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1.
Cell ; 186(5): 894-898, 2023 03 02.
Article in English | MEDLINE | ID: mdl-36724788

ABSTRACT

Trustworthy science requires research practices that center issues of ethics, equity, and inclusion. We announce the Leadership in the Equitable and Ethical Design (LEED) of Science, Technology, Mathematics, and Medicine (STEM) initiative to create best practices for integrating ethical expertise and fostering equitable collaboration.


Subject(s)
Leadership , Technology , Mathematics
3.
Perspect Biol Med ; 66(2): 225-248, 2023.
Article in English | MEDLINE | ID: mdl-37755714

ABSTRACT

A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on rule following, the framework is designed to build researchers' capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers' intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these principles, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the proposed framework.

4.
Am Nat ; 200(1): 101-113, 2022 07.
Article in English | MEDLINE | ID: mdl-35737982

ABSTRACT

AbstractEvolutionary biology and many of its foundational concepts are grounded in a history of ableism and eugenics. The field has not made a concerted effort to divest our concepts and investigative tools from this fraught history, and as a result, an ableist investigative lens has persisted in present-day evolutionary research, limiting the scope of research and harming the ability to communicate and synthesize knowledge about evolutionary processes. This failure to divest from our eugenicist and ableist history has harmed progress in evolutionary biology and allowed principles from evolutionary biology to continue to be weaponized against marginalized communities in the modern day. To rectify this problem, scholars in evolutionary research must come to terms with how the history of the field has influenced their investigations and work to establish a new framework for defining and investigating concepts such as selection and fitness.


Subject(s)
Biological Evolution , Biology , Social Discrimination
5.
Am J Phys Anthropol ; 175(2): 387-398, 2021 06.
Article in English | MEDLINE | ID: mdl-32986847

ABSTRACT

OBJECTIVES: Our aim in this study was to understand how genetics ideas are appropriated and mobilized online toward the political projects of White nationalism and the alt right. Studying three different online venues, we investigated how genetics is used to support racial realism, hereditarianism, and racial hierarchy. We analyzed how these ideas are connected to political and metapolitical projects. In addition, we examined the strategies used to build authority for these interpretations. METHODS: We analyze three online venues in which genetics has been mobilized to advance racial realism and hereditarian explanations of racial differences. These were (a) the use of genetic ancestry tests in online nationalist discussions, (b) blogs and other venues in which the human biodiversity ideas are articulated, (c) activities surrounding the OpenPsych collection of online journals. Ethnographic and interpretive methods were applied to investigate scientific and political meanings of efforts to mobilize genetic ideas. RESULTS: We found that White nationalists use genetic ancestry tests to align White identity with ideas of racial purity and diversity, educating each other about genetics, and debating the boundaries of Whiteness. "Human biodiversity" has been mobilized as a movement to catalog and create hereditarian ideas about racial differences and to distribute them as "red pills" to transform online discourse. The OpenPsych journals have allowed amateur hereditarian psychologists to publish papers, coordinate activity, and legitimate their project at the academic margins. CONCLUSIONS: These various appropriations of genetics aim to further racial realism and hereditarian explanations of racial social and behavioral differences. Beyond these substantive aims, on a "metapolitical" level, they serve to reframe concepts and standards for political and scientific discussion of race, challenge structures of academic legitimacy and expertise, and build a cadre of ideological foot soldiers armed with an argumentative toolkit. As professional anthropologists and geneticists aim to accurately communicate their science and its implications for understanding human differences to the public, they must contend with these substantive claims and metapolitical contexts.


