More than a decade of exacting scientific research involving paleontological fragments and ancient DNA has lately produced a series of pronouncements about a purportedly novel population of archaic hominins dubbed “the Denisova.” The science involved in these matters is both technically stunning and, socially, at times a bit reckless. Here I discuss the responsibilities which scientists incur when they make inductively risky pronouncements about the different relative contributions by Denisovans to genomes of members of apparent subpopulations of current humans. This (...) science is sensational: it is science which empirically speculates, to the public delight’s and entertainment, about scintillating topics such as when humans evolved, where we came from, and who else we were having sex with during our early hominin history. An initial characterization of sensational science emerges from my discussion of the case, as well as a diagnosis of an interactive phenomenon termed amplified inductive risk. (shrink)

Volume 20, Issue 10, October 2020, Page W1-W3.

Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with 24 people living with HIV who had (...) been previously incarcerated in county jails about their perspectives on and experiences with HIV surveillance, as part of a larger study to characterize ethical considerations in leveraging big data techniques to enhance continuity of care for incarcerated people living with HIV. -/- Results Most participants expressed support for the state health department tracking HIV testing results and viral load data. Several viewed HIV surveillance as a violation of privacy, and several had actively avoided contact from state public health outreach workers. Participants were most likely to express reservations about surveillance when they viewed the state’s motives as self-interested. Perspectives highlight the mistrust that structurally vulnerable people may have in the state’s capacity to act as an agent of welfare. Findings suggest that adopting a nuanced, context-sensitive view on surveillance is essential. -/- Conclusions Establishing trustworthiness through interpersonal interactions with public health personnel is important to reversing historical legacies of harm to racial minorities and structurally vulnerable groups. Empowering stakeholders to participate in the design and implementation of data infrastructure and governance is critical for advancing a data justice agenda, and can offset privacy concerns. The next steps in advancing the data justice framework in public health surveillance will be to innovate ways to represent the voices of structurally vulnerable groups in the design and governance of big data initiatives. (shrink)

Given the sordid history of injustices linking genetics to race and ethnicity, considerations of justice are central to ensuring the responsible development of precision medicine programmes around the world. While considerations of justice may be in tension with other areas of concern, such as scientific value or privacy, there are also tensions between different aspects of justice. This paper focuses on three particular aspects of justice relevant to this precision medicine: social justice, distributive justice and human rights. We describe the (...) implications of each for the use of race and ethnicity in precision medicine, and also how they intersect and potentially conflict with each another. By attending to these intersections, we aim to enrich and add nuance to debates over how best to proceed with precision medicine initiatives. (shrink)

ELSI efforts long have been troubled by critiques that they privilege scientific frameworks and grant scientists the power to set ethical agendas. As the first director of the Human Genome Project’...

In The Shifting Border, Ayelet Shachar observes that the ‘beast’ of state migration policy has broken out of its cage and shifted both outward – to intercept migrants before they can ‘touch base’ and thereby gain rights – and inward, to restrict and subvert the rights of migrants and others in Exclusionary Zones within state territory. Shachar wants to ‘tame’ the beast by obligating states and their agents to uphold basic rights wherever they act. The current article first questions whether (...) this ‘beast’ is necessarily monstrous, or whether it is not an admittedly excessive response to understandable challenges that arise due to the passivity of territorial states in the face of external forces. The article then suggests that the better response to this passivity is for states to embrace their legitimating function of trusteeship for the people (or moral patients) of the world as a whole. (shrink)

Though rapid collection of big data is ubiquitous across domains, from industry settings to academic contexts, the ethics of big data collection and research are contested. A nexus of data ethics issues is the concept of creep, or repurposing of data for other applications or research beyond the conditions of original collection. Data creep has proven controversial and has prompted concerns about the scope of ethical oversight. Institutional review boards offer little guidance regarding big data, and problematic research can still (...) meet ethical standards. While ethics seem concrete through institutional deployment, I frame ethics as produced. Informed by my ethnographic research at a large public university in the U.S., I explore ethics through two models: ethics as institutional procedures and ethics as acts and intentions. The university where I conducted fieldwork is the development grounds for a predictive model that uses student data to anticipate academic success. While students consent to data collection, the circumstances of consent and the degree to which they are informed are not so apparent, as many data are a product of creep. Drawing from interviews and participant observation with administrators, data scientists, developers, and students, I examine data ethics, from a larger institutional model to everyday enactments related to data creep. After demonstrating the limits of such models, I propose a remodeling of ethics that draws on recent works on data, justice, and refusal to pose generative questions for rethinking ethics in institutional contexts. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 51-58, January/February 2022.

Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improv...

