Challenges for precision public health communication in the era of genomic medicine.

Although still in the early stages of development, the advent of fast, high-output, and cost-effective next-generation DNA sequencing technology is moving precision medicine into public health. Before this shift toward next-generation sequencing in public health settings, individual patients met geneticists after showing symptoms and through limited family screening. In the new era of precision public health, everyone is a possible participant in genetic sequencing, simply by being born (newborn screening), by donating blood (biobanking), or through population screening. These initiatives are increasingly offered to individuals throughout their life and more individuals are encountering opportunities to use DNA sequencing. This article raises awareness of these growing areas and calls for different models of public engagement and communication about genomics, including screening asymptomatic populations, obtaining consent for unspecified and unforeseen future uses of genomic data, and managing variants of uncertain significance. Given that such communication challenges loom large, established norms of practice in genomic medicine and research should be reconsidered.

Clinical signs associated with earlier diagnosis of children with autism Spectrum disorder.

BACKGROUND: The objective of this study is to gain new insights into the relationship between clinical signs and age at diagnosis. METHOD: We utilize a new, large, online survey of 1743 parents of children diagnosed with ASD, and use multiple statistical approaches. These include regression analysis, factor analysis, and machine learning (regression tree). RESULTS: We find that clinical signs that most strongly predict early diagnosis are not necessarily specific to autism, but rather those that initiate the process that eventually leads to an ASD diagnosis. Given the high correlations between symptoms, only a few signs are found to be important in predicting early diagnosis. For several clinical signs we find that their presence and intensity are positively correlated with delayed diagnosis (e.g., tantrums and aggression). Even though our data are drawn from parents' retrospective accounts, we provide evidence that parental recall bias and/or hindsight bias did not play a significant role in shaping our results. CONCLUSION: In the subset of children without early deficits in communication, diagnosis is delayed, and this might be improved if more attention will be given to clinical signs that are not necessarily considered as ASD symptoms. Our findings also suggest that careful attention should be paid to children showing excessive tantrums or aggression, as these behaviors may interfere with an early ASD diagnoses.

'Is your accuser me, or is it the software?' Ambiguity and contested expertise in probabilistic DNA profiling.

What happens when an algorithm is added to the work of an expert group? This study explores how algorithms pose a practical problem for experts. We study the introduction of a Probabilistic DNA Profiling (PDP) software into a forensics lab through interviews and court admissibility hearings. While meant to support experts' decision-making, in practice it has destabilized their authority. They respond to this destabilization by producing alternating and often conflicting accounts of the agency and significance of the software. The algorithm gets constructed alternately either as merely a tool or as indispensable statistical backing; the analysts' authority as either independent of the algorithm or reliant upon it to resolve conflict and create a final decision; and forensic expertise as resting either with the analysts or with the software. These tensions reflect the forensic 'culture of anticipation', specifically the experts' anticipation of ongoing litigation that destabilizes their control over the deployment and interpretation of expertise in the courtroom. The software highlights tensions between the analysts' supposed impartiality and their role in the courtroom, exposing legal and narrative implications of the changing nature of expertise and technology in the criminal legal system.

An international survey on anterior cruciate ligament reconstruction practices.

PURPOSE: Bone-patellar-tendon-bone (BPTB) autografting fixed with metal interference screws (IS) is the gold standard for anterior cruciate ligament (ACL) reconstruction. Advances in surgical technology provide a wide choice of grafts, fixation devices and surgical approaches. METHODS: Two-hundred and sixty-one orthopedic surgeons of ten subspecialties from 57 countries were surveyed on their choice of graft and fixation device, the number of reconstructed bundles, and arthroscopic portal. Their preferences were analyzed according to country of origin, field of expertise and seniority, and compared to current publications. RESULTS: Hamstring autografting was the most popular choice (63 %), then BPTB (26 %) and allograft (11 %). The anteromedial portal was preferred over the traditional transtibial portal (68 % versus 31 %). Two-thirds reported routinely performing a single-bundle graft reconstruction, compared to one-third who used the double-bundle technique. The Endo-button was the most common graft fixation method (40 %), followed by the bioabsorbable IS (34 %), metallic IS (12 %), rigidfix (10 %) and others (4 %). The preferences of hamstring tendon grafting and the anteromedial portal are not supported in the literature. Responses from North American and European surgeons were different from all the others. CONCLUSIONS: Surgeon preferences in ACL reconstruction differ considerably worldwide. Common practice is not always supported by evidence-based publications.

Long Covid requires a global response centred on equity and dialogue.

Long Covid, or Post-Covid Conditions, is a global health problem. Yet we know strikingly little about the different experiences of Long Covid patients cross-nationally. To address this shortcoming, we conducted an online survey of Long Covid patients active on social media in the U.S. (n = 334, October to December 2021) and Brazil (n = 144, January to April 2022). Our analysis of short answer responses indicates patient dissatisfaction with medical care provided for Long Covid in both the U.S. and Brazil. For Long Covid patients in Brazil, there were additional concerns raised about the lack of local expertise about their condition. Based on these results, we urge policymakers to expand the education of medical professionals in order to raise awareness of Long Covid. Experts in the Global North should also be encouraged to engage in dialogue with patient groups and experts in the Global South, in order to better understand how local contexts shape the experience of Long Covid.