Subject(s)
Anthropology, Physical , Human Genetics , Racism , Science , White People , Biodiversity , Humans , Political Systems
6.
Hastings Cent Rep ; 45(5 Suppl): S43-9, 2015.
Article in English | MEDLINE | ID: mdl-26413948

ABSTRACT

For much of its history, behavioral genetics, or research into the influence genetics has on human behavior, has been associated with a pessimistic view of educational reforms' potential to make much difference in improving educational outcomes or reducing inequality. Recently, however, some behavioral geneticists have begun to speak in more optimistic terms about the promise of genetically informed education to improve learning for all children, especially those who are socially or economically disadvantaged. This shift in emphasis should be welcome news for everyone interested in promoting educational improvement who worried that behavioral genetics offered support for the status quo. However, I think it amounts to little more than a shift in tone. Behavioral genetics, I will argue, does not advance educational reform: its proposed solutions are rooted in the limits, not the strength, of behavioral genetics knowledge; repeat the ideas of earlier U.S. educational reform efforts; and rely on a naive optimism about the power of choice and personalization.


Subject(s)
Choice Behavior , Educational Measurement , Genetics, Behavioral , Intelligence , Teaching , Child , Genetics, Behavioral/methods , Genetics, Behavioral/trends , Humans , Intelligence/genetics , Intelligence Tests , Precision Medicine , Social Sciences/trends
7.
Public Underst Sci ; : 9636625241228160, 2024 Feb 27.
Article in English | MEDLINE | ID: mdl-38414099

ABSTRACT

This article demonstrates-based on an interpretive discourse analysis of three types of memes (Rabid Feminists, Women's Bodies, Policy Ideas) and secondary thread discourse on 4chan's "Politically Incorrect" discussion board-two key findings: (1) the existence of a gendered hate based scientific discourse, "science fan fiction," in online spaces and (2) how gender "science fan fiction" is an outcome of the male supremacist cosmology, by producing and justifying resentment against white women as being both inherently untrustworthy (politically, sexually, intellectually) and dangerous. This perspective-which combines hatred and distrust of women with white nationalist anxieties about demographic shifts, racial integrity, and sexuality-then motivates misogynist policy ideas including total domination of women or their removal. 4chan users employ this discourse to "scientifically" substantiate claims of white male supremacy, the fundamental untrustworthiness of white women, and to argue white women's inherent threat to white male supremacist goals.

9.
Health Equity ; 7(1): 793-802, 2023.
Article in English | MEDLINE | ID: mdl-38076215

ABSTRACT

There is growing attention to how unfounded beliefs about biological differences between racial groups affect biomedical research and health care, in part, through race adjustment in clinical tools. We develop a case study of the Eighth Joint National Committee (JNC 8)'s 2014 Evidence-Based Guideline for the Management of High Blood Pressure in Adults, which recommends a distinct initial hypertension treatment for Black versus nonblack patients. We analyze the historical context, study design, and racialized findings of the Antihypertensive and Lipid-Lowering Treatment to Prevent Heart Attack Trial (ALLHAT) that informed development of the guideline. We argue that ALLHAT's racialized outcomes emanated from a poor and artificial study design and analysis weakened by implicit assumptions about race as biological. We show that the acceptance and utilization of ALLHAT for race correction arises from its historical context within the "inclusion-and-difference paradigm" and its indication of the inefficacy of angiotensin-converting-enzyme inhibitors for Black patients, which follows from the enduring, yet, refuted slavery hypertension hypothesis. We demonstrate that the JNC 8 guideline displays the self-fulfilling process of racial reasoning: presuppositions about racial differences inform the design and interpretation of research, which then conceptually reinforce ideas about racial differences leading to differential medical treatment. We advocate for the abolition of race adjustment and the integration of structural competency, biocritical inquiry, and race-conscious medicine into biomedical research and clinical medicine to disrupt the use of race as a proxy for ancestry, environment, and social treatment and to address the genuine determinants of racialized disparities in hypertension.

