The speed and scale of the COVID‐19 pandemic has highlighted the limits of current health systems and the potential promise of non‐establishment research such as “DIY” research. We consider one example of how DIY research is responding to the pandemic, discuss the challenges faced by DIY research more generally, and suggest that a “trust architecture” should be developed now to contribute to successful future DIY efforts.

Advances in neuroscience have enabled the transition of transcranial direct current stimulation (tDCS) from research and clinical settings to public use. For this primarily home-based context, tDCS has been popularized as a do-it-yourself (DIY) approach to improved cognition and wellness. The line between wellness and health is blurry, however, and little is known about how engagement with therapeutic tDCS impacts users’ interactions with other interventions such as clinical consultations, pharmacotherapy, complementary medicine, and even other neurotechnology. To close this gap, (...) we collected data from the online content aggregator Reddit and analyzed posts pertaining to tDCS. Findings indicate that most users turn to Reddit to request information about tDCS as an adjunct, but not as a bypass, to ongoing or prior approaches. Posts suggest that mainstream medical care is viewed as necessary but not sufficient to address conditions such as depression and anxiety. Users discuss a mix of benefits and harms. This discourse provides valuable insights into the health practices, concerns and priorities of users, and new knowledge for informing applications of neurotechnology both inside and outside the therapeutic setting. (shrink)

In this article, I examine the rhetoric of democratic science within the field of synthetic biology. The still emerging field of synthetic biology claims to be a new kind of science based on the promises of affordable medicines, environmental bioremediation, and democratic, do-it-yourself science practices. I argue that the formation of a more democratic, DIY portion of this field represents an intervention into ethics debates by becoming “the proper informed public.” Through an analysis of twelve DIY and community-based synthetic biology (...) organizations’ websites, I found that democratic science was presented as a novel, progressive approach to science that addresses ethical concerns and at the same time produces better scientific results. In part, these claims were made possible through a reconfiguring of the boundaries between Science and the Public where scientists lay claim to solidarity with the public at large in opposition to traditional biosciences and Big Bio. My research suggests that the superficial use of the language of rights and democracy relegitimizes the primacy of scientific discovery to solve societal problems. I further suggest that by becoming the proper informed public, ethical challenges from publics critical of genetic sciences may become delegitimized. (shrink)

Devices that record from and stimulate the brain are currently available for consumer use. The increasing sophistication and resolution of these devices provide consumers with the opportunity to engage in do-it-yourself brain research and contribute to neuroscience knowledge. The rise of do-it-yourself (DIY) neuroscience may provide an enriched fund of neural data for researchers, but also raises difficult questions about data quality, standards, and the boundaries of scientific practice. We administered an online survey to brain–computer interface (BCI) researchers to gather (...) their perspectives on DIY brain research. While BCI researcher concerns about data quality and reproducibility were high, the possibility of expert validation of data generated by citizen neuroscientists mitigated concerns. We discuss survey results in the context of an established ethical framework for citizen science, and describe the potential of constructive collaboration between citizens and researchers to both increase data collection and advance understanding of how the brain operates outside the confines of the lab. (shrink)

This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to (...) formulate new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (shrink)

Public investments in genomic and precision medicine have begun to yield clinically useful interventions, most recently, for example, two new, FDA-approved gene therapies for sickle cell disease (F...

ABSTRACT This article analyzes the politics of nostalgia’s history as a fatal disease between the seventeenth and nineteenth centuries, especially as it was applied to slaves in late eighteenth-century Cuba. I trace nostalgia’s medical history beginning with its inauguration in Swiss medicine in 1688, and then describe the contours of its transformation into a military disease primarily affecting white soldiers in France and the United States. Finally, I translate and analyze key elements of Francisco Barrera y Domingo’s work on (...) nostalgia as experienced by slaves in sugar mills in Havana. I show that Barrera uses his analysis of nostalgia and its treatment to describe the slaves’ harrowing conditions and homesickness. Nevertheless, in denying slaves the ability to return home and in failing to propose the abolition of the slave system in the wake of the Haitian Revolution, I argue, Barrera in fact deploys the diagnosis of nostalgia in order to medicalize and pathologize the slaves’ reactions and resistance to their captivity. Thus, despite his sympathy to the slaves, I conclude that for Barrera, nostalgia functions as a tool to better manage the slaves as laborers and as property. (shrink)