The social impacts of computer technology are often glorified in public discourse, but there is growing concern about its actual effects on society. In this article, we ask: how does “consent” as an analytical framework make visible the social dynamics and power relations in the capture, extraction, and labor of data science knowledge production? We hypothesize that a form of boundary violation in data science workplaces—gender harassment—may correlate with the ways humans’ lived experiences are extracted to produce Big Data. The (...) concept of consent offers a useful way to draw comparisons between gender relations in data science and the means by which machines are trained to learn and reason. Inspired by how Big Tech leaders describe unsupervised machine learning, and the co-optation of “revolutionary” rhetoric they use to do so, we introduce a concept we call “techniques of invisibility.” Techniques of invisibility are the ways in which an extreme imbalance between exposure and opacity, demarcated along fault lines of power, are fabricated and maintained, closing down the possibility for bidirectional transparency in the production and applications of algorithms. Further, techniques of invisibility, which we group into two categories—epistemic injustice and the Brotherhood—include acts of subjection by powerful actors in data science designed to quell resistance to exploitative relations. These techniques may be useful in making further connections between epistemic violence, sexism, and surveillance, sussing out persistent boundary violations in data science to render the social in data science visible, and open to scrutiny and debate. (shrink)

Volume 24, Issue 10, October 2024, Page 98-100.

Background The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals’ routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals’ rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional (...) public health ethics frameworks. This study aimed to explore views on consent within MHS/CDR among critical stakeholders.Methods In 2021 we interviewed 26 US HIV stakeholders who identified as being critical or concerned about the rollout of MHS/CDR. Stakeholders included participants belonging to networks of people living with HIV, other advocates, academics, and public health professionals. This analysis focused on identifying the range of positions among critical and concerned stakeholders on consent affordances, opt-outs, how to best inform people living with HIV about how data about them are used in public health programs, and related ethical issues.Results Participants were broadly supportive of introducing some forms of consent into MHS/CDR. However, they differed on the specifics of implementing consent. While some participants did not support introducing consent affordances, all supported the idea that people living with HIV should be informed about how HIV surveillance and prevention is conducted and how individuals’ data are used.Conclusions MHS/CDR has caused sustained controversy. Among critical stakeholders, consent is generally desirable but contested, although the right for people living with HIV to be informed was centrally supported. In an era of big data-driven public health interventions and routine uses of HIV genetic sequence data in surveillance and prevention, CDC and other agencies should revisit public health ethics frameworks and consider the possibility of consent processes. (shrink)

De Bie et al. (2023) provide a thorough review of the existing literature concerning Artificial Womb Technology (AWT) using the PRISMA-ScR method. The summary of the scoping review they conducted a...

Vaccine refusal has increasingly been the focus of public health concern. Rates of children who are up to date on vaccines have declined in recent years, and vaccine refusal has been implicated in disease outbreaks. Most research on children who are not fully immunized identifies white affluent mothers as most likely to opt out by choice and Black mothers as more likely to face structural barriers that limit access to vaccines for their children. In this paper, we analyze social media (...) posts and online discussions among Black mothers to better understand their concerns about vaccines. Unlike white women who reject vaccines as a personal choice, Black mothers express unique concerns about the role of the state in their lives. Specifically, some Black mothers using social media view vaccines as a white technology and claim that white women have greater freedom in opting out of vaccines without the same risks to their families. They describe efforts to strategize interactions with pediatricians and other healthcare providers who can report them to social service agencies or block access to welfare and nutritional benefits for their families if they refuse vaccines. Black women’s experiences with structural gendered racism in interactions with healthcare and education systems shape vaccine decisions and should be taken seriously. (shrink)

This article explores negotiations over the humanistic versus mechanized components of care through an ethnographic account of digital phenotyping research. I focus on a US-based team of psychiatric and engineering professionals assembling a smartphone application that they hope will analyze minute changes in the sounds of speech during phone calls to predict when a user with bipolar disorder will have a manic or depressive episode. Contrary to conventional depictions of psychiatry as essentially humanistic, the discourse surrounding digital phenotyping positions the (...) machine as a necessary addition to mental health care precisely because of its more-than-human sensory, attentional capacities. The bipolar research team likewise portrays their app as capable of pinpointing sonic signs of mental illness that humans, too distracted by semantic meaning, otherwise ignore. Nevertheless, the team members tasked with processing the team’s data must craft and perform a selectively attentive machinic subject position, which they call “listening like a computer”: a paradoxical mode of attention and inattention. By tracing the team’s discursive and on-the-ground enactments of care and attention as both humanistic and machinic, I tune a critical ear to the posthuman promises of digital phenotyping. (shrink)