There is growing interest in contact tracing 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. (shrink)

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. (shrink)

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. (shrink)

Bioethics, Volume 36, Issue 3, Page 305-312, March 2022.

The concept of sex selection for “family balancing” is based on the notion that a family is “balanced” when it includes children of “both genders.” Clinics that offer IVF for family balancing present it as an option for couples who “want to experience the joy of raising both a male and female child”. Families with at least one child of each gender are claimed to have gender diversity and to provide more enriching experiences to all family members. Some theorists call (...) these families “balanced”, while others acknowledge that such a term could be pejorative, implying that families with children of one gender are unbalanced and, thereby, lesser. These theorists... (shrink)

Recent years have seen the proliferation of a global industry selling stem cell–based interventions. SCBIs are being marketed around the globe in both low- and high-income countries, including Australia, China, India, Japan, Mexico, and the United States. Per capita, Australia has one of the highest prevalence of clinics selling stem cell products per capita, and its drug regulator, the Therapeutic Goods Administration, has excluded autologous stem cells, which are obtained from the patient's own body, from the regulation of biological drug (...) products. This exemption has enabled rapid growth of a... (shrink)

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.

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. (shrink)

In European countries (excluding the UK and Ireland), official statistics do not use racial or ethnic categories, but instead rely on proxies to collect data about discrimination. In the German microcensus, the proxy category adopted is ‘migration background’ (Migrationshintergrund): an individual has a ‘migration background’ when one or more of their parents does not have German citizenship by birth. We apply a coupled ethical-epistemic analysis to the ‘migration background’ category to illuminate how the epistemic issues contribute to ethical ones. Our (...) central claim is that these ethical-epistemic issues with the ‘migration background’ category are best analysed in terms of Charles Mills's ‘white ignorance’. Appealing to Annette Martín's structural account of white ignorance, we highlight the cyclical reinforcement of ignorance and racial injustice in the use of the ‘migration background’ variable. Colourblind eliminativism about race perpetuates the use of ‘migration background’, which sustains and intensifies racial injustices. (shrink)

Our paper was written to highlight the need for mitigating vulnerability in COVID-19 tracing technology. As the pandemic was unravelling in mid 2020 and infection rates were rising steeply across the globe, we were following the news on emerging response measures and their social impact. We were alarmed by media reports regarding racial profiling and criminalization related to the implementation of physical distancing measures. Media reports documenting the fining of predominantly Black and Hispanic people in New York City, the closures (...) of Roma settlements in Spain, Slovakia, or Romania, or the disproportionate patrolling of migrant neighborhoods in Sydney, Australia, made it obvious that... (shrink)

‘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. (shrink)

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. (shrink)