Today, DIY -- do-it-yourself -- describes more than self-taught carpentry. Social media enables DIY citizens to organize and protest in new ways and to repurpose corporate content in order to offer political counternarratives. This book examines the usefulness and limits of DIY citizenship, exploring the diverse forms of political participation and "critical making" that have emerged in recent years. The authors and artists in this collection describe DIY citizens whose activities range from activist fan blogging and video production to knitting (...) and the creation of community gardens. Contributors examine DIY activism, describing new modes of civic engagement that include Harry Potter fan activism and the activities of the Yes Men. They consider DIY making in learning, culture, hacking, and the arts, including do-it-yourself media production and collaborative documentary making. They discuss DIY and design and how citizens can unlock the black box of technological infrastructures to engage and innovate open and participatory critical making. And they explore DIY and media, describing activists' efforts to remake and reimagine media and the public sphere. As these chapters make clear, DIY is characterized by its emphasis on "doing" and making rather than passive consumption. DIY citizens assume active roles as interventionists, makers, hackers, modders, and tinkerers, in pursuit of new forms of engaged and participatory democracy. _Contributors_Mike Ananny, Chris Atton, Alexandra Bal, Megan Boler, Catherine Burwell, Red Chidgey, Andrew Clement, Negin Dahya, Suzanne de Castell, Carl DiSalvo, Kevin Driscoll, Christina Dunbar-Hester, Joseph Ferenbok, Stephanie Fisher, Miki Foster, Stephen Gilbert, Henry Jenkins, Jennifer Jenson, Yasmin B. Kafai, Ann Light, Steve Mann, Joel McKim, Brenda McPhail, Owen McSwiney, Joshua McVeigh-Schultz, Graham Meikle, Emily Rose Michaud, Kate Milberry, Michael Murphy, Jason Nolan, Kate Orton-Johnson, Kylie A. Peppler, David J. Phillips, Karen Pollock, Matt Ratto, Ian Reilly, Rosa Reitsamer, Mandy Rose, Daniela K. Rosner, Yukari Seko, Karen Louise Smith, Lana Swartz, Alex Tichine, Jennette Weber, Elke Zobl. (shrink)

The concept of disease remains hotly contested. In light of problems with existing accounts, some theorists argue that the disease concept ought to be eliminated. We answer this skeptical challenge by reframing the discussion in terms of the role that the disease concept plays in the complex network of health-care institutions in which it is deployed. We argue that while prevailing accounts do not suffer from the particular defects that critics have identified, they do suffer from other deficits, and this (...) leads us to propose a new account that satisfies the desiderata for a concept of disease in human medicine. (shrink)

This perspective article explores the use of digital twins (DTs) in medicine, highlighting its capacity to simulate risks and personalize treatments while examining the emerging bioethical concerns. Central concerns include power dynamics, exclusion, and misrepresentation. We propose adopting a relational bioethical approach that advocates for a comprehensive assessment of DTs in medicine, extending beyond individual interactions to consider broader structural relations and varying levels of access to power. This can be achieved through two key relational recommendations: acknowledging the (...) impact of uneven relational structures on access to medical care and promoting social justice by evaluating resource allocation. While DTs in medicine offer promising advancements, a relational bioethical lens may provide a nuanced understanding, fostering equitable, inclusive and responsible integration of DTs into medical practice. (shrink)