Whose Advice is Credible? Claiming Lay Expertise in a Covid-19 Online Community.

During the initial months of the Covid-19 pandemic, credentialed experts-scientists, doctors, public health experts, and policymakers-as well as members of the public and patients faced radical uncertainty. Knowledge about how Covid-19 was spread, how best to diagnose the disease, and how to treat infected patients was scant and contested. Despite this radical uncertainty, however, certain users of Covid-19 Together, a large online community for those who have contracted Covid-19, were able to dispense advice to one another that was seen as credible and trustworthy. Relying on Goffman's dramaturgical theory of social interaction, we highlight the performative dimension of claims to lay expertise to show how credibility is accrued under conditions of radical uncertainty. Drawing on four months of data from the forum, we show how credible performances of lay expertise necessitated the entangling of expert discourse with illness experience, creating a hybrid interlanguage. A credible performance of lay expertise in this setting was characterized by users' ability to switch freely between personal and scientific registers, finding and creating resonances between the two. To become a credible lay expert on this online community, users had to learn to ask questions and demonstrate a willingness to engage with biomedical knowledge while carefully generalizing their personal experience.

Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment.

While we know a lot more about Long Covid today, patients who were infected with Covid-19 early on in the pandemic and developed Long Covid had to contend with medical professionals who lacked awareness of the potential for extended complications from Covid-19. Long Covid patients have responded by labeling their contentious interactions with medical professionals, organizations, and the broader medical system as "gaslighting." We argue that the charge of medical gaslighting can be understood as a form of ontological politics. Not only do patients demand that their version of reality be recognized, but they also blame the experts who hold gatekeeping power over their medical care for producing a distorted version of said reality. By analyzing results from an online survey of Long Covid patients active on social media in the United States (n â€‹= â€‹334), we find that experiences of contention and their reframing as "gaslighting" were common amongst our respondents. In short answer responses about their experience obtaining medical care for Long Covid, our respondents described encountering medical professionals who dismissed their experience, leading to lengthy diagnostic odysseys and lack of treatment options for Long Covid. Even though we are limited by characteristics of our sample, there is good reason to believe that these experiences and their contentious reframing as medical gaslighting are exacerbated by gender, class, and racial inequalities.

The science of trust: future directions, research gaps, and implications for health and risk communication.

'Trust is among the most important factors in human life, as it pervades' all domains of society [1] and related decision-making processes. This includes people's trust in science, and in clinical and public health solutions. Unequivocally, community and patient trust are foundational to the adoption and maintenance of health-related behaviors, social norms, and policies. Yet, trust has to be earned and developed over time and through multiple interactions. Trust is about dialogue and human connection. It's about listening and knowing that one interaction will not be enough to build trust. It is also influenced by a variety of social, economic, cultural, and political factors, past experiences, and the history of specific communities and patient groups. It should be at the core of the health and social systems with which people interact. More recently, trust in evidence-based information has also been affected by misinformation, not only on social media but also in a variety of community, institutional, and patient settings. Ultimately, we are in the midst of a global trust crisis that precedes the COVID-19 pandemic and is often rooted in the health, racial, and social inequities many groups experience [2].

Community health workers' critical role in trust building between the medical system and communities of color.

The authors interrogate elements of routine medical practice in New York City to argue for reforms of hospital culture through relational trust-building capabilities of community health workers.

Looping Genomes: Diagnostic Change and the Genetic Makeup of the Autism Population.

This article builds on Hacking's framework of "dynamic nominalism" to show how knowledge about biological etiology can interact with the "kinds of people" delineated by diagnostic categories in ways that "loop" or modify both over time. The authors use historical materials to show how "geneticization" played a crucial role in binding together autism as a biosocial community and how evidence from genetics research later made an important contribution to the diagnostic expansion of autism. In the second part of the article, the authors draw on quantitative and qualitative analyses of autism rates over time in several rare conditions that are delineated strictly according to genomic mutations in order to demonstrate that these changes in diagnostic practice helped to both increase autism's prevalence and create its enormous genetic heterogeneity. Thus, a looping process that began with geneticization and involved the social effects of genetics research itself transformed the autism population and its genetic makeup.

Limb position significantly affects safety distance during cast removal.

BACKGROUND: Unintentional cast saw injuries are attributable to casting material or improper removal technique. Another factor associated with the risk of injury is the "safety distance," the distance between the inner perimeter of the cast and the patient's skin. METHODS: Nine patients with lower leg casts around the knee/ankle were examined. Safety distance was measured using a standard depth gauge at 6-10 spots along the limb. The safety distance at each spot was measured in both supine and lateral-decubitus positions. Limb position was termed "safe" with the saw coming directly from above; a "dangerous" position was considered when the saw was coming from the side. RESULTS: The mean safety distance in the "safe position" was 17.02 mm ± 4.66 mm, compared with 14.34 mm ± 3.85 mm in the "dangerous position" (Δ = 2.7 mm; p < .0001). CONCLUSIONS: Proper positioning of a patient during cast-splitting, with the saw in the nondependent, safe aspect of the limb, can significantly increase the safety distance and minimize skin injuries.