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Articles, books, book chapters by Andrew Smart

BMC Medical Genomics, 2017

Background It is becoming increasingly difficult to keep information about genetic ancestry separ... more Background
It is becoming increasingly difficult to keep information about genetic ancestry separate from information about health, and consumers of genetic ancestry tests are becoming more aware of the potential health risks associated with particular ancestral lineages. Because some of the proposed associations have received little attention from oversight agencies and professional genetic associations, scientific developments are currently outpacing governance regimes for consumer genetic testing.

Main text
We highlight the recent and unremarked upon emergence of biomedical studies linking markers of genetic ancestry to disease risks, and show that this body of scientific research is becoming part of public discourse connecting ancestry and health. For instance, data on genome-wide ancestry informative markers are being used to assess health risks, and we document over 100 biomedical research articles that propose associations between mitochondrial DNA and Y chromosome markers of genetic ancestry and a wide variety of disease risks. Taking as an example an association between coronary heart disease and British men belonging to Y chromosome haplogroup I, we show how this science was translated into mainstream and online media, and how it circulates among consumers of genetic tests for ancestry. We find wide variations in how the science is interpreted, which suggests the potential for confusion or misunderstanding.

Conclusion
We recommend that stakeholders involved in creating and using estimates of genetic ancestry reconsider their policies for communicating with each other and with the public about the health implications of ancestry information.

Ethnicity & health, Jan 13, 2016

Objectives . The paper investigates differences in engagement with medical research between White... more Objectives . The paper investigates differences in engagement with medical research between White British and Black, Asian and Minority Ethnic (BAME) groups in the UK, using data from the Wellcome Trust Monitor (WTM). The study used two waves of the WTM (n = 2575) to examine associations between ethnic group and participation in medical research, and willingness to participate (WP) in medical research. Logistic regression models controlled for socio-economic and demographic factors, and relevant outlooks and experiences that are assumed to be markers of engagement. Respondents from the BAME group were less likely to have participated in medical research compared to those from the White British group, but there was only patchy evidence of small ethnic group differences in WP. Influences on engagement with medical research varied somewhat between the White British and BAME groups, in particular in relation to occupation, education, health, attitudes to medical science and belief. Thes...

Social studies of …, Jan 1, 2008

In 2004, we were funded by the Wellcome Trust - the world's largest medical charity - through its... more In 2004, we were funded by the Wellcome Trust - the world's largest medical charity - through its Biomedical Ethics Programme to conduct a three-year project to investigate how genetic scientists working in biomedical research understood and operationalized race and ethnicity as categories in their research. 1 There had been limited research on these questions in the UK context, so this was to be a signicant undertaking. We focused on research studies examining genetic and environmental factors in the development of ...

Ethnic and Racial Studies, 2012

Abstract This paper considers how and why collective Muslim identity is expressed and mobilized b... more Abstract This paper considers how and why collective Muslim identity is expressed and mobilized by advocates of Muslim schools in Britain. This relates to broader questions about the conceptualization, construction and meanings of Muslim identities, and the problem of ...

Journal of Law and …, Jan 1, 2007

Journal of genetic counseling

This paper reports data from a qualitative study of patient experiences of DNA testing and cascad... more This paper reports data from a qualitative study of patient experiences of DNA testing and cascade screening for hypertrophic cardiomyopathy and long QT syndrome, cardiac conditions that place sufferers at risk of sudden death. The paper particularly focuses on potential impediments to testing and screening. Semi-structured interviews were undertaken with a purposive sample of 27 people in the UK who had undergone testing. In the context of the uncertainties that can characterize experiences of these disorders, the majority of participants in this sample embraced testing and screening as a way of providing health information for themselves or their relatives (particularly children). There was nevertheless evidence of ambivalence about the value and impact of the DNA test information which could influence participants&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; dispositions toward testing, and play into dilemmas about family communication. Other concerns arose in relation to communicating about these disorders, decisions to involve elderly relatives and pressures relating to family responsibility. The evidence of ambivalence provides insight into why some people may be resistant to testing, screening and sharing information. The findings about communication processes indicate potential areas of concern for the cascading process.

The Journal of Law, …, Jan 1, 2008

Medical Law …, Jan 1, 2008

Abstract This paper examines how the drive to include minority ethnic groups in biomedical resear... more Abstract This paper examines how the drive to include minority ethnic groups in biomedical research raises challenging questions for the governance of some biobanks. Using findings from a qualitative study with researchers working at 10 UK biobanks that have been designed to explore common complex diseases, our study highlights the potential discordance between the twin imperatives of &amp;amp;amp;amp;amp;amp;#x27;social inclusivity&amp;amp;amp;amp;amp;amp;#x27;and &amp;amp;amp;amp;amp;amp;#x27;analytical acuity&amp;amp;amp;amp;amp;amp;#x27;. While the researchers interviewed were keen to include minority ethnic groups in their research, ...