Medical practice is practiced morality, and clinical research belongs to normative ethics. The present book elucidates and advances this thesis by: 1. analyzing the structure of medical language, knowledge, and theories; 2. inquiring into the foundations of the clinical encounter; 3. introducing the logic and methodology of clinical decision-making, including artificial intelligence in medicine; 4. suggesting comprehensive theories of organism, life, and psyche; of health, illness, and disease; of etiology, diagnosis, prognosis, prevention, and therapy; and 5. investigating the moral (...) and metaphysical issues central to medical practice and research. Many systems of (classical, modal, non-classical, probability, and fuzzy) logic are introduced and applied. Fuzzy medical deontics, fuzzy medical ontology, fuzzy medical concept formation, fuzzy medical decision-making and biomedicine and many other techniques of fuzzification in medicine are introduced for the first time. -/- . (shrink)

Dr. Galasso’s (2024) insightful article expands the ongoing debate on the utility and equity of precision medicine in public and population health. The initiatives mentioned, Genomics England and t...

The development of gene expression profiling and next-generation sequencing technologies have steered oncogenomics to the forefront of precision medicine. This created a need for harmonious cooperation between clinicians and researchers to increase access to precision oncology, despite multiple implementation challenges being encountered. The aim is to apply personalised treatment strategies early in cancer management, targeting tumour subtypes and actionable gene variants within the individual’s broader clinical risk profile and wellbeing. A knowledge-generating database linked to the South African Medical Research (...) Council’s Genomic Centre has been created for the application of personalised medicine, using an integrated service and research approach. Insights gained from patient experiences related to tumour heterogeneity, access to targeted therapies and incidental findings of pathogenic germline variants in tumour DNA, provided practice-changing evidence for the implementation of a cost-minimisation pathology-supported genetic testing strategy. Integrating clinical care with genomic research through data sharing advances personalised medicine and maximises precision oncology benefits. (shrink)

In their article, Sahan and colleagues have presented ethical dilemmas faced by clinical scientists working in genomics.1 This is a welcome development since thus far little has been published on the ethical issues faced by clinical scientists in general. In their article, the authors present the three themes which emerged from discussions with clinical scientists in respect to three case studies: ‘(1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty (...) of results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising’.1 One theme which appeared not to emerge is that of ethics education received by clinical scientists during their training, and this is the theme on which this commentary will focus. As noted elsewhere, ‘Clinical Scientists receive some lectures on clinical and research ethics as part of their training, but it amounts to only to a couple of hours of lectures (references omitted)’.2 The usual route to becoming a clinical scientist involves undertaking the 3-year postgraduate Scientist Training Programme (STP), though the ‘equivalence’ route is quite commonly taken by clinical scientists working in …. (shrink)

In their target article, Galasso (2024) highlights the limitations of upstream inclusion in precision medicine research to produce downstream benefits to participants and proposes precision public...

In Sahan et al ’s article,1 they present the ethical challenges faced by clinical laboratory scientists in genetic medicine, including labour allocation and responsibility, interpretation and accuracy of results with new technologies, and the need for better standardisation and ethical consistency. At the same time, they also propose a potential solution to the aforementioned challenges: ethical preparedness(EP). Along with their vivid case discussions and insightful analysis, I would like to propose two more points that are worth further examination and (...) discussion to aid stakeholders in better comprehending the ethical issues that clinical laboratory scientists face in the practice of genetic medicine. The case 1 reported by Sahan et al raises concerns about who should be responsible for tracking families or individuals with genetic results, particularly in the absence of mainstream services to track future risks. However, this should not be a factor influencing the decision to inform gene carriers. If there is a clear division of responsibilities in current practice, clinical laboratory scientists can report detected gene carriers without psychological burden. However, the decision to report gene carriers should be based on who is being served when clinical laboratory scientists face genetic problems in clinical practice and who is being considered when …. (shrink)

As disenchantment began to be recognized as a recurring, never-ending process in recent scholarship, “When Jupiter Meets Saturn” argues that Aby Warburg and Karl Sudhoff’s debate on Reformation astrological medicine provided a new theory of the emergence of modern science and rationality. Drawing on their encounter and divergence in interwar Germany, especially their curatorial collaboration for the 1911 Internationale Hygiene-Ausstellung, the article shows that Warburg and Sudhoff generated completely opposite historical evaluations of astrological medicine using the very same (...) materials. Approaching history as healers, they developed different ways of seeing from medical epistemologies and brought out entangled temporalities from images. (shrink)

