that the development, implementation, and data use of this surveillance technology avoids exacerbating vulnerability and the risk of harm to surveilled subpopulations, while maintaining the benefits of data collection across the whole population. This paper outlines the major challenges and a set of values that should be taken into account when implementing disease surveillance technology in the pandemic response.

The direct-to-consumer market for stem cell-based interventions in Australia: exploring the experiences of patients.

The prevalence of businesses selling autologous stem cell-based interventions to patients in Australia has raised serious concerns about how weaknesses in regulation have enabled the emergence of an industry that engages in aggressive marketing of unproven treatments to patients. Little is known about how patients experience this marketing and their subsequent interactions with practitioners. This paper reports results from 15 semistructured interviews with patients and carers, and also draws upon discussion conducted with patients, carers and family members (22 participants) in a workshop setting. We explore how Australian patients and carers understand and experience these interventions, and how their presumptions about the ethics of medical practice, and the regulatory environment in Australia have conditioned their preparedness to undergo unproven treatments.

Boy Interrupted - Biographical disruption during the transition to adulthood.

Most studies on the gendered aspects of biographical disruption are predicated on adult experiences of chronic illness, often based on heterogeneous samples. This paper goes beyond typologies by analysing the life-history case study of 'Sam', a 23-year-old Australian man raised in a refugee family, who developed a disabling chronic health condition at 15 years of age. The analysis illustrates how critical contextual factors like life-phase, combine with powerful social structures like ethnicity and gender to shape Sam's experiences of, and responses to, biographical disruption. Even before the onset of any symptoms, Sam was railing against the marginal position he occupied in the Australian gender order as a young Asian man. With little guidance on how to adapt his biography to integrate his new differently functioning body, Sam's transition to adulthood stalls, and he becomes in effect, a boy interrupted.

Is 'gender disappointment' a unique mental illness?

'Gender disappointment' is the feeling of sadness when a parent's strong desire for a child of a certain sex is not realised. It is frequently mentioned as a reason behind parents' pursuit of sex selection for social reasons. It also tends to be framed as a mental disorder on a range of platforms including the media, sex selection forums and among parents who have been interviewed about sex selection. Our aim in this paper is to investigate whether 'gender disappointment' represents a unique diagnosis. We argue that 'gender disappointment' does not account for a unique, distinct category of mental illness, with distinct symptoms or therapy. That said, we recognise that parents' distress is real and requires psychological treatment. We observe that this distress is rooted in gender essentialism, which can be addressed at both the individual and societal level.

Vulnerabilities and the Use of Autologous Stem Cells for Medical Conditions in Australia.

Australia has a booming market of unproven autologous stem cell- based interventions (SCBIs) for a wide range of medical conditions. Multiple SCBIs are provided in private practices outside of formal clinical trials. Some defend the provision of unproven SCBIs on grounds of patient choice. This essay interrogates this argument for patient choice and explores patients' vulnerabilities in clinical practice with autologous SCBIs. While all patients are inherently vulnerable, the regulatory framework for autologous stem cells in Australia exacerbates the problems associated with inherent vulnerabilities and generates situational and pathogenic vulnerabilities. A just state ought to implement regulatory measures that mitigate vulnerabilities and foster patients' autonomy.

Open for business: a comparative study of websites selling autologous stem cells in Australia and Japan.

Aim: This article examines online marketing practices of Japanese and Australian clinics offering putative autologous stem cell treatments. Materials & methods: We conducted google searches for keywords related to stem cell therapy and stem cell clinics in English and Japanese. Results: We identified websites promoting 88 point-of-sale clinics in Japan and 70 in Australia. Conclusion: Our findings provide further evidence of the rapid global growth in clinics offering unproven stem cell interventions. We also show that these clinics adopt strategies to promote their services as though they are consistent with evidentiary and ethical standards of science, research and medicine. Unless addressed, these practices risk harming not only vulnerable patients but also undermining public trust in science and medicine.

A Feminist Critique of Justifications for Sex Selection.

This paper examines dominant arguments advocating for the procreative right to undergo sex selection for social reasons, based on gender preference. I present four of the most recognized and common justifications for sex selection: the argument from natural sex selection, the argument from procreative autonomy, the argument from family balancing, and the argument from children's well-being. Together these represent the various means by which scholars aim to defend access to sex selection for social reasons as a legitimate procreative choice. In response, I contend that these justifications are flawed and often inconsistent and therefore fail to vindicate the practice.

The deadly business of an unregulated global stem cell industry.

In 2016, the Office of the State Coroner of New South Wales released its report into the death of an Australian woman, Sheila Drysdale, who had died from complications of an autologous stem cell procedure at a Sydney clinic. In this report, we argue that Mrs Drysdale's death was avoidable, and it was the result of a pernicious global problem of an industry exploiting regulatory systems to sell unproven and unjustified interventions with stem cells.