Critical public health, Jan 1, 2005

... It is in this context that I wish to comment on two concerns arising from George Ellison&... more ... It is in this context that I wish to comment on two concerns arising from George Ellison&#x27;s paper. Ellison&#x27;s ... understanding. Ellison is clear in his arguments regarding the socially constructed nature of race/ethnicity, and its status as a proxy measure. ...

…, Jan 1, 2006

Abstract The long-standing concerns about the measurement and communication of race and ethnicity... more Abstract The long-standing concerns about the measurement and communication of race and ethnicity in genetic research have spilled over into the editorial columns of a growing number of biomedical journals. Nature Genetics has played a prominent role in this debate with a series of editorials published between 2000��2004, culminating in the publication of an open-access Special Issue (Genetics for the human race) in November 2004. The Special Issue brought together contemporary research on the relationship between race, ...

NTM Journal of …, Jan 1, 2008

... Ellison, George TH, Tutton, Richard, Outram, Simon M., Martin, Paul, Ashcroft, Richard and Sm... more ... Ellison, George TH, Tutton, Richard, Outram, Simon M., Martin, Paul, Ashcroft, Richard and Smart, Andrew (2008) An interdisciplinary perspective on the impact of genomics on the meaning of &amp;amp;quot;race&amp;amp;quot;, and the future role of racial categories in biomedical research. ...

PLoS Medicine, Jan 1, 2007

International Journal for Quality in Health Care, Jan 1, 2006

Studies in History and Philosophy of Science Part C: …, Jan 1, 2006

Nature Reviews Genetics, Jan 1, 2004

BMC Medical Genomics, 2017

Ethnicity & health, Jan 13, 2016

Social studies of …, Jan 1, 2008

Ethnic and Racial Studies, 2012

Journal of Law and …, Jan 1, 2007

Journal of genetic counseling

The Journal of Law, …, Jan 1, 2008

Medical Law …, Jan 1, 2008

Critical public health, Jan 1, 2005

…, Jan 1, 2006

NTM Journal of …, Jan 1, 2008

PLoS Medicine, Jan 1, 2007

International Journal for Quality in Health Care, Jan 1, 2006

Studies in History and Philosophy of Science Part C: …, Jan 1, 2006

Nature Reviews Genetics, Jan 1, 2004

Journal of Biosocial Science, Jan 1, 2009

Sociology of Health and Illness

IGBis, SATSU, University of Nottingham, Jan 1, 2006

Instigating change in a globalised social environment : the impact of globalisation upon the prom... more Instigating change in a globalised social environment : the impact of globalisation upon the promotion of vegetarianism in the United Kingdom. PEARL: Plymouth Electronic Archive and Research Library. ...

Sociology of Health and Illness, Apr 26, 2021

Ethnic and Racial Studies, Apr 1, 2012

This paper considers how and why collective Muslim identity is expressed and mobilized by advocat... more This paper considers how and why collective Muslim identity is expressed and mobilized by advocates of Muslim schools in Britain. This relates to broader questions about the conceptualization, construction and meanings of Muslim identities, and the problem of essentialism that can arise when reporting identity claims that emphasize intra-group unity. Analysis of data from interviews with stakeholders in the debate about Muslim schools in Britain revealed advocates commonly regarded separate schooling as a protective measure against threats and/or attacks to Muslim identity. It is argued that interviewees invoked collective Muslim identity in ways that drew attention to common knowledge, values and practice, and/or shared life experiences relating to denigrated or discordant social identities. The commonalities expressed by respondents are interpreted as evidence of a convergence of identities and interests in particular social conditions, and are not claimed to be essential characteristics of collective Muslim identity.

The MIT Press eBooks, Apr 16, 2010

In 2004, we were funded by the Wellcome Trust��the world&#x27;s largest medical charity�... more In 2004, we were funded by the Wellcome Trust��the world&#x27;s largest medical charity��through its Biomedical Ethics Programme to conduct a three-year project to investigate how genetic scientists working in biomedical research understood and operationalized race and ethnicity as categories in their research. 1 There had been limited research on these questions in the UK context, so this was to be a signi��cant undertaking. We focused on research studies examining genetic and environmental factors in the development of ...

Sociology of Health and Illness, Apr 6, 2018

This article examines the articulation and enactment of racialised classifications in clinical pr... more This article examines the articulation and enactment of racialised classifications in clinical practice guidelines and in accounts of clinical practice. It contributes to debates about racialisation in medicine and its consequences. The research centred on the case study of prescribing guidelines for hypertension in England and Wales, drawing on documentary sources and semi-structured expert interviews. We found that conceptual and socio-political uncertainties existed about how to interpret the designation 'Black patients' and about the practices for identifying patients' race/ ethnicity. To 'close' uncertainties, and thus produce the guidelines and treat patients, respondents drew authority from disparate elements of the 'topologies of race'. This has implications for understanding processes of racialisation and for the future use of racialised clinical practice guidelines. We argue that clinical practice guidelines play a 'nodal' role in racialisation by forming an authoritative material connection that creates a path for translating racialised research into racialised healthcare practice, and that they carry with them implicit conceptual and sociopolitical uncertainties that are liable to create inconsistencies in healthcare practice.