Targeted modifications of the human epigenome, epigenome editing (EE), are around the corner. For EE, techniques similar to genome editing (GE) techniques are used. While in GE the genetic information is changed by directly modifying DNA, intervening in the epigenome requires modifying the configuration of DNA, for example, how it is folded. This does not come with alterations in the base sequence (‘genetic code’). To date, there is almost no ethical debate about EE, whereas the discussions about GE are voluminous. (...) Our article introduces EE into bioethics by translating knowledge from science to ethics and by comparing the risks of EE with those of GE. We, first (I), make the case that a broader ethical debate on EE is due, provide scientific background on EE, compile potential use-cases and recap previous debates. We then (II) compare EE and GE and suggest that the severity of risks of novel gene technologies depends on three factors: (i) the choice of an ex vivo versus an in vivo editing approach, (ii) the time of intervention and intervention windows and (iii) the targeted diseases. Moreover, we show why germline EE is not effective and reject the position of strong epigenetic determinism. We conclude that EE is not always ethically preferable to GE in terms of risks, and end with suggestions for next steps in the current ethical debate on EE by briefly introducing ethical challenges of new areas of preventive applications of EE (III). (shrink)

In 2022, the Camden Coalition Medical-Legal Partnership began providing civil and criminal legal services to substance use disorder patients at Cooper University Health Care’s Center for Healing. This paper discusses early findings from the program’s first year on the efficacy of the provision of criminal-legal representation, which is uncommon among MLPs and critical for this patient population. The paper concludes with takeaways for other programs providing legal services in an addiction medicine setting.

‘四象醫學’으로 象徵되는 동무 이제마(1837~1900)의 四象說은 이제 학적체계를 구축한 하나의 학문으로서 정립되어, 그 학문적 위상은 매우 높다고 할 수 있다. 하지만 그의 사상설에는 기초적인 이론적 토대에 관한 논의에 있어서조차 아직 해결하지 못한 뜨거운 쟁점 또한 존재한다.BR 크게 보면 두 가지 정도인데, 그중 하나가 ‘사상의학은 한의학의 기초 이론인 오행론을 수용하는가?’의 與否문제이며, 또 다른 하나는 “동무 자신의 醫論에 (본래 ‘四象’이라는 용어의 출처인) 『주역』의 ‘易理’를 적용했을까?”라는 문제이다.BR 이에 대한 견해는 현재 학자에 따라 긍정 혹은 부정으로 크게 갈린다. 동무의 주요 저작으로는 철학서인 『格致藁』(1880~1893)와 의학적 내용을 (...) 담고 있는 『東醫壽世保元』(1894)이 있고, 이외에도 易理로 『東醫壽世保元』을 풀이한 『東武遺稿』(시기 미상), 五行에 관한 서술이 들어 있는 『東醫壽世保元草本卷』(1882~1883?) 등이 있으나, 후자의 문헌들은 典據로서의 신뢰를 얻지 못하고 있다. ‘四象’의 주역설을 옹호하는 이들은 주로 『東武遺稿』를 전거로 제시하지만, 반론을 제기하는 이들은 필사본 초고 형태로 발견된 이미상의 문집이 동무의 직접적인 저작물이 아닐 수 있다는 의구심을 품는다.BR 본고에서는 『東醫壽世保元』을 역리로 해석한 斗庵韓東錫(1911~1968)의 『東醫壽世保元註釋』(1967)을 통해 『東醫壽世保元』 ｢性命論｣서두에 나오는 개념들의 敍述方式을 분석하였다. 이 서술 방식을 相異한 방식으로 서술한 다른 문장들과 비교해 보면, ‘四象’의 導出이 易理에 근거하고 있음을 추론해 보는 것이 가능하다. 즉 『동의수세보원』 ｢性命論｣과 『東武遺稿』에 나타난 四象에 관한 서술 순서[방식]는 易理[天機]의 관점과 인간주체적[四象人] 관점을 병행했을 때라야 비로소 이해 가능하다. 다시 말해 본고에서는 ‘四象’의 도출 과정에 관한 중요한 단서를 동무가 직접 저술한 문헌들을 통해 얻고자 하였다. (shrink)

