RESUMO
The completion of the first draft of the Human Genome Map in 2000 was widely heralded as the promise and future of genetics-based medicines and therapies - so much so that pundits began referring to the new century as 'The Century of Genetics'. Moreover, definitive assertions about the overwhelming similarities of all humans' DNA (99.9 per cent) by the leaders of the Human Genome Project were trumpeted as the end of racial thinking about racial taxonomies of human genetic differences. But the first decade of the new century brought unwelcomed surprises. First, gene therapies turned out to be far more complicated than any had anticipated - and instead the pharmaceutical industry turned to a focus on drugs that might be 'related' to population differences based upon genetic markers. While the language of 'personalized medicine' dominated this frame, research on racially and ethnically designated populations differential responsiveness to drugs dominated the empirical work in the field. Ancestry testing and 'admixture research' would play an important role in a new kind of molecular reification of racial categories. Moreover, the capacity of the super-computer to map differences reverberated into personal identification that would affect both the criminal justice system and forensic science, and generate new levels of concern about personal privacy. Social scientists in general, and sociologists in particular, have been caught short by these developments - relying mainly on assertions that racial categories are socially constructed, regionally and historically contingent, and politically arbitrary. While these assertions are true, the imprimatur of scientific legitimacy has shifted the burden, since now 'admixture research' can claim that its results get at the 'reality' of human differentiation, not the admittedly flawed social constructions of racial categories. Yet what was missing from this framing of the problem: 'admixture research' is itself based upon socially constructed categories of race.
Assuntos
Disparidades nos Níveis de Saúde , Grupos Raciais/genética , Variação Genética , Projeto Genoma Humano/ética , Humanos , Jurisprudência , Medicina , Biologia Molecular , Ciência , Responsabilidade Social , Sociologia MédicaRESUMO
In response to the seven authors who offered comments on my paper, I have tried to synthesize and distill common themes. Foremost among them is the charge to look forward, not only to consider probable developments and implications for how this 'molecular reinscription of race' will unfold in forensics and clinical medicine, but as well to suggest how the discipline of Sociology can and should respond. But as several of the commentators noted, this is not just a matter for a single discipline, but should be fertile ground for coordinated empirical investigation by such fields as the Social Studies of Science, Anthropology of Medicine, and Critical Race Theory. For sociologically informed reasons, social scientists should be wary of the unanticipated consequences of collaboration with human molecular geneticists who come to the table deploying databases with pre-fabricated categories of race, thereby poised to provide genetic explanations of social outcomes based upon race and ethnicity. A cautionary note is provided explaining how and why some joint projects are advised, some are ill-advised.
Assuntos
Etnicidade , Grupos Raciais , Genômica , Humanos , Ciências Sociais , SociologiaRESUMO
Humans are both similar and diverse in such a vast number of dimensions that for human geneticists and social scientists to decide which of these dimensions is a worthy focus of empirical investigation is a formidable challenge. For geneticists, one vital question, of course, revolves around hypothesizing which kind of social diversity might illuminate genetic variation-and vice versa (i.e., what genetic variation illuminates human social diversity). For example, are there health outcomes that can be best explained by genetic variation-or for social scientists, are health outcomes mainly a function of the social diversity of lifestyles and social circumstances of a given population? Indeed, what is a "population," how is it bounded, and are those boundaries most appropriate or relevant for human genetic research, be they national borders, religious affiliation, ethnic or racial identification, or language group, to name but a few? For social scientists, the matter of what constitutes the relevant borders of a population is equally complex, and the answer is demarcated by the goal of the research project. Although race and caste are categories deployed in both human genetics and social science, the social meaning of race and caste as pathways to employment, health, or education demonstrably overwhelms the analytic and explanatory power of genetic markers of difference between human aggregates.
Assuntos
Pesquisa Biomédica , Variação Genética , Genética Médica , Genômica , Genótipo , Humanos , Polimorfismo de Nucleotídeo ÚnicoAssuntos
Pesquisa em Genética , Testes Genéticos/normas , Variação Genética , Genética Populacional/normas , Linhagem , Grupos Populacionais/genética , Temas Bioéticos , Bases de Dados Genéticas , Pesquisa em Genética/ética , Genética Médica , Guias como Assunto , Humanos , Política Pública , Sociedades Científicas , Estados Unidos , United States Government AgenciesRESUMO
This special issue of Studies of Science highlights ongoing debates concerning race, genomics, and disease. Some of the papers examine the production of disease etiology research, pharmaceutical drug response, or DNA genealogy tests, while others analyze institutional consequences and challenges arising from contemporary biomedicine, such as medical education and recruiting subjects for clinical research. In this introduction, we outline major issues that provide background and foreground for the specific studies that follow, and end with a brief description of the papers. First, we briefly outline the debates around contemporary genetics research on race, ancestry, population, and disease. Second, we describe genomics and disease research projects on the genetics of populations that provide the ground on which the past debates have played, as well as introduce very recent projects that may change the tenor of future debates. We discuss why some scientists argue that their research does not biologize race, while others argue that their findings do demonstrate racial differences. Finally, we relate these complex genomic sciences and their biopolitical debates to relevant STS themes.
