Biosocieties最新文献_第6页

Entrepreneurial treatment activism for undone science: mannitol and Parkinson's disease. 未完成科学的创业治疗行动主义:甘露醇和帕金森病。

IF 1.6 4区医学

Biosocieties Pub Date : 2023-01-01 DOI: 10.1057/s41292-021-00258-0

Shlomo Guzmen-Carmeli, David A Rier

{"title":"Entrepreneurial treatment activism for undone science: mannitol and Parkinson's disease.","authors":"Shlomo Guzmen-Carmeli, David A Rier","doi":"10.1057/s41292-021-00258-0","DOIUrl":"https://doi.org/10.1057/s41292-021-00258-0","url":null,"abstract":"This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol-essentially, an orphan drug-as a Parkinson's disease treatment. As such, CliniCrowd addresses 'undone science', and our paper contributes to the sociological literature thereon. Based on 38 qualitative interviews, fieldwork, and content analyses (2017-2020), we trace CliniCrowd's background and rationale. We: discuss undone science and its wider contexts; present earlier iterations of citizen-science and treatment activism; examine CliniCrowd's application of crowd-sourced citizen-science to address undone science around 'orphan drug' treatment for Parkinson's disease; explore how CliniCrowd has evolved, and re-framed its work, since its founding; ponder its future; and consider whether their approach can guide future citizen-science treatment research. Our paper contributes to the existing literature in four ways. First, we focus on medical treatment issues, an under-studied area of undone science. Second, we highlight orphan drugs as both major source of, and fruitful area for research on, undone science. Third, we describe CliniCrowd's pragmatic, entrepreneurial-rather than the more common activist-citizen-science approach to addressing undone treatment science. Finally, from our data on CliniCrowd we distil a preliminary model for future treatment activism around undone science.","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"128-155"},"PeriodicalIF":1.6,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8536910/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9157741","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 1

The life and death of confidentiality: a historical analysis of the flows of patient information. 保密的生与死：对患者信息流的历史分析。

IF 1.6 4区医学

Biosocieties Pub Date : 2023-01-01 Epub Date: 2022-01-29 DOI: 10.1057/s41292-021-00269-x

Sarah Wadmann, Mette Hartlev, Klaus Hoeyer

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引用次数: 2

“It gives me time, but does it give me freedom?”: a contextual understanding of anticipatory decision-making in social egg freezing “这给了我时间，但它给了我自由吗？”：对社会卵子冷冻中预期决策的语境理解

IF 1.6 4区医学

Biosocieties Pub Date : 2022-12-31 DOI: 10.1057/s41292-022-00297-1

M. De Proost, G. Coene

引用次数: 0

Epistemology of the side effect: anecdote and evidence in the digital age 副作用的认识论:数字时代的轶事和证据

IF 1.6 4区医学

Biosocieties Pub Date : 2022-12-22 DOI: 10.1057/s41292-022-00293-5

A. Lentacker

引用次数: 0

The normal is pathological: semi-conscious brains, mindless habits, and the paradoxical science of mindfulness 正常是病态的：半意识的大脑、无意识的习惯和自相矛盾的正念科学

IF 1.6 4区医学

Biosocieties Pub Date : 2022-12-19 DOI: 10.1057/s41292-022-00292-6

Nedim Karakayali

引用次数: 0

Psychedelic innovations and the crisis of psychopharmacology 迷幻药创新与精神药理学危机

IF 1.6 4区医学

Biosocieties Pub Date : 2022-12-15 DOI: 10.1057/s41292-022-00294-4

N. Langlitz

引用次数: 3

“Black race”, “Schwarze Hautfarbe”, “Origine africaine”, or “Etnia nera”? The absent presence of race in European pharmaceutical regulation “黑人种族”、“Schwarze Hautfarbe”、“起源非洲”或“Etnia nera”？欧洲药品监管中不存在种族问题

IF 1.6 4区医学

Biosocieties Pub Date : 2022-12-14 DOI: 10.1057/s41292-022-00291-7

S. Mulinari, Anna Bredström

引用次数: 1

"The elephant in the room": social responsibility in the production of sociogenomics research. "房间里的大象"：社会基因组学研究成果中的社会责任。

IF 1.3 4区医学

Biosocieties Pub Date : 2022-12-01 Epub Date: 2021-07-03 DOI: 10.1057/s41292-021-00239-3

Daphne Oluwaseun Martschenko

{"title":"\"The elephant in the room\": social responsibility in the production of sociogenomics research.","authors":"Daphne Oluwaseun Martschenko","doi":"10.1057/s41292-021-00239-3","DOIUrl":"10.1057/s41292-021-00239-3","url":null,"abstract":"Sociogenomics examines the extent to which genetic differences between individuals relate to differences in social and economic behaviors and outcomes. The field evokes mixed reactions. For some, sociogenomics runs the risk of normalizing eugenic attitudes and legitimizing social inequalities. For others, sociogenomics brings the promise of more robust and nuanced understandings of human behavior. Regardless, a history of misuse and misapplication of genetics raises important questions about researchers' social responsibilities. This paper draws on semi-structured interviews with sociogenomics researchers who investigate intelligence and educational attainment. It does so to understand how researcher's motivations for engaging in a historically burdened field connect to their views on social responsibility and the challenges that come with it. In interviews, researchers highlighted the trade-off between engaging in socially contested research and the potential benefits their work poses to the social sciences and clinical research. They also highlighted the dilemmas of engaging with the public, including the existence of multiple publics. Finally, researchers elucidated uncertainties over what social responsibility is in practice and whether protecting against the misuse and misinterpretation of their research is wholly possible. This paper concludes by offering ways to address some of the challenges of social responsibility in the production of knowledge.","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"17 4","pages":"713-731"},"PeriodicalIF":1.3,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9754080/pdf/nihms-1775552.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10400989","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Indentured clinical labor? An indigenist standpoint view of ‘forced surrogacy’ and reproductive governance in India 契约临床分娩？印度“强迫代孕”与生殖治理的本土主义观点

IF 1.6 4区医学

Biosocieties Pub Date : 2022-10-19 DOI: 10.1057/s41292-022-00284-6

Sanghamitra Das

引用次数: 0

Agri-food tech’s building block: narrating protein, agnostic of source, in the face of crisis 农业食品技术的基石:叙述蛋白质，来源不可知论，面对危机

IF 1.6 4区医学

Biosocieties Pub Date : 2022-10-19 DOI: 10.1057/s41292-022-00287-3

J. Guthman, Charlotte Biltekoff

引用次数: 2