Society has historically not taken a benign view of genetic disease. The laws permitting sterilization of the mentally re tarded~ and those proscribing consanguineous marriages are but two examples. Indeed as far back as the 5th-10th centuries, B.C.E., consanguineous unions were outlawed (Leviticus XVIII, 6). Case law has traditionally tended toward the conservative. It is reactive rather than directive, exerting its influence only after an individual or group has sustained injury and brought suit. In contrast, state legislatures have not been (...) inhibited in enacting statutes. Many of their products can be characterized as hasty, unnecessary, ill-conceived, and based on the heart rather than the head. Moreover the lack of expert consultation sought has also been remarkable. One state legislature, for example, has advocated immunization for sickle cell anemia! Many others have enacted laws for the screening of inborn errors of metabolism, e.g., phenylketon uria, but have poorly defined the lines of responsibility to secure compliance. A spate of specific disease-related bills has emerged in the u.S. Congress, each seeking recognition and appropriations. Sickle cell anemia, hemophilia, Cooley's anemia and Tay-Sachs disease have been among the front-runners for support. Finally, in 1975, Congress has begun to examine an omnibus bill concerning all forms of genetic disease. The bill, termed the National Genetic Diseases Act is, however, still far from being enacted. (shrink)

In Western literatures, "conflict" is a general term that refers to discord between two or more entities. In Islamic jurisprudence, however, in addition to the term "conflict", there is another term which is called tazāhum. The two terms, however, have different definitions. Conflict between two concepts, for instance, indicates that one is right and the other is wrong, while tazāhum does not necessarily have to be between right and wrong, and may appear between two equally right concepts. Moreover, conflict exists (...) on a legislative level, while tazāhum is a matter of obedience and adherence, meaning that in practice, both sides cannot continue to coexist. Conflict of interest is a known term in Western literatures, and according to D.F. Thompson, it refers to a situation where professional judgment regarding a primary interest is improperly and unjustifiably influenced by a secondary interest. Taking into account Thompson's definition and the distinction between "conflict" and "tazāhum", the English term "conflict of interest" translates to "tazāhum of interest" in Islamic jurisprudence as it refers to a person's action without reflecting right or wrong, and simply concerns priority of one interest over another. The resolution to tazāhum in Islamic jurisprudence lies in two principles: the principle of significance and the principle of choice. For instance, in case of conflict or tazāhum between the interests of patient and physician, the patient's interest should be the main concern based on the principle of significance. Although Western literatures propose methods such as disclosure or prohibition in order to resolve conflict of interest, the foundation for these solutions seems to have been the principle of significance. (shrink)

The research is developed with the use of deductive and descriptive analytical methods used to obtain information on doctrine and jurisprudence and to establish and describe specific situations in the field of Ecuadorian Medical Law respectively. The main objective is to provide scientific and doctrinal tools to understand guilt in cases of omissive conduct in Ecuadorian medical practice, as well as its comparison with other countries such as Colombia, Mexico, Cuba and Argentina, the results of the research show that the (...) doctrine in the relationship to the categories of Omission, Guilt, Guarantor Position and Permitted Risk is broad and is based on scientific-doctrinal advances of the Normative Conception of Guilt comprised between 1995 and 2022. To establish useful criteria and conclusions, the discussion focuses on defining what is considered “guilty” in the context of Medical Law, highlighting the importance of elements such as the objective duty, the harmful result and the analysis of the concomitant circumstances, emphasizing the importance of considering the context and development of the facts in cases of omissive conduct in medicine and not only the result. In relation to omissions in criminal law, a distinction is made between proper and improper and finally, it concludes by suggesting the modification of article 146 of the Organic Integral Criminal Code to guarantee due process and a effective judicial protection in matters related to health in Ecuador, specifically with regard to causality in cases of omissive conduct. (shrink)

1. At least since W.F. Edwards’ pioneering articles on medieval and renaissance interpretations of the prologue to Galen's Art of Medicine,1 it has often been maintained that Latin scholastics inte...

