Sandra Soo-Jin Lee
Datos Biográficos
| ID | 85850 |
|---|---|
| NOMBRE | Sandra Soo-Jin Lee |
| NOMBRES | Sandra Soo-Jin |
| APELLIDO | Lee |
| FIRMA | LEE S S |
| AFILIACIONES | Stanford University |
| ORCID | 0000-0002-2312-9814 |
| VERIFICADO | Sí |
| TOTAL DE OBRAS | 27 |
| TOTAL DE CITAS | 117 |
| TOTAL COMO AUTOR | 27 |
| TOTAL COMO EDITOR | 0 |
| PRIMER AÑO DE PUBLICACIÓN | 2000 |
| AÑO MÁS RECIENTE DE PUBLICACIÓN | 2025 |
| ÍNDICE H | 7 |
Understanding individualised genetic interventions as research-treatment hybrids
Until recently, medicine has had little to offer most of the millions of patients suffering from rare and ultrarare genetic conditions. But the development in 2019 of Milasen, the first genetic intervention developed for and administered to a single patient suffering from an ultrarare genetic disorder, has offered hope to patients and families. In addition, Milasen raised a series of conceptual and ethical questions about how individualised genet…
Expanding the Agenda for a More Just Genomics
The integration of genomics into public health and medicine is happening at a faster rate than the accrual of the capabilities necessary to ensure the equitable, global distribution of its clinical benefits. Uneven access to genetic testing and follow‐up care, unequal distribution of the resources required to access and participate in research, and underrepresentation of some descent groups in genetic and clinical datasets (and thus uncertain gen…
A conjunctural analysis of the origins of ‘embedded Elsi’ in U.S. genomic medicine
Calls to identify, explore, and address ethical and social issues as part of the design and implementation of scientific research are now widespread. One way of doing so is through an embedded approach, where ethical, legal, and social implications (ELSI) researchers are situated within larger scientific research studies. We trace the emergence of the ‘embedded ELSI’ approach to integration alongside the development of genomic medicine. In partic…
Marginalized measures
The production of large, shareable datasets is increasingly prioritized for a wide range of research purposes. In biomedicine, especially in the United States, calls to enhance representation of historically underrepresented populations in databases that integrate genomic, health history, demographic and lifestyle data have also increased in order to support the goals of precision medicine. Understanding the assumptions and values that shape the …
Editors and Authors
Wrestling with Public Input on an Ethical Analysis of Scientific Research
Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and migh…
Wrestling with Social and Behavioral Genomics
In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and poten…
Strategies of inclusion
US funding agencies have begun to institutionalize expectations that biomedical studies achieve defined thresholds for diversity among research participants, including in precision medicine research (PMR). In this paper, we examine how practices of recruitment have unfolded in the wake of these diversity mandates. We find that a very common approach to seeking diverse participants leverages understandings of spatial, geographic, and site diversit…
Neighborhood Contexts and Breast Cancer Among Asian American Women
Who is the Right Fit
The growing field of clinical and translational science (CTS) is located at the intersection of academic medicine and industry, sectors that share histories of exclusion and efforts to become more diverse. Indeed, diversity and inclusion of a broad range of experts and backgrounds are believed to be critical to continuous innovation and the growth of the US health industry. But despite an increasing emphasis on diversity in CTS research, and the …
Excavating the Personal Genome
The rise of genomic technologies has catalyzed shifts in the health care landscape through the commercialization of genome sequencing and testing services in the genomics marketplace. The development of consumer genomics into a growing array of information technologies aimed at collecting, curating, and broadly sharing personal data and biological materials reconstitutes the meaning of health and reframes patients into biocitizens. In this contex…
The Ethics of Translational Science
Biomedical research is increasingly informed by expectations of “translation,” which call for the production of scientific knowledge that can be used to create services and products that improve health outcomes. In this paper, we ask how translation, in particular the idea of social responsibility, is understood and enacted in the post-genomic life sciences. Drawing on theories examining what constitutes “good science,” and interviews with 35 inv…
Consuming DNA
The convergence of increasingly efficient high-throughput genetic sequencing technology and ubiquitous Internet use has fueled the proliferation of companies that provide direct-to-consumer (DTC) personal genetic information. The emergence of consumer genetics reflects several shifts in the governance of genetic testing and management of human genetic data. This article discusses DTC genetics as a case study of neoliberalism and contemporary tran…
