Showing papers by "Stefan Timmermans published in 2022"
TL;DR: In this paper , the authors examine how at a time of increased family diversity, the state's use of family standards at the end-of-life discounts certain people as kin.
Abstract: Building on Max Weber’s observation that the state’s reliance on formal tools leads to governance for some and dehumanization for others, we investigate administrative standards as a social mechanism of stratification that sorts people into categories and allocates symbolic and financial resources. Specifically, we examine how at a time of increased family diversity, the state’s use of family standards at the end-of-life discounts certain people as kin. Based on ethnographic and documentary data about government’s implementation of family standards to identify next-of-kin and task them with the disposition of dead bodies, we find that the use of family standards leads to three outcomes: a formal fit between standard and family forms; a formal misfit between who is designated next-of-kin and who is willing to handle disposition, leading to bodies going unclaimed; and a formal refit, where people not officially designated as next-of-kin overcome formal barriers to disposition. Our analysis offers a conceptual framework to examine how administrative standards include and exclude people from social groups. These bureaucratic tools produce a standard-specific governable life for some, and a diverse range of oppositional effects varying from non-recognition to opportunism for the non-standardized.
4 citations
TL;DR: This paper examined the efforts of a US community of volunteers who gather to bury unclaimed, or “abandoned,” babies and found that in their efforts to mourn babies to whom they have no connection, these volunteers temporarily foster new social bonds that allow them to work through unresolved grief.
Abstract: Abstract Classic sociological theories hold that rituals offer opportunities for community integration and cohesion. Rituals allow people to come together across many differences and experience similar thoughts and feelings. Death rituals raise existential questions about the purpose of society and generally foster preexisting social ties. This paper examines the efforts of a US community of volunteers who gather to bury unclaimed, or “abandoned,” babies. Drawing on ethnographic research over a two‐year period, we advance the concept of cultural palimpsest to capture the process by which a gathering of strangers turns a potentially divisive political issue in to a community forming event. We find that in their efforts to mourn babies to whom they have no connection, these volunteers temporarily foster new social bonds that allow them to work through unresolved grief. Similar processes of ritualistically inverting social meanings occur whenever people gather to turn potentially negative into group forming events.
4 citations
TL;DR: The strategic management and communication of uncertain genomic test results with patients is discussed in the context of meeting patients' expectations and working toward genetic causality through genomic narration and designation.
Abstract: While genomic medicine is becoming an important part of patient care with an ever‐increasing diagnostic yield, communicating variants of uncertain clinical significance (VUSs) remains a major challenge. We draw on qualitative analysis of semi‐structured interviews conducted in 2020 with 20 Israeli healthcare professionals and stakeholders involved in communicating the results of genome‐wide sequencing to patients. Respondents described four main strategies of communicating VUSs to patients: preparing the patient pre‐test for uncertainty; adapting the level of detail to the patient's needs; upgrading versus downgrading the VUS; and following up on the possible reclassification of VUSs. These strategies were expressed differently by physicians and genetic counselors, varying according to their specialty and perception of the patient's situation. We discuss the strategic management and communication of uncertain genomic test results with patients in the context of meeting patients' expectations and working toward genetic causality through genomic narration and designation.
3 citations
TL;DR: In this paper , a qualitative analysis of semi-structured interviews with 22 cancer patients and individuals with cancer family history who received a VUS result was conducted to understand patient perspectives of VUSs, and the relevance of the findings to the debate on the responsibility of the patient in checking back for VUS reclassification and to implications for genetic counseling that emphasizes tailoring the pre- and post-test discussion of VUs as appropriate to the patients' informational as well as emotional needs.
Abstract: Genetic variants of uncertain significance (VUSs) pose a growing challenge for patient communication and care in precision genomic medicine. To better understand patient perspectives of VUSs, we draw on qualitative analysis of semi-structured interviews with 22 cancer patients and individuals with cancer family history who received a VUS result. The majority of patients did not recall receiving VUS results and those who remembered expressed few worries, while respondents who were tested because of a family history of cancer were more concerned about the VUS results. Personal characteristics, medical condition, family history, expectations prior to testing, and motivations for pursuing testing influence the ways patients came to terms with the uncertainty of the VUS result. We conclude by discussing the relevance of the findings to the debate on the responsibility of the patient in checking back for VUS reclassification and to implications for genetic counseling that emphasizes tailoring the pre- and post-test discussion of VUS as appropriate to the patients' informational as well as emotional needs.
2 citations
TL;DR: This article 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.
1 citations
TL;DR: Hoff et al. as mentioned in this paper show that some of the family medicine's precariousness is self-inflicted: the founders of family medicine wanted to their field to be both a general form of medical practice and a specialty.
Abstract: M anagement, health care systems, and health policy professor Timothy Hoff yearns for the past when family physicians made house calls, took time to sit with their patients, offered a one-shop medical service that included minor surgeries and mental health, and rose in their communities as civil leaders. His exemplar is Dr. Richard Rutland, the magazine Good Housekeeping’s 1981 family doctor of the year. Hoff includes countless letters written by grateful patients of the small-town Alabama physician testifying to Dr. Rutland’s dedication and friendship. Dr. Rutland signifies a mode of practicing medicine now under threat from the corporatization of health care, financial disincentives, and cheaper substitutes. Hoff shows that some of the family medicine’s precariousness is self-inflicted: the founders of family medicine wanted to their field to be both a general form of medical practice and a specialty. This made family medicine vulnerable to incursions of other medical specialties with more defined patient populations (such as obstetricians for women’s health) and cheaper labor that can take care of everyday pains and aches. Based on interviews with fifty-five family physicians and archival research, Hoff implies that family medicine produces continuity of care and deep clinical experience and that this combination benefits patient’s health. Reading between the lines, the evidence is not completely convincing. Family medicine physicians readily admitted that their colleagues laboring in small towns far from medical centers were not always the best trained or kept up with contemporary medical developments. Although family medicine might make for a warmer relationship with patients, it is unclear that these patients’ health was better than the health of those treated in other settings. It is also not clear that family medicine reduces health inequities, is cost-effective, or improves the quality of care. Sitting at a
TL;DR: In this paper , the authors examined the role of a genetic counsellor in interpreting and reducing the uncertainty of the variance of uncertain significance (VUS), mutations of which currently little is known but may turn out to be disease-causing.
Abstract: Genomic tests regularly produce Variants of Uncertain Significance (VUS), mutations of which currently little is known but may turn out to be disease-causing. The communication of such variants in the United States is typically delegated to genetic counsellors. Based on in-depth interviews, we examined this communication as an indicator of the genetic counsellor's professional status: did they take a subordinate position by reporting out the results as provided by laboratories or did they assert professional authority by interpreting and possibly reducing the uncertainty of VUS results? We found that genetic counsellors put their professional spin on VUS results and they prepared patients for the full range of possible interpretations by normalising the existence of VUS results; intervened in the ecology of testing laboratories to stack the deck in favour of the expected results; and conducted their own research to reclassify a VUS. They marshalled organisational, technical, scientific and communication expertise to ease the sting of uncertainty but were ultimately limited by their role in the counselling encounter rather than in the basic research or laboratory community. We concluded that genetic counsellors use uncertainty to assert professional authority that interpreted genetic test results in light of the patient's symptoms and risk profile and uncertainty tolerance.