10.
Front Genet ; 14: 1044555, 2023.
Article in English | MEDLINE | ID: mdl-36755575

ABSTRACT

Background: Ancestry is often viewed as a more objective and less objectionable population descriptor than race or ethnicity. Perhaps reflecting this, usage of the term "ancestry" is rapidly growing in genetics research, with ancestry groups referenced in many situations. The appropriate usage of population descriptors in genetics research is an ongoing source of debate. Sound normative guidance should rest on an empirical understanding of current usage; in the case of ancestry, questions about how researchers use the concept, and what they mean by it, remain unanswered. Methods: Systematic literature analysis of 205 articles at least tangentially related to human health from diverse disciplines that use the concept of ancestry, and semi-structured interviews with 44 lead authors of some of those articles. Results: Ancestry is relied on to structure research questions and key methodological approaches. Yet researchers struggle to define it, and/or offer diverse definitions. For some ancestry is a genetic concept, but for many-including geneticists-ancestry is only tangentially related to genetics. For some interviewees, ancestry is explicitly equated to ethnicity; for others it is explicitly distanced from it. Ancestry is operationalized using multiple data types (including genetic variation and self-reported identities), though for a large fraction of articles (26%) it is impossible to tell which data types were used. Across the literature and interviews there is no consistent understanding of how ancestry relates to genetic concepts (including genetic ancestry and population structure), nor how these genetic concepts relate to each other. Beyond this conceptual confusion, practices related to summarizing patterns of genetic variation often rest on uninterrogated conventions. Continental labels are by far the most common type of label applied to ancestry groups. We observed many instances of slippage between reference to ancestry groups and racial groups. Conclusion: Ancestry is in practice a highly ambiguous concept, and far from an objective counterpart to race or ethnicity. It is not uniquely a "biological" construct, and it does not represent a "safe haven" for researchers seeking to avoid evoking race or ethnicity in their work. Distinguishing genetic ancestry from ancestry more broadly will be a necessary part of providing conceptual clarity.

11.
Theory Soc ; 51(4): 595-627, 2022 Jul.
Article in English | MEDLINE | ID: mdl-36743837

ABSTRACT

When studying science contexts, scholars typically position charismatic authority as an adjunct or something that provides a meaning-laden boost to rational authority. In this paper, we re-theorize these relationships. We re-center charismatic authority as an interpretive resource that allows scientists and onlookers to recast a professional conflict in terms of a public drama. In this mode, both professionals and lay enthusiasts portray involvement in the scientific process as a story of suppression and persecution, in which only a few remarkable figures can withstand scrutiny and take on challengers with dignity. Description and elaboration of these figures and the folklore surrounding them sets in motion the interpretive processes by which some actors become charismatic leaders and others charismatic followers within science, ultimately providing alternative symbolic resources for an embattled research agenda to accrue legitimacy. To illustrate, we use the case of Arthur Jensen - a deceased intelligence researcher and the intellectual father to contemporary texts like The Bell Curve - and the circles of hero worship that admirers inside and outside academia have created to praise him. Using this perspective to study Jensen and his admirers demonstrates how the perennial race and intelligence debates gain a kind of symbolic power, unrelated to their scientific merit or racist appeal, which enables such debates to thrive and persist in the public sphere. More generally, our approach identifies contemporary processes by which scientific ideas can gain public authority even when their intellectual merit has been deemed dubious.

13.
Soc Stud Sci ; 41(1): 31-57, 2011 Feb.
Article in English | MEDLINE | ID: mdl-21553639

ABSTRACT

This paper examines how patient advocacy organizations (PAOs) representing those with rare genetic disorders drive research to their concerns. The rarity of the diseases produces a basic condition of marginalization: small numbers of widely distributed disease sufferers. The lack of promise of an eventual market makes it difficult to attract the economic and biological resources necessary for sustained research. My analysis relies mainly on 21 interviews with leaders from nine PAOs and scientists involved with them, and seeks to understand how PAOs try to attract and influence scientific research. Using a comparative framework, I find that the five main mechanisms emphasized in the literature--economic resources, social movement-style mobilization, moving early, lay expertise, and organizational controls--cannot fully explain the differences in strategies and relationships among members of my PAO sample. I propose instead to show how 'sociability'--forging close relationships with scientists and orchestrating relationships among them--enables PAOs to drive research to their concerns. I show how the strategic manipulation of sociability can give PAOs substantial influence over the research process. However, the forms of sociability that yield the greatest effects are difficult to achieve, and most forms of relationship-building offer PAOs much less influence on research.