Strategies for recruiting representative samples of Asian Americans for a population-based case–control study
BACKGROUND: Data are limited on effective methods for recruiting persons, especially from ethnically diverse populations, into population-based studies. The goal of this study was to evaluate the variation among and representativeness of controls identified using multiple methods for a population-based case-control study of breast cancer among Asian Americans, Native Hawaiians and Pacific Islanders (AANHPIs) in the San Francisco Bay Area. METHODS…
Accounting for Complexity
Scientists now agree that common diseases arise through interactions of genetic and environmental factors, but there is less agreement about how scientific research should account for these interactions. This paper examines the politics of quantification in gene-environment interaction (GEI) research. Drawing on interviews and observations with GEI researchers who study common, complex diseases, we describe quantification as an unfolding moral ec…
Enacting the molecular imperative
Direct-to-Consumer Personal Genetic Testing
The Biobank as Political Artifact
This article discusses the institutional practices of classifying and creating taxonomies of difference within biobanks (repositories that store a broad range of biological materials, including DNA) and the technical and sociopolitical priorities that ultimately create biobanks. I argue that biobanks operate as political artifacts and that the social circumstances surrounding the development and use of biobanks determine what counts as meaningful…
Theories of Race and Ethnicity
How have research agendas on race and ethnic relations changed over the past two decades and what new developments have emerged? Theories of Race and Ethnicity provides a comprehensive and cutting-edge collection of theoretically grounded and empirically informed essays. It covers a range of key issues in race and ethnicity studies, such as genetics and race, post-race debates, racial eliminativism and the legacy of Barack Obama, and mixed race i…
Homogeneity and heterogeneity as situational properties
In this article, we explore current thinking and practices around the logics of difference in gene-environment interaction research in the post-genomic era. We find that scientists conducting gene-environment interaction research continue to invoke well-worn notions of racial difference and diversity, but use them strategically to try to examine other kinds of etiologically significant differences among populations. Scientists do this by seeing p…
Race and Ancestry in the Age of Inclusion
This article examines how race and ancestry are taken up in gene-environment interaction (GEI) research on complex diseases such as heart disease, diabetes, and cancer. Using 54 in-depth interviews of 33 scientists and over 200 hours of observation at scientific conferences, we explore how GEI researchers use and interpret race, ethnicity, and ancestry in their work. We find that the use of self-identified race and ethnicity (SIRE) exists alongsi…
Race, Risk, and Recreation in Personal Genomics
Despite the mantra that genetics has moved beyond race, the burgeoning industry of genetic ancestry reveals how genetics has offered new technology through which individuals can link to intersections in time and space in complex ways that recapitulate understandings of racial order, origins, and group membership. This article focuses on the trope of "recreation" asserted in the marketing of ancestry genetic tests and examines the suggestion of se…
American DNA
As genotyping technologies have precipitously decreased in cost since the completion of the Human Genome Project, personal genetic testing has increasingly been marketed to consumers. Genetic testing is now available for an ever-expanding list of genetic mutations associated with diseases-including breast cancer, Parkinson's, and Alzheimer's-as well as traits such as ancestry, intelligence, and athleticism. Close examination of the direct-to-cons…
The Nature of Race
Biobanks of a ‘racial kind’
While social scientists have argued that race emerges through a historically grounded context and is best understood as fluid and reactive to historical and political conditions, genetics and the search for differences revisit notions of race as embedded in the physical body. Lee argues that DNA repositories maintain both physical and symbolic space for notions of genetic essence among human groups whereby ‘race’ is framed as a natural kind. She …
Enacting the molecular imperative
Race, Risk, and Recreation in Personal Genomics