BMC Medical Genomics, Jan 9, 2017

Background: It is becoming increasingly difficult to keep information about genetic ancestry sepa... more Background: It is becoming increasingly difficult to keep information about genetic ancestry separate from information about health, and consumers of genetic ancestry tests are becoming more aware of the potential health risks associated with particular ancestral lineages. Because some of the proposed associations have received little attention from oversight agencies and professional genetic associations, scientific developments are currently outpacing governance regimes for consumer genetic testing. Main text: We highlight the recent and unremarked upon emergence of biomedical studies linking markers of genetic ancestry to disease risks, and show that this body of scientific research is becoming part of public discourse connecting ancestry and health. For instance, data on genome-wide ancestry informative markers are being used to assess health risks, and we document over 100 biomedical research articles that propose associations between mitochondrial DNA and Y chromosome markers of genetic ancestry and a wide variety of disease risks. Taking as an example an association between coronary heart disease and British men belonging to Y chromosome haplogroup I, we show how this science was translated into mainstream and online media, and how it circulates among consumers of genetic tests for ancestry. We find wide variations in how the science is interpreted, which suggests the potential for confusion or misunderstanding. Conclusion: We recommend that stakeholders involved in creating and using estimates of genetic ancestry reconsider their policies for communicating with each other and with the public about the health implications of ancestry information.

Journal of Law Medicine & Ethics, 2008

Social Studies of Science, Jun 1, 2008

As the search for human genetic variation has become a priority for biomedical science, debates h... more As the search for human genetic variation has become a priority for biomedical science, debates have resurfaced about the use of race and ethnicity as scientific classifications. In this paper we consider the relationship between race, ethnicity and genetics, using insights from science and technology studies (STS) about processes of classification and standardization. We examine how leading biomedical science journals attempted to standardize the classifications of race and ethnicity, and analyse how a sample of UK genetic scientists used the concepts in their research. Our content analysis of 11 editorials and related guidelines reveals variations in the guidance on offer, and it appears that there has been a shift from defining the concepts to prescribing methodological processes for classification. In qualitative interviews with 17 scientists, the majority reported that they had adopted socio-political classification schemes from state bureaucracy (for example, the UK Census) for practical reasons, although some scientists used alternative classifications that they justified on apparently methodological grounds. The different responses evident in the editorials and interviews can be understood as reflecting the balance of flexibility and stability that motivate standardization processes. We argue that, although a genetic concept of race and ethnicity is unlikely to wholly supplant a socio-political one, the adoption of census classifications into biomedical research is an alignment of state bureaucracy and science that could have significant consequences.

Ethnicity & Health, May 13, 2016

The under-representation of minority ethnic groups in UK medical research

Journal of Biosocial Science, Jun 4, 2009

Berghahn Books, 2012

T here is an incongruity at the heart of postgenomic biomedical science. The sequencing of the hu... more T here is an incongruity at the heart of postgenomic biomedical science. The sequencing of the human genome promised the elimination of racial and ethnic categories from biomedical science (Schwartz 2001). However, despite this, we have witnessed a resurgent interest in 'race', including challenges to the longstanding orthodoxy (following Lewontin 1972) that classifications of human populations by 'race' are not supported by genetic data (Andreasen 2000; Risch et al. 2002; Rosenberg et al. 2002; Edwards 2003). While some geneticists have consigned the concept of 'race' to the scrapheap, others appear to be reviving it. This work is occurring within a broader social and scientific landscape, one in which differences between human populations are invested (or reinvested) with significance. This attention to groups, their differences and similarities and their boundaries feeds off of, and contributes to, our ideas about identities and belonging. It has the potential to create, reinforce and/or aggravate social and ethical issues surrounding, for example, matters of selfidentification, group representation, equality, stigmatization, discrimination and resource distribution. The particular discussions about 'race' in genetics which we consider in this chapter will be shown to reinvigorate debates about what 'race' really is and, by extension, claims about the status of collective or individual identities that draw upon (and reproduce) ideas relating to racial division. A major stimulus for this kind of work is the potential development of 'targeted' diagnostic and therapeutic interventions. Such 'targeting' is predicated on the search for significant biological differences within and between 'populations', which has led to the creation of large-scale scientific projects that map genetic variation. An often-cited example is the International Human Haplotype Map (HapMap) project, which aims to improve health by charting variations in DNA sequences between population groups labelled as 'Yoruba', 'Han Chinese', 'Japanese' and 'Americans of northern and western European descent' (International HapMap Consortium 2003). It should be noted, however, that beyond such high-profile examples, genetics "Identity Politics and the New Genetics," edited by Katharina Schramm, David Skinner, and David Rottenburg is available open access under a CC BY-NC-ND 4.0 license. This edition is supported by Knowledge Unlatched. OA ISBN: 978-1-78920-471-1. 'Race' as a Social Construction in Genetics 31 This open access edition has been made available under a CC BY-NC-ND 4.0 license, thanks to the support of Knowledge Unlatched.

