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This article engages with problems that are usually opaque: What trajectories do scientific debates assume, when does a scientific community consider a proposition to be a fact, and how can we know that? We develop a strategy for evaluating the state of scientific contestation on issues. The analysis builds from Latour's black box imagery, which we observe in scientific citation networks. We show that as consensus forms, the importance of internal divisions to the overall network structure declines. We consider substantive cases that are now considered facts, such as the carcinogenicity of smoking and the non-carcinogenicity of coffee. We then employ the same analysis to currently contested cases: the suspected carcinogenicity of cellular phones, and the relationship between vaccines and autism. Extracting meaning from the internal structure of scientific knowledge carves a niche for renewed sociological commentary on science, revealing a typology of trajectories that scientific propositions may experience en route to consensus.
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Contemporary calls for participatory research raise unique ethical questions. Our semi-participatory mixed-methodology study of the needs of autistic adults in Israel utilized an advisory committee of autistic persons. This article discusses three fundamental ethical issues that emerged in the study. First, employing formal diagnosis and legal guardian approval as inclusion criteria may result in the unjust exclusion of self-diagnosed autistics and those who are cognitively able to consent and participate. Second, adopting a participatory research approach does not in itself guarantee participatory justice; the representation of diverse groups from the community must be ensured. Finally, regarding autism spectrum disorder (ASD) as a medical diagnosis requires indisputable confidentiality which may conflict with the personal choice to waive anonymity and be recognized by name. Researchers and ethical committees should take these ethical challenges into account when conducting and reviewing studies with and about autistic adults.
Assuntos
Transtorno do Espectro Autista , Temas Bioéticos , Pesquisa Participativa Baseada na Comunidade/ética , Confidencialidade/ética , Consentimento Livre e Esclarecido/ética , Adulto , Transtorno Autístico , Ética em Pesquisa , Humanos , Israel , Competência Mental , Justiça SocialRESUMO
How can genetics reshape nosology? This paper examines the way knowledge about a genetic mutation - the microdeletion at chromosomal locus 22q11.2 - transformed our understanding of several rare clinical syndromes and designated a qualitatively new population of patients. Taking the 1400 papers about the 22q11.2 deletion and the clinical conditions with which it was associated, we generate a network of papers tied by citations for each of the last 35 years. Using a modularity algorithm, we identify communities and evaluate their salience for the networks' overall structure. This analysis, supplemented by historical research and fieldwork with relevant experts and the advocates of affected children conducted during 2011-12, reveals that the 22q11.2 deletion acted as a 'boundary object' that unified clinical literatures and led to the emergence of a new kind of medical condition: 22q11.2 Deletion Syndrome (DS). The case of 22q11.2DS extends our understanding of 'genomic designation' - the delineation and diagnosis of clinically diffuse conditions according to characteristics of the genome - and demonstrates that observations from genetics can reconfigure existing categories of biomedical research and lead to the emergence of qualitatively new diagnostic categories.
Assuntos
Deleção Cromossômica , Cromossomos Humanos Par 22/genética , Síndrome de DiGeorge , Pesquisa Biomédica , HumanosRESUMO
It is often asserted that the gender gap in educational attainment is larger for blacks than whites, but historical trends comparing the black and white gender gap have received surprisingly little attention. Analysis of historical data from the U.S. census IPUMS samples shows that the gender gap in college completion has evolved differently for whites and blacks. Historically, the female advantage in educational attainment among blacks is linked to more favorable labor market opportunities and stronger incentives for employment for educated black women. Blacks, particularly black males, still lag far behind whites in their rates of college completion, but the striking educational gains of white women have caused the racial patterns of gender differences in college completion rates to grow more similar over time. While some have linked the disadvantaged position of black males to their high risk of incarceration, our estimates suggest that incarceration has a relatively small impact on the black gender gap and the racial gap in college completion rates for males in the United States.