Despite the mantra that genetics has moved beyond race, the burgeoning industry of genetic ancestry reveals how genetics has offered new technology through which individuals can link to intersections in time and space in complex ways that recapitulate understandings of racial order, origins, and group membership. This article focuses on the trope of "recreation" asserted in the marketing of ancestry genetic tests and examines the suggestion of se…
Homogeneity and heterogeneity as situational properties
In this article, we explore current thinking and practices around the logics of difference in gene-environment interaction research in the post-genomic era. We find that scientists conducting gene-environment interaction research continue to invoke well-worn notions of racial difference and diversity, but use them strategically to try to examine other kinds of etiologically significant differences among populations. Scientists do this by seeing p…
Racializing Drug Design
Current practices of using “race” in pharmacogenomics research demands consideration of the ethical and social implications for understandings of group difference and for efforts to eliminate health disparities. This discussion focuses on an “infrastructure of racialization” created by current trajectories of research on genetic differences among racially identified groups, the use of race as a proxy for risk in clinical practice, and increasing …
Dys-appearing Tongues and Bodily Memories
According to Bourdieu's thesis on habitus, codes of behavior are "memorized" and incorporated by the body, becoming the repertoire of culturally appropriated bodily behaviors.Building on this model, immigrant subjectivity with respect to aging is examined through the concept of bodily memory. I focus here on the negotiation of colonial history, diasporic consciousness, and cultural practice by first-generation resident Koreans of Japan. This pape…
American DNA
As genotyping technologies have precipitously decreased in cost since the completion of the Human Genome Project, personal genetic testing has increasingly been marketed to consumers. Genetic testing is now available for an ever-expanding list of genetic mutations associated with diseases-including breast cancer, Parkinson's, and Alzheimer's-as well as traits such as ancestry, intelligence, and athleticism. Close examination of the direct-to-cons…
Consuming DNA
The convergence of increasingly efficient high-throughput genetic sequencing technology and ubiquitous Internet use has fueled the proliferation of companies that provide direct-to-consumer (DTC) personal genetic information. The emergence of consumer genetics reflects several shifts in the governance of genetic testing and management of human genetic data. This article discusses DTC genetics as a case study of neoliberalism and contemporary tran…
Accounting for Complexity
Scientists now agree that common diseases arise through interactions of genetic and environmental factors, but there is less agreement about how scientific research should account for these interactions. This paper examines the politics of quantification in gene-environment interaction (GEI) research. Drawing on interviews and observations with GEI researchers who study common, complex diseases, we describe quantification as an unfolding moral ec…
Race and Ancestry in the Age of Inclusion
This article examines how race and ancestry are taken up in gene-environment interaction (GEI) research on complex diseases such as heart disease, diabetes, and cancer. Using 54 in-depth interviews of 33 scientists and over 200 hours of observation at scientific conferences, we explore how GEI researchers use and interpret race, ethnicity, and ancestry in their work. We find that the use of self-identified race and ethnicity (SIRE) exists alongsi…
Biobanks of a ‘racial kind’
While social scientists have argued that race emerges through a historically grounded context and is best understood as fluid and reactive to historical and political conditions, genetics and the search for differences revisit notions of race as embedded in the physical body. Lee argues that DNA repositories maintain both physical and symbolic space for notions of genetic essence among human groups whereby ‘race’ is framed as a natural kind. She …
Strategies of inclusion
US funding agencies have begun to institutionalize expectations that biomedical studies achieve defined thresholds for diversity among research participants, including in precision medicine research (PMR). In this paper, we examine how practices of recruitment have unfolded in the wake of these diversity mandates. We find that a very common approach to seeking diverse participants leverages understandings of spatial, geographic, and site diversit…
The Biobank as Political Artifact
This article discusses the institutional practices of classifying and creating taxonomies of difference within biobanks (repositories that store a broad range of biological materials, including DNA) and the technical and sociopolitical priorities that ultimately create biobanks. I argue that biobanks operate as political artifacts and that the social circumstances surrounding the development and use of biobanks determine what counts as meaningful…
