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1.
Science ; 366(6464): 421-422, 2019 10 25.
Article in English | MEDLINE | ID: mdl-31649182
3.
Am J Law Med ; 43(2-3): 225-238, 2017 May.
Article in English | MEDLINE | ID: mdl-29254467

ABSTRACT

"The price of culture is a Lie." 1 This Article advances a critical race approach to the health sciences by examining "culture talk" as a discursive repertoire that attributes distinct beliefs, behaviors, and dispositions to ethno-racialized groups. Culture talk entails a twofold process of obfuscation - concealing the social reality of the people it describes and hiding the positionality of those who employ cultural generalizations. After tracing how culture talk circulates and reproduces racist narratives in and beyond the health sciences, I examine how cultural competency training in medical schools and diversity initiatives in stem cell research use the idiom of culture to manage and manufacture group differences. From culturing cells in the lab to enculturing people in the clinic, I apply the concept of coproduction to argue that culture talk is a precondition and product of scientific knowledge construction.


Subject(s)
Cultural Characteristics , Race Relations , Racial Groups/ethnology , Social Justice , Stereotyping , Humans , Prejudice , Social Support , United States
4.
Genet Res (Camb) ; 98: e12, 2016 07 05.
Article in English | MEDLINE | ID: mdl-27376979

ABSTRACT

Recent advances in biological and computational technologies are changing the way different social groups imagine race, gender, kinship, citizenship and disease risk. Existing taxonomies are being displaced or reconfigured, impacting the ways in which people are governed, how lives are lived, how groups are known and how power is exercised. Herein we report on a two-day international symposium that we co-organized, titled 'The molecularization of identity: science and subjectivity in the 21st century,' that was held on 29-30 April 2016 at the Program on Science, Technology and Society, at Harvard University. The symposium drew upon the tools and expertise from multiple disciplines and diverse geographical regions and consisted of 24 original research presentations and an interdisciplinary roundtable. Specific attention was paid to the bioethical, material and lived dimensions of recent developments in molecular technologies, and discussions interrogated the complex ways in which the 'molecular realm' is an emerging site for constituting human identities in the 21st century. Herein we summarize some of the key findings of the conference and raise three further issues for practitioners and researchers to consider in relation to the broader impact of genetics research. Namely: transnational governance of emerging biotechnologies; representation of different interest groups in policy decisions; and rights of access to emerging technologies.


Subject(s)
Computational Biology/trends , Pedigree , Social Identification , Humans
5.
Ethn Health ; 16(4-5): 447-63, 2011.
Article in English | MEDLINE | ID: mdl-21797729

ABSTRACT

OBJECTIVE: This article analyzes sickle cell patient families' responses to stem cell transplant recruitment efforts. It identifies key dynamics that explain why sickle cell patient families are not undergoing stem cell transplants at the rate of other patient populations. It challenges the conventional focus on 'African-American distrust' as a set of attitudes grounded in collective memories of past abuses and projected on to current initiatives, by examining the sociality of distrust produced daily in the clinic and reinforced in broader politics of health investment. DESIGN: It draws upon a two-year multi-sited ethnography of a US-based stem cell research and cures initiative. Fieldwork included participant observation in a state stem cell agency, a publicly-funded stem cell transplant program, a sickle cell clinic, and semi-structured, open-ended interviews with caregivers and stem cell research stakeholders, all of which were subject to qualitative analysis. FINDINGS AND IMPLICATIONS: This paper finds ambivalence-in-action structured by three contextual strands: therapeutic uncertainties of the clinic, institutionalized conflation of healthcare and medical research, and political contests over scientific and medical investments. The paper posits that organized ambivalence is an analytic alternative to individualized notions of distrust and as a framework for implementing more participatory research initiatives that better account for the multiple uncertainties characteristic of regenerative medicine.


Subject(s)
Anemia, Sickle Cell/ethnology , Black or African American/psychology , Hematopoietic Stem Cell Transplantation , Patient Acceptance of Health Care/ethnology , Refusal to Participate/ethnology , Stem Cell Research , Anemia, Sickle Cell/psychology , Anemia, Sickle Cell/therapy , Attitude/ethnology , Fathers/psychology , Female , Humans , Male , Mothers/psychology , Organizational Culture , Patient Acceptance of Health Care/psychology , Politics , Refusal to Participate/psychology , Trust
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