Subject(s)
Genetic Research , Interpersonal Relations , Patient Advocacy , Rare Diseases , Humans , Interprofessional Relations , Rare Diseases/economics , Research Support as Topic , United States
14.
Science ; 373(6562): 1449, 2021 Sep 24.
Article in English | MEDLINE | ID: mdl-34554805

ABSTRACT

The tenuous portability of polygenic scores undermines an attempt to link genetics and justice.

15.
Soc Stud Sci ; 51(4): 583-605, 2021 08.
Article in English | MEDLINE | ID: mdl-33764246

ABSTRACT

A series of failed replications and frauds have raised questions regarding self-correction in science. Metascientific activists have advocated policies that incentivize replications and make them more diagnostically potent. We argue that current debates, as well as research in science and technology studies, have paid little heed to a key dimension of replication practice. Although it sometimes serves a diagnostic function, replication is commonly motivated by a practical desire to extend research interests. The resulting replication, which we label 'integrative', is characterized by a pragmatic flexibility toward protocols. The goal is to appropriate what is useful, not test for truth. Within many experimental cultures, however, integrative replications can produce replications of ambiguous diagnostic power. Based on interviews with 60 members of the Board of Reviewing Editors for the journal Science, we show how the interplay between the diagnostic and integrative motives for replication differs between fields and produces different cultures of replication. We offer six theses that aim to put science and technology studies and science activism into dialog to show why effective reforms will need to confront issues of disciplinary difference.


Subject(s)
Policy , Product Labeling
16.
Soc Stud Sci ; 49(5): 653-681, 2019 10.
Article in English | MEDLINE | ID: mdl-31264517

ABSTRACT

White nationalists have a genetic essentialist understanding of racial identity, so what happens when using genetic ancestry tests (GATs) to explore personal identities, they receive upsetting results they consider evidence of non-white or non-European ancestry? Our answer draws on qualitative analysis of posts on the white nationalist website Stormfront, interpreted by synthesizing the literatures on white nationalism and GATs and identity. We show that Stormfront posters exert much more energy repairing individuals' bad news than using it to exclude or attack them. Their repair strategies combine anti-scientific, counter-knowledge attacks on the legitimacy of GATs and quasi-scientific reinterpretations of GATs in terms of white nationalist histories. However, beyond individual identity repair they also reinterpret the racial boundaries and hierarchies of white nationalism in terms of the relationships GATs make visible. White nationalism is not simply an identity community or political movement but should be understood as bricoleurs with genetic knowledge displaying aspects of citizen science.


Subject(s)
Citizen Science , Genetic Testing , Racism/psychology , Social Identification , White People/psychology , Genetic Testing/ethics , Humans , United States
17.
Genome Med ; 6(1): 8, 2014.
Article in English | MEDLINE | ID: mdl-24479693

ABSTRACT

BACKGROUND: This article provides a framework for disentangling the concept of participation, with emphasis on participation in genomic medicine. We have derived seven 'dimensions' of participation that are most frequently invoked in the extensive, heterogeneous literature on participation. To exemplify these dimensions, we use material from a database of 102 contemporary cases of participation, and focus here on cases specific to science and medicine. We describe the stakes of public participation in biomedical research, with a focus on genomic medicine and lay out the seven dimensions. DISCUSSION: We single out five cases of participation that have particular relevance to the field of genomic medicine, we apply the seven dimensions to show how we can differentiate among forms of participation within this domain. SUMMARY: We conclude with some provocations to researchers and some recommendations for taking variation in participation more seriously.

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