We argue DIY art provides a relatively pressure-free learning environment, using self-portraits as our main examples.

Several countries maintain universal health coverage, which implies responsibility to organize delivery formats of healthcare services and products for citizens. In Brazil, the health system has a principle of universal access for more than 30 years, but many deficiencies remain and the country observes a day practice for those seeking judicial decisions to determine provision of healthcare.

How social media and DIY communities have enabled new forms of political participation that emphasize doing and making rather than passive consumption. Today, DIY—do-it-yourself—describes more than self-taught carpentry. Social media enables DIY citizens to organize and protest in new ways and to repurpose corporate content in order to offer political counternarratives. This book examines the usefulness and limits of DIY citizenship, exploring the diverse forms of political participation and “critical making” that have emerged in recent years. The authors and artists (...) in this collection describe DIY citizens whose activities range from activist fan blogging and video production to knitting and the creation of community gardens. Contributors examine DIY activism, describing new modes of civic engagement that include Harry Potter fan activism and the activities of the Yes Men. They consider DIY making in learning, culture, hacking, and the arts, including do-it-yourself media production and collaborative documentary making. They discuss DIY and design and how citizens can unlock the black box of technological infrastructures to engage and innovate open and participatory critical making. And they explore DIY and media, describing activists' efforts to remake and reimagine media and the public sphere. As these chapters make clear, DIY is characterized by its emphasis on “doing” and making rather than passive consumption. DIY citizens assume active roles as interventionists, makers, hackers, modders, and tinkerers, in pursuit of new forms of engaged and participatory democracy. Contributors Mike Ananny, Chris Atton, Alexandra Bal, Megan Boler, Catherine Burwell, Red Chidgey, Andrew Clement, Negin Dahya, Suzanne de Castell, Carl DiSalvo, Kevin Driscoll, Christina Dunbar-Hester, Joseph Ferenbok, Stephanie Fisher, Miki Foster, Stephen Gilbert, Henry Jenkins, Jennifer Jenson, Yasmin B. Kafai, Ann Light, Steve Mann, Joel McKim, Brenda McPhail, Owen McSwiney, Joshua McVeigh-Schultz, Graham Meikle, Emily Rose Michaud, Kate Milberry, Michael Murphy, Jason Nolan, Kate Orton-Johnson, Kylie A. Peppler, David J. Phillips, Karen Pollock, Matt Ratto, Ian Reilly, Rosa Reitsamer, Mandy Rose, Daniela K. Rosner, Yukari Seko, Karen Louise Smith, Lana Swartz, Alex Tichine, Jennette Weber, Elke Zobl. (shrink)

: This study investigates the changes in the body image that occurred in the crucial cultural transformations that took place at the outset of Western rational thought in the transition from Archaic age to Classical age Greece. It does so from the delimited perspective that is offered by the group of medical writings known as the Hippocratic Corpus (specifically works on prognostics, dietetics, and surgery) that were contemporary with the early Classical age, but it also suggests parallel changes occurring in (...) other cultural realms. The body images for that period are found to be diverse but yet all colored by the general transition from a ritual and praxis based experience of the world to one tempered by contemplative and dogmatic speculation. General observations are also made upon the use of the "body image" as a means of historical analysis in periods of cultural transformation. (shrink)

This Major Reference series brings together a wide range of key international articles in law and legal theory. Many of these essays are not readily accessible, and their presentation in these volumes will provide a vital new resource for both research and teaching. Each volume is edited by leading international authorities who explain the significance and context of articles in an informative and complete introduction.

"Dying in the City of Blues: Sickle Cell Anemia and the Politics of Race and Health" by Keith Wailoo is reviewed.