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Moreau (2019) has raised concerns about the usage of DNA data obtained from vulnerable populations, such as the Uighurs in China. We discuss another case, situated in Europe and with a research history dating back 100 years: genetic investigations of Roma. While Moreau is mainly concerned with ethical issues, especially regarding informed consent, and though we share his concerns, here we focus on problems surrounding representativity. We claim that many of the ca. 440 publications in our sample neglect the methodological and conceptual challenges of representativity. Moreover, authors do not account for problematic misrepresen-tations of Roma resulting from the conceptual frameworks and sampling schemes they use. We question the representation of Roma as a "genetic isolate" and the underlying rationales, with a strong focus on sampling strategies. We discuss our results against the optimistic prognosis that the "new genetics" could help to overcome essentialist understandings of groups.
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Forensic Science international: Genetics and Forensic Science Iinternational: Reports communicate research on a variety of biological materials using genetics and genomic methods. Numerous guidelines have been produced to secure standardization and quality of results of scientific investigations. Yet, no specific guidelines have been produced for the ethical acquisition of such data. These guidelines summarize universally adopted principles for conducting ethical research on biological materials, and provide details of the general procedures for conducting ethical research on materials of human, animal, plant and environmental environmetal origin. Finally, the minimal ethics requirements for submission of research material are presented.
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In 2010 an international genomic research project entitled “Complete Khoisan and Bantu genomes from southern Africa” was published in Nature amidst wide publicity (Schuster et al 2010). The research aimed to examine the genetic structure of “indigenous hunter-gatherer peoples” selected from Namibia, and to compare the results with “Bantu from southern Africa” , including Nobel peace prize winner Archbishop Desmond Tutu. Four San individuals, the eldest in their respective communities, were chosen for genome sequencing, and the published article analysed many aspects of the correlations, differences and relationships found in the single-nucleotide polymorphisms (SNPs) (A single-nucleotide polymorphism is a variation in a single nucleotide that occurs at a specific position in a genome, where each variation is present to some appreciable degree within a population) within the sequenced genomes. A supplementary document published with the paper contained numerous conclusions and details that the San regarded as private, pejorative, discriminatory and inappropriate. The San leadership met with the authors in Namibia soon after publication, asking why they as leaders had not been approached for permission in advance, and enquiring about the informed consent process. The authors refused to provide details about the informed consent process, apart from stating that they had received video-recorded consents in each case (Hayes 2011). They defended their denial of the right of the San leadership to further information on the grounds that the research project had been fully approved by ethics committees/institutional review boards in three countries, (names of committees given to editors of this book) and that they had complied with all the relevant requirements. The San leadership wrote to Nature, expressing their anger at the inherent insult and lack of respect displayed by the process (Ngakaeaja 2011b). This case study details the most serious aspects of the perceived exploitative nature of the research, and the San response.
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This article suggests to focus on the history of human variation instead of focussing on the history of race science. It views the latter as a subset of the former, hence views race science as embedded into the larger field of life scientists' investigations into human variation. This paper explores why human variation is such an attractive and productive object particularly for the life sciences. It proposes that knowledge about human variation is incomplete in a promising way, and that it is of high instrumental value in the life sciences. I briefly illustrate the main points with an exemplary case, namely, population genetic studies of 'Roma'.
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Thousands of blood samples taken from Australia's indigenous people lie in institutional freezers of the global North, the legacy of a half-century of scientific research. Since those collections were assembled, standards of ethical research practice have changed dramatically, leaving some samples in a state of dormancy. While some European and American collections are still actively used for genetic research, this practice is viewed as unethical by most Australian genetic researchers, who have closer relationships with indigenous Australians and postcolonial politics. For collections to be used ethically, they require a guardian' who has an ongoing and documented relationship with the donors, so that consent to further studies on samples can be negotiated. This affective and bureaucratic network generates ethical biovalue' such that a research project can satisfy Australian ethical review. I propose in this article that without ethical biovalue, collections become orphan' DNA, divorced from a guardian and often difficult to trace to their sources. Such samples are both orphaned and functionally sterile, unable to produce data, scientific articles, knowledge or prestige. This article draws on an ethnographic study of genetic researchers who are working in indigenous communities across Australia. I present tales of researchers' efforts to generate ethical biovalue and their fears for succession; fears that extend to threats to destroy samples rather than see them orphaned, or worse, fall into the wrong hands. Within these material and affective networks, indigenous DNA morphs from biological sample to sacred object to political time bomb.
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Biological samples collected from indigenous communities from the mid-20th century for scientific study and preserved in freezers of the Global North have been at the center of a number of controversies. This essay explores why the problem of indigenous biospecimens has returned to critical attention frequently over the past two decades, and why and how Science and Technology Studies should attend to this problem. We propose that mutation - the variously advantageous, deleterious, or neutral mechanism of biological change - can provide a conceptual and analogical resource for reckoning with unexpected problems created by the persistence of frozen indigenous biospecimens. Mutations transcend dichotomies of premodern/modern, pro-science/anti-science, and north/south, inviting us to focus on entanglements and interdependencies. Freezing biospecimens induces mutations in indigenous populations, in the scientists who collected and stored such specimens, and in the specimens themselves. The jumbling of timescales introduced by practices of freezing generates new ethical problems: problems that become ever more acute as the supposed immortality of frozen samples meets the mortality of the scientists who maintain them. More broadly, we propose that an abductive' approach to Science and Technology Studies theories of co-production can direct attention to the work of temporality in the ongoing alignment of social and technical orders. Attending to the unfolding and mutating vital legacies of indigenous body parts, collected in one time and place and reused in others, reveals the enduring colonial dimensions of scientific practice in our global age and demonstrates new openings for ethical action. Finally, we outline the articles in this special issue and their respective mutations' to postcolonial Science and Technology Studies, a field that, like genome science, is racked with ethical and temporal dilemmas of reckoning for the past in the present.