Marginalized measures
The production of large, shareable datasets is increasingly prioritized for a wide range of research purposes. In biomedicine, especially in the United States, calls to enhance representation of historically underrepresented populations in databases that integrate genomic, health history, demographic and lifestyle data have also increased in order to support the goals of precision medicine. Understanding the assumptions and values that shape the …
The Nature of Race
Dys-appearing Tongues and Bodily Memories
According to Bourdieu's thesis on habitus, codes of behavior are "memorized" and incorporated by the body, becoming the repertoire of culturally appropriated bodily behaviors.Building on this model, immigrant subjectivity with respect to aging is examined through the concept of bodily memory. I focus here on the negotiation of colonial history, diasporic consciousness, and cultural practice by first-generation resident Koreans of Japan. This pape…
Racializing Drug Design
Current practices of using “race” in pharmacogenomics research demands consideration of the ethical and social implications for understandings of group difference and for efforts to eliminate health disparities. This discussion focuses on an “infrastructure of racialization” created by current trajectories of research on genetic differences among racially identified groups, the use of race as a proxy for risk in clinical practice, and increasing …
Biobanks of a ‘racial kind’
While social scientists have argued that race emerges through a historically grounded context and is best understood as fluid and reactive to historical and political conditions, genetics and the search for differences revisit notions of race as embedded in the physical body. Lee argues that DNA repositories maintain both physical and symbolic space for notions of genetic essence among human groups whereby ‘race’ is framed as a natural kind. She …
The Nature of Race
Race, Risk, and Recreation in Personal Genomics
Despite the mantra that genetics has moved beyond race, the burgeoning industry of genetic ancestry reveals how genetics has offered new technology through which individuals can link to intersections in time and space in complex ways that recapitulate understandings of racial order, origins, and group membership. This article focuses on the trope of "recreation" asserted in the marketing of ancestry genetic tests and examines the suggestion of se…
American DNA
As genotyping technologies have precipitously decreased in cost since the completion of the Human Genome Project, personal genetic testing has increasingly been marketed to consumers. Genetic testing is now available for an ever-expanding list of genetic mutations associated with diseases-including breast cancer, Parkinson's, and Alzheimer's-as well as traits such as ancestry, intelligence, and athleticism. Close examination of the direct-to-cons…
Theories of Race and Ethnicity
How have research agendas on race and ethnic relations changed over the past two decades and what new developments have emerged? Theories of Race and Ethnicity provides a comprehensive and cutting-edge collection of theoretically grounded and empirically informed essays. It covers a range of key issues in race and ethnicity studies, such as genetics and race, post-race debates, racial eliminativism and the legacy of Barack Obama, and mixed race i…
Homogeneity and heterogeneity as situational properties
In this article, we explore current thinking and practices around the logics of difference in gene-environment interaction research in the post-genomic era. We find that scientists conducting gene-environment interaction research continue to invoke well-worn notions of racial difference and diversity, but use them strategically to try to examine other kinds of etiologically significant differences among populations. Scientists do this by seeing p…
Race and Ancestry in the Age of Inclusion
This article examines how race and ancestry are taken up in gene-environment interaction (GEI) research on complex diseases such as heart disease, diabetes, and cancer. Using 54 in-depth interviews of 33 scientists and over 200 hours of observation at scientific conferences, we explore how GEI researchers use and interpret race, ethnicity, and ancestry in their work. We find that the use of self-identified race and ethnicity (SIRE) exists alongsi…
Direct-to-Consumer Personal Genetic Testing
The Biobank as Political Artifact
This article discusses the institutional practices of classifying and creating taxonomies of difference within biobanks (repositories that store a broad range of biological materials, including DNA) and the technical and sociopolitical priorities that ultimately create biobanks. I argue that biobanks operate as political artifacts and that the social circumstances surrounding the development and use of biobanks determine what counts as meaningful…
Strategies for recruiting representative samples of Asian Americans for a population-based case–control study