Assuntos
Doença/genética , Genômica , Grupos Raciais/genética , Genômica/história , História do Século XX , História do Século XXI , Humanos , Grupos Raciais/históriaAssuntos
Negro ou Afro-Americano/genética , Aprovação de Drogas , Insuficiência Cardíaca/tratamento farmacológico , Insuficiência Cardíaca/genética , Hidralazina/uso terapêutico , Dinitrato de Isossorbida/uso terapêutico , Distribuição por Idade , Idoso , Antineoplásicos/uso terapêutico , Ensaios Clínicos como Assunto , Combinação de Medicamentos , Gefitinibe , Insuficiência Cardíaca/mortalidade , Humanos , Neoplasias Pulmonares/tratamento farmacológico , Pessoa de Meia-Idade , Patentes como Assunto/legislação & jurisprudência , Quinazolinas/uso terapêutico , Estados Unidos , United States Food and Drug AdministrationRESUMO
Before any citizen enters the role of scientist, medical practitioner, lawyer, epidemiologist, and so on, each and all grow up in a society in which the categories of human differentiation are folk categories that organize perceptions, relations, and behavior. That was true during slavery, during Reconstruction, the eugenics period, the two World Wars, and is no less true today. While every period understandably claims to transcend those categories, medicine, law, and science are profoundly and demonstrably influenced by the embedded folk notions of race and ethnicity.
Assuntos
Pesquisa Biomédica/história , Etnicidade , Seleção de Pacientes/ética , Preconceito , Grupos Raciais , Sociologia Médica/história , Negro ou Afro-Americano/genética , Negro ou Afro-Americano/psicologia , Antropologia Cultural/ética , Antropologia Cultural/história , Evolução Biológica , Pesquisa Biomédica/ética , Pesquisa Biomédica/legislação & jurisprudência , Direitos Civis/história , Direitos Civis/legislação & jurisprudência , Psicologia Criminal , Cultura , Análise Ética , Etnicidade/genética , Etnicidade/psicologia , Pesquisa em Genética/ética , História do Século XIX , História do Século XX , Humanos , Grupos Raciais/etnologia , Grupos Raciais/genética , Grupos Raciais/psicologia , Problemas Sociais/etnologia , Problemas Sociais/história , Sociologia Médica/ética , Estados Unidos , Violência/etnologiaRESUMO
Nutrigenomics is the study of how constituents of the diet interact with genes, and their products, to alter phenotype and, conversely, how genes and their products metabolise these constituents into nutrients, antinutrients, and bioactive compounds. Results from molecular and genetic epidemiological studies indicate that dietary unbalance can alter gene-nutrient interactions in ways that increase the risk of developing chronic disease. The interplay of human genetic variation and environmental factors will make identifying causative genes and nutrients a formidable, but not intractable, challenge. We provide specific recommendations for how to best meet this challenge and discuss the need for new methodologies and the use of comprehensive analyses of nutrient-genotype interactions involving large and diverse populations. The objective of the present paper is to stimulate discourse and collaboration among nutrigenomic researchers and stakeholders, a process that will lead to an increase in global health and wellness by reducing health disparities in developed and developing countries.
Assuntos
Genômica , Fenômenos Fisiológicos da Nutrição/fisiologia , Animais , Modelos Animais de Doenças , Ingestão de Alimentos , Meio Ambiente , Variação Genética/genética , Genoma Humano , Humanos , Cooperação Internacional , Fenótipo , PesquisaAssuntos
Bases de Dados de Ácidos Nucleicos , Genética Médica , Farmacogenética , Polimorfismo de Nucleotídeo Único , Grupos Raciais/genética , Viés , Fármacos Cardiovasculares/uso terapêutico , Crime/etnologia , Combinação de Medicamentos , Ciências Forenses , Frequência do Gene , Variação Genética , Cardiopatias/tratamento farmacológico , Cardiopatias/etnologia , Cardiopatias/genética , Humanos , Hidralazina/uso terapêutico , Hipertensão/etnologia , Hipertensão/genética , Dinitrato de Isossorbida/uso terapêutico , FenótipoRESUMO
Among biomedical scientists, there is a great deal of controversy over the nature of race, the relevance of racial categories for research, and the proper methods of using racial variables. This article argues that researchers and scholars should avoid a binary-type argument, in which the question is whether to use race always or never. Researchers should instead focus on developing standards for when and how to use racial variables. The article then discusses 1 context, criminology, in which the use of racial variables in behavioral genetics research could be particularly problematic. If genetic studies of criminalized behavior use forensic DNA databanks or forensic genetic profiles, they will be confounded by the many racial biases of the law enforcement and penal system.
Assuntos
Comportamento , Pesquisa Biomédica , Ciências Forenses , Biologia Molecular/métodos , Grupos Raciais/genética , HumanosRESUMO
In response to U.S. Public Health Service projects promoting attention to disparities in the outcomes of mental health treatments, in July 2001, the American Psychological Association, the National Institute of Mental Health, and the Fordham University Center for Ethics Education convened a group of national leaders in bioethics, multicultural research, and ethnic minority mental health to produce a living document to guide ethical decision making for mental health research involving ethnic minority children and youths. This report summarizes the key recommendations distilled from these discussions.