Biosocieties最新文献

Epigenetics has generated excitement over its potential to inform health disparities research by capturing the molecular signatures of social experiences. This paper highlights the concerns implied by these expectations of epigenetics research and discusses the possible ramifications of 'molecularizing' the forms of social suffering currently examined in epigenetics studies. Researchers working with oppressed populations-particularly racially marginalized groups-should further anticipate how their results might be interpreted to avoid fueling prejudiced claims of biological essentialism. Introducing the concept of 'epigenetic citizenship,' this paper considers the ways environmentally responsive methylation cues may be used in direct-to-consumer testing, healthcare, and biopolitical interactions. The conclusion addresses the future of social epigenetics research and the utility of an epigenetic citizenship framework.

Genomic citizen science initiatives that promote public involvement in the study or manipulation of genetic information are flourishing. These initiatives are diverse and range from data donation studies, to biological experimentation conducted in home and community laboratories, to self-experimentation. Understanding the values that citizen scientists associate with their activities and communities can be useful to policy development for citizen science. Here, we report values-relevant data from qualitative interviews with 38 stakeholders in genomic citizen science. Applying a theoretical framework that describes values as transcendent beliefs about desirable end states or behaviors that can be categorized according to the motivational goals that they express and the interests they serve, we identified nine core values of genomic citizen science: altruism, autonomy, fun, inclusivity, openness, reciprocity, respect, safety, and solidarity.

The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their "chronic living" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.

It has become a trope to speak of the increasing value of health data in our societies. Such rhetoric is highly performative: it creates expectations, channels and justifies investments in data technologies and infrastructures, and portrays deliberations on political and legal issues as obstacles to the flow of data. Yet, important epistemic and political questions remain unexamined, such as how the value of data is created, what data journeys are envisioned by policies and regulation, and for whom data types are (intended to be) valuable. Drawing on two empirical cases, (a) interviews with physicians on the topic of digital selfcare, and (b) expectations of stakeholders on the use of Real-World Data in clinical trials, as well as existing literature, we propose a typology of what health data help us to do. This typology is intended to foster reflection about the different roles and values that data use unfolds. We conclude by discussing how regulation can better accommodate practices of valuation in the health data domain, with a particular focus on identifying regulatory challenges and opportunities for EU-level policy makers, and how Covid-19 has shed light on new aspects of each case.