BACKGROUND: Data are limited on effective methods for recruiting persons, especially from ethnically diverse populations, into population-based studies. The goal of this study was to evaluate the variation among and representativeness of controls identified using multiple methods for a population-based case-control study of breast cancer among Asian Americans, Native Hawaiians and Pacific Islanders (AANHPIs) in the San Francisco Bay Area. METHODS…
Accounting for Complexity
Scientists now agree that common diseases arise through interactions of genetic and environmental factors, but there is less agreement about how scientific research should account for these interactions. This paper examines the politics of quantification in gene-environment interaction (GEI) research. Drawing on interviews and observations with GEI researchers who study common, complex diseases, we describe quantification as an unfolding moral ec…
Enacting the molecular imperative
The Ethics of Translational Science
Biomedical research is increasingly informed by expectations of “translation,” which call for the production of scientific knowledge that can be used to create services and products that improve health outcomes. In this paper, we ask how translation, in particular the idea of social responsibility, is understood and enacted in the post-genomic life sciences. Drawing on theories examining what constitutes “good science,” and interviews with 35 inv…
Consuming DNA
The convergence of increasingly efficient high-throughput genetic sequencing technology and ubiquitous Internet use has fueled the proliferation of companies that provide direct-to-consumer (DTC) personal genetic information. The emergence of consumer genetics reflects several shifts in the governance of genetic testing and management of human genetic data. This article discusses DTC genetics as a case study of neoliberalism and contemporary tran…
Who is the Right Fit
The growing field of clinical and translational science (CTS) is located at the intersection of academic medicine and industry, sectors that share histories of exclusion and efforts to become more diverse. Indeed, diversity and inclusion of a broad range of experts and backgrounds are believed to be critical to continuous innovation and the growth of the US health industry. But despite an increasing emphasis on diversity in CTS research, and the …
Excavating the Personal Genome
The rise of genomic technologies has catalyzed shifts in the health care landscape through the commercialization of genome sequencing and testing services in the genomics marketplace. The development of consumer genomics into a growing array of information technologies aimed at collecting, curating, and broadly sharing personal data and biological materials reconstitutes the meaning of health and reframes patients into biocitizens. In this contex…
Neighborhood Contexts and Breast Cancer Among Asian American Women
Strategies of inclusion
US funding agencies have begun to institutionalize expectations that biomedical studies achieve defined thresholds for diversity among research participants, including in precision medicine research (PMR). In this paper, we examine how practices of recruitment have unfolded in the wake of these diversity mandates. We find that a very common approach to seeking diverse participants leverages understandings of spatial, geographic, and site diversit…
Editors and Authors
Wrestling with Public Input on an Ethical Analysis of Scientific Research
Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and migh…
Wrestling with Social and Behavioral Genomics
In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and poten…
Expanding the Agenda for a More Just Genomics
The integration of genomics into public health and medicine is happening at a faster rate than the accrual of the capabilities necessary to ensure the equitable, global distribution of its clinical benefits. Uneven access to genetic testing and follow‐up care, unequal distribution of the resources required to access and participate in research, and underrepresentation of some descent groups in genetic and clinical datasets (and thus uncertain gen…
A conjunctural analysis of the origins of ‘embedded Elsi’ in U.S. genomic medicine
Calls to identify, explore, and address ethical and social issues as part of the design and implementation of scientific research are now widespread. One way of doing so is through an embedded approach, where ethical, legal, and social implications (ELSI) researchers are situated within larger scientific research studies. We trace the emergence of the ‘embedded ELSI’ approach to integration alongside the development of genomic medicine. In partic…
Sociology (16 obras) · Biology (14 obras) · Political science (14 obras) · Ethics in Clinical Research (12 obras) · Psychology (12 obras) · Race, Genetics, and Society (11 obras) · Genetics (10 obras) · Biomedical Ethics and Regulation (9 obras) · Genetics (9 obras) · Law (9 obras)