In 2002, US psychiatrist Dr Sally Satel courted controversy by arguing in a New York Times magazi... more In 2002, US psychiatrist Dr Sally Satel courted controversy by arguing in a New York Times magazine article that physicians should take into account a patient’s race when they prescribed medicine. For many observers, her viewpoint contradicted the long-standing consensus that race was a biologically meaningless form of categorisation, and ignored concerns about the socially sensitive nature of making racialised judgements in healthcare. However, in 2006, the UK’s foremost authority on prescribing practices, the National Institute for Health and Care Excellence (NICE), issued a set of treatment guidelines for hypertension that stipulated a treatment pathway for ‘black patients of African or Caribbean decent’. In 2014, the US Joint Committee on Prevention, Detection, Evaluation, and Treatment of High Blood Pressure (JNC) followed suit, over- turning its 2003 race-blind policy. These developments raise difficult questions, not least for health care systems, policymakers and practitioners. This paper reports on research investigating the development of the NICE hypertension prescribing guideline, based on documentary analysis and interviews with key UK experts. We consider the discussions that surrounded its development, the types of evidence used to support the guideline, and ideas about its implementation. We analyse the intersections between different knowledge claims (about pharmacological evidence, tacit clinical experience and underlying assumptions about difference) to reflect on how racial categories are ascribed and how uncertainties about ‘mixedness’ are addressed. We will also discuss the implications of such guidance for evidence-based clinical practice and for policy debates about inclusion and equality.

We're a community dedicated to beating blood cancer by funding research and supporting those affe... more We're a community dedicated to beating blood cancer by funding research and supporting those affected. We fund world-class research, ensure everyone affected has access to the right support at the right time and campaign for better treatment.

with race ” [1]. They argue that the heterogeneity of racial and ethnic categories (and a lack of... more with race ” [1]. They argue that the heterogeneity of racial and ethnic categories (and a lack of consensus on how these categories should be defined and measured) make them poor markers for underlying differences in the genotypic, cultural, and structural characteristics responsible for inequalities in health (where “structural characteristics ” include a diverse range of historical and contemporary socio-political factors responsible for differential access to health resources and differential exposure to health risks). Such racial and ethnic categories, they argue, are also poor markers for the differential efficacy of diagnostic and therapeutic interventions. However, the authors distinguish between what they feel to be the appropriate descriptive use of such categories (to identify differences in health and health care that warrant further investigation and intervention), and their inappropriate attributive use (to identify the causal mechanisms involved and to select clinical ...

Examples of associations between mitochondrial DNA (mtDNA) or Y chromosome variants and diseases/... more Examples of associations between mitochondrial DNA (mtDNA) or Y chromosome variants and diseases/medical traits discussed in the biomedical literature. Description of data: an extensive list of published associations between mitochondrial DNA (mtDNA) or Y chromosome variants and diseases/medical traits. Organised by disease/medical traits, and including: mtDNA or Y Chromosome Variant; Proposed Association (or Lack of Association); Study Location; and Reference. (DOCX 58 kb)

Ethnic disparities in health and health care utilisation have encouraged policy makers and resear... more Ethnic disparities in health and health care utilisation have encouraged policy makers and researchers to press for ethnically inclusive sampling frames that are both: (i) representative (so that their findings are generalisable and applicable to the population as a whole); and (ii) comparative (so that any ethnic disparities can be exposed, examined, understood and addressed). This paper explores the potential consequences of policies that have sought to impose ethnically inclusive sampling frames that are both representative and comparative. Since the statistical requirements of representative and comparative samples are very different, the conflation of these two sampling frames under the aegis of inclusivity often leads to inadequately powered comparative analyses, particularly those involving the smaller samples of minority ethnic groups. Likewise, since the denominators required to assess the ethnic inclusivity of research samples are usually provided by statutory agencies, an...

NTM Zeitschrift für Geschichte der Wissenschaften, Technik und Medizin, 2008

FORUM 1 A webforum that documents the state of discussion when we started to plan the session can... more FORUM 1 A webforum that documents the state of discussion when we started to plan the session can be accessed at http://www.racesci.org/home.html.