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Geneticists say a global Y-chromosome database holds profiles from men who are unlikely to have given free informed consent. Geneticists say a global Y-chromosome database holds profiles from men who are unlikely to have given free informed consent.
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Remote sensing of night light emissions in the visible band offers a unique opportunity to directly observe human activity from space. This has allowed a host of applications including mapping urban areas, estimating population and GDP, monitoring disasters and conflicts. More recently, remotely sensed night lights data have found use in understanding the environmental impacts of light emissions (light pollution), including their impacts on human health. In this review, we outline the historical development of night-time optical sensors up to the current state of the art sensors, highlight various applications of night light data, discuss the special challenges associated with remote sensing of night lights with a focus on the limitations of current sensors, and provide an outlook for the future of remote sensing of night lights. While the paper mainly focuses on space borne remote sensing, ground based sensing of night-time brightness for studies on astronomical and ecological light pollution, as well as for calibration and validation of space borne data, are also discussed. Although the development of night light sensors lags behind daytime sensors, we demonstrate that the field is in a stage of rapid development. The worldwide transition to LED lights poses a particular challenge for remote sensing of night lights, and strongly highlights the need for a new generation of space borne night lights instruments. This work shows that future sensors are needed to monitor temporal changes during the night (for example from a geostationary platform or constellation of satellites), and to better understand the angular patterns of light emission (roughly analogous to the BRDF in daylight sensing). Perhaps most importantly, we make the case that higher spatial resolution and multispectral sensors covering the range from blue to NIR are needed to more effectively identify lighting technologies, map urban functions, and monitor energy use.
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In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents and Arizona State University (ASU) researchers upon discovering their DNA samples, initially collected for genetic studies on type 2 diabetes, had been used in several other genetic studies. The lawsuit reached a settlement in April 2010 that included monetary compensation and return of DNA samples to the Havasupai but left no legal precedent for researchers. Through semistructured interviews, institutional review board (IRB) chairs and human genetics researchers at US research institutions revealed their perspectives on the Havasupai lawsuit. For interviewees, the suit drew attention to indigenous concerns over genetic studies and increased their awareness of indigenous views. However, interviewees perceived no direct impact from the Havasupai case on their work; if they did, it was the perceived need to safeguard themselves by obtaining broad consent or shying away from research with indigenous communities altogether, raising important questions of justice for indigenous and minority participants. If researchers and IRBs do not change their practices in light of this case, these populations will likely continue to be excluded from a majority of research studies and left with less access to resources and potential benefit from genetic research participation.
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Although the repression and elimination of Roma from Hungarian society in the 1940s did not reach the same extent as in the German and Austrian part of the Third Reich, their characterization as lazy and work-shy, used to justify their persecution, was similar. This paper establishes the presence of racial hygienic discourse related to Roma during the late 1930s and the first half of the 1940s in Hungary, and traces its survival and influence on regional policy-making in the postwar period. It furthermore explores the transformation and adaptation of racism and eugenics to the socialist ideology of equality based on citizens’ participation in productive work in the early state socialist period, including the first Party declaration on the situation of Roma in Hungary in 1961. Specific attention is paid to the role of medical experts who discussed the “radical solution of the Gypsy-question” in the early 1940s and the immediate years following World War II. Reflecting on wider transformations of racism in the postcolonial and post-World War II period in Europe and North America, the paper contributes to scholarship that complicates the evaluation of the state socialist past, including the connection between medicine and politics in Cold War Europe.
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Who is a Native American? And who gets to decide? From genealogists searching online for their ancestors to fortune hunters hoping for a slice of casino profits from wealthy tribes, the answers to these seemingly straightforward questions have profound ramifications. The rise of DNA testing has further complicated the issues and raised the stakes. In Native American DNA, Kim TallBear shows how DNA testing is a powerful—and problematic—scientific process that is useful in determining close biological relatives. But tribal membership is a legal category that has developed in dependence on certain social understandings and historical contexts, a set of concepts that entangles genetic information in a web of family relations, reservation histories, tribal rules, and government regulations. At a larger level, TallBear asserts, the “markers” that are identified and applied to specific groups such as Native American tribes bear the imprints of the cultural, racial, ethnic, national, and even tribal misinterpretations of the humans who study them. TallBear notes that ideas about racial science, which informed white definitions of tribes in the nineteenth century, are unfortunately being revived in twenty-first-century laboratories. Because today’s science seems so compelling, increasing numbers of Native Americans have begun to believe their own metaphors: “in our blood” is giving way to “in our DNA.” This rhetorical drift, she argues, has significant consequences, and ultimately she shows how Native American claims to land, resources, and sovereignty that have taken generations to ratify may be seriously—and permanently—undermined. © 2013 by the Regents of the University of Minnesota. All rights reserved.
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