Social Diversity in Humans: Implications and Hidden Consequences for Biological Research

Duster, Troy

doi:10.1101/cshperspect.a008482

Cited by 11 publications

(7 citation statements)

References 35 publications

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“…It is well documented that the use of race and ethnicity as surrogate markers for describing one’s risk for disease on a genomic level is common in both clinical practice [ 1 ] and research settings [ 2 – 7 ]. The utility of race to predict ancestry, genetic population groups and outcomes of treatment in clinical practice within the USA has been described by Barr as the “practitioner’s dilemma: can health care providers use a patient’s race to predict genetic variation, ancestry and outcomes in treatment?” [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

Physicians’ knowledge, beliefs, and use of race and human genetic variation: new measures and insights

Bonham

Sellers

Woolford

2014

BMC Health Serv Res

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BackgroundUnderstanding physician perspectives on the intersection of race and genomics in clinical decision making is critical as personalized medicine and genomics become more integrated in health care services. There is a paucity of literature in the United States of America (USA) and globally regarding how health care providers understand and use information about race, ethnicity and genetic variation in their clinical decision making. This paper describes the development of three scales related to addressing this gap in the literature: the Bonham and Sellers Genetic Variation Knowledge Assessment Index--GKAI, Health Professionals Beliefs about Race—HPBR, and Racial Attributes in Clinical Evaluation—RACE scales.MethodsA cross-sectional, web survey of a national random sample of general internists in the USA (N = 787) was conducted. Confirmatory factor analysis was used to assess the construct validity of the scales. Scale items were developed through focus groups, cognitive interviews, expert advisory panels, and exploratory factor analysis of pilot data.ResultsGKAI was measured as a count of correct answers (Mean = 3.28 SD = 1.17). HPBR yielded two domains: beliefs about race as a biological phenomenon (HPBR-BD, alpha = .69, 4 items) and beliefs about the clinical value of race and genetic variation for understanding risk for disease (HPBR-CD alpha = .61, 3 items). RACE yielded one factor (alpha = .86, 7 items).ConclusionsGKAI is a timely knowledge scale that can be used to assess health professional knowledge of race and human genetic variation. HPBR is a promising new tool for assessing health professionals’ beliefs about the role of race and its relationship with human genetic variation in clinical practice. RACE offers a valid and reliable tool for assessing explicit use of racial attributes in clinical decision making.

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Section: Introductionmentioning

confidence: 99%

Physicians’ knowledge, beliefs, and use of race and human genetic variation: new measures and insights

Bonham

Sellers

Woolford

2014

BMC Health Serv Res

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“…In addition, false assumptions about the distinctiveness of populations in the past appear to influence genetic ancestry analyses (46). As Duster notes, the notion that a population group is “pure” or “non-admixed” “is a statistical artifact that begins not with the DNA, but with the researcher's adopting of the folk categories of race and ethnicity”(48). Given what is common knowledge about evolutionary biology, there is no such thing as a “pure” population in the mathematical sense.…”

Section: Genetic Ancestry Test Results In the Context Of Human Biologymentioning

confidence: 99%

Direct-to-Consumer Genetic Testing's Red Herring: “Genetic Ancestry” and Personalized Medicine

Blell

Hunter

2019

Front. Med.

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The growth in the direct-to-consumer genetic testing industry poses a number of challenges for healthcare practice, among a number of other areas of concern. Several companies providing this service send their customers reports including information variously referred to as genetic ethnicity, genetic heritage, biogeographic ancestry, and genetic ancestry. In this article, we argue that such information should not be used in healthcare consultations or to assess health risks. Far from representing a move toward personalized medicine, use of this information poses risks both to patients as individuals and to racialized ethnic groups because of the way it misrepresents human genetic diversity.

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“…However, outside of these societies, the divergence between samples and population descriptors is also problematic. When the actual samples in the name of “European”, “African”, and “Asian” are taken from certain limited groups, without taking into account significant diversity within each region, it is unlikely that such broad terms have any scientific meaning, at least from the perspective of genetics on the global level [ 20 , 21 ]. Moreover, the research results may be taken as supporting the classic “racial” categories, with any discovered “differences” misinterpreted as genetically determined “racial differences.”…”

Section: Discussionmentioning

confidence: 99%

Human genetic research, race, ethnicity and the labeling of populations: recommendations based on an interdisciplinary workshop in Japan

et al. 2014

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BackgroundA challenge in human genome research is how to describe the populations being studied. The use of improper and/or imprecise terms has the potential to both generate and reinforce prejudices and to diminish the clinical value of the research. The issue of population descriptors has not attracted enough academic attention outside North America and Europe. In January 2012, we held a two-day workshop, the first of its kind in Japan, to engage in interdisciplinary dialogue between scholars in the humanities, social sciences, medical sciences, and genetics to begin an ongoing discussion of the social and ethical issues associated with population descriptors.DiscussionThrough the interdisciplinary dialogue, we confirmed that the issue of race, ethnicity and genetic research has not been extensively discussed in certain Asian communities and other regions. We have found, for example, the continued use of the problematic term, “Mongoloid” or continental terms such as “European,” “African,” and “Asian,” as population descriptors in genetic studies. We, therefore, introduce guidelines for reporting human genetic studies aimed at scientists and researchers in these regions.ConclusionWe need to anticipate the various potential social and ethical problems entailed in population descriptors. Scientists have a social responsibility to convey their research findings outside of their communities as accurately as possible, and to consider how the public may perceive and respond to the descriptors that appear in research papers and media articles.

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Social Diversity in Humans: Implications and Hidden Consequences for Biological Research

Cited by 11 publications

References 35 publications

Physicians’ knowledge, beliefs, and use of race and human genetic variation: new measures and insights

Physicians’ knowledge, beliefs, and use of race and human genetic variation: new measures and insights

Direct-to-Consumer Genetic Testing's Red Herring: “Genetic Ancestry” and Personalized Medicine

Human genetic research, race, ethnicity and the labeling of populations: recommendations based on an interdisciplinary workshop in Japan

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