This essay begins with a current case involving racial profiling and DNA testing. The two combine to raise some troubling issues involving the use of each in police investigation. It is argued that racial profiling is unethical and ought to be avoided and that DNA testing on general populations of innocent people is fraught with dangers.

This essay begins with a current case involving racial profiling and DNA testing. The two combine to raise some troubling issues involving the use of each in police investigation. It is argued that racial profiling is unethical and ought to be avoided and that DNA testing on general populations of innocent people is fraught with dangers.

Direct-to-consumer personal genetic profiling services that claim to predict people’s individual disease risks may promise a new era of ‘personalised healthcare’, but a report from the Nuffield Council on Bioethics has found that the results are often inconclusive and more evidence should be provided by the companies who sell them. In September 2008, the Council established a Working Party, which I chaired, to consider the ethical issues raised by developments in medical profiling and online medicine. One of (...) our primary tasks was to investigate the burgeoning market for personal genetic profiling services. Two years on, the Council has published its findings. The resulting report2 raises a number of concerns about personal genetic profiling services and puts forward a series of policy recommendations to address these concerns. (shrink)

This article presents the design and development of a genetic algorithm to generate long-range transmit codes with low autocorrelation side lobes for radar to minimize target profile estimation error. The GA described in this work has a parallel processing design and has been used to generate codes with multiple constellations for various code lengths with low estimated error of a radar target profile.

The science and technology of genetic testing is rapidly advancing with the consequences that genetic testing may well offer the prospect of being able to detect the onset of future disabilities. Some recent research also indicates that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed and win or the propensity for risk-taking, which may be of interest to third parties. However, as this technology becomes more prevalent there is a danger (...) that the genetic information may be misused by entities such as employers, insurance companies, educational facilities, and finance companies and that people with particular genetic profiles may be discriminated against.This book explores the different types and the potential uses of genetic testing. The book highlights the ethical and legal dilemmas and the challenges arising as a result of emerging and rapidly advancing genetic science. Chapters in the book assess the importance and impact of the US Genetic Information Non-Discrimination Act (GINA) in the employment and health insurance contexts asking whether it is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating individuals' fears of discrimination. The book then goes on to make the case for regulation at the European Union level in order to protect the privacy of genetic information and to prevent the discriminatory use of genetic information in Europe. It considers what can be learnt from the experience of the US in addressing ethical and legal issues as well as the impact that the UN Convention on the Rights of Persons with Disabilities is having on this debate within the EU. (shrink)

The importance of non-codifying DNA polymorphism for the administration of justice is now well known. In Spain, however, this type of test has given rise to questions in recent years: Should consent be obtained before biological samples are taken from an individual for DNA analysis? Does society perceive these techniques and methods of analysis as being reliable? There appears to be lack of knowledge concerning the basic norms that regulate databases containing private or personal information and the protection that information (...) of this type must be given. This opinion survey and the subsequent analysis of the results in ethical terms may serve to reveal the criteria and the degree of information that society has with regard to DNA databases. In the study, 73.20% of the population surveyed was in favour of specific legislation for computer files in which DNA analysis results for forensic purposes are stored. (shrink)

In this article I argue that the proper subjects of intangible property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy these intangible property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or societal invasions into private domains. I argue that the threshold for overriding privacy rights and intangible property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is (...) commonly suggested. Once the bar is raised, so‐to‐speak, the burden of overriding it is formidable. Thus many policy decisions that have been recently proposed or enacted – citywide audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national bans on genetic testing and enhancement of humans, to name a few – will have to be backed by very strong arguments. (shrink)

In this article I argue that the proper subjects of intangible property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy these intangible property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or societal invasions into private domains. I argue that the threshold for overriding privacy rights and intangible property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is (...) commonly suggested. Once the bar is raised, so‐to‐speak, the burden of overriding it is formidable. Thus many policy decisions that have been recently proposed or enacted – citywide audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national bans on genetic testing and enhancement of humans, to name a few – will have to be backed by very strong arguments. (shrink)

This article investigates a high-profile and ongoing dilemma for healthcare professionals, namely whether the existence of a duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a (...) putative duty of care to the patient’s close relatives could coexist in this context. This article examines whether embracing the concept of coexisting duties could enable HCPs to respect duties in line with their clinical judgement, thereby providing legal support and clarity to professionals to allow them to provide the best possible genetics service to both the patient and their family. We argue that these dual duties, framed as a novel, composite duty to consider the interests of genetic relatives, could allow HCPs to exercise and act on their professional judgements about the relative value of information to family members, without fears of liability for negligence or breach of confidence. (shrink)

Preimplantation genetic diagnosis (PGD) raises serious moral questions concerning the parent-child relationship. Good parents accept their children unconditionally: they do not reject/attack them because they do not have the features they want. There is nothing wrong with treating a child as someone who can help promote some other worthwhile end, providing the child is also respected as an end in him or herself. However, if the child's presence is not valued in itself, regardless of any further benefits it brings, (...) the child is not being treated as an end in the full sense of the term. In this paper, I argue that these principles apply to human embryos, as well as to born human offspring: the human moral subject is a bodily being, whose interests and rights begin with the onset of his or her bodily life. The rights of the living, bodily human individual include a right not to be attacked/abandoned because of his or her genetic profile. PGD is harmful to the parent-child relationship, and we give mixed messages to parents by expecting them to show unconditional commitment to offspring after birth, while inviting them to take a very different approach at the prenatal stage. (shrink)

Many ethical concerns surrounding human genetics studies remain unresolved. We report here the situation in Cameroon.Objectives: To describe the profile of human genetic studies that used Cameroonian DNA samples, with specific focus on i) the research centres that were involved, ii) authorship, iii) population studied, iv) research topics and v) ethics disclosure, with the aim of raising ethical issues that emerged from these studies.Method: Bibliometric Studies; we conducted a PubMed-based systematic review of all the studies on human genetics that (...) used Cameroonian DNA samples from 1989 to 2009.Results and Discussion: Fifty articles were identified, involving predominantly research centres from Europe (64%) and America (32%). Only 7 (14%) Cameroonian institutions and 14 (28%) Cameroonian authors were associated with these publications.At least 52% of publications were devoted to population genetics (variation/migration patterns) amongst 30 Cameroonian ethnic groups. Very few studies concerned public health related genetic issues and only 5 (10%) references were found for hemoglobinopathies like sickle cell anaemia. Almost all DNA samples are ‘banked’ outside of the African continent.Capacity building, rights to the genetic information and benefits to the individuals, communities and populations who contribute to these studies are addressed.Conclusions: 1) Our data suggests the need for a wider debate towards building capacity and addressing ethical issues related to human genomic research in sub-Saharan Africa and specifically in Cameroon; 2) National ethical guidelines and regulations concerning the collection, use and storage of human DNA are urgently needed in Cameroon. (shrink)

Complex diseases involve both a genetic component and a response to environmental factors or lifestyle changes. Recently, genome-wide association studies (GWAS) have succeeded in identifying hundreds of polymorphisms that are statistically associated with complex diseases. However, the association is usually weak and none of the associated allelic forms is either necessary or sufficient for the disease occurrence. We argue that this promotes a network view, centred on functional redundancy. We adapted reliability theory to the concerned sub-network, modelled as a (...) parallel array of functional modules. In our model, as long as one module remains active, the function correlated with the respective disease is ensured and disease does not occur. Genetic factors reduce the initial number of available modules while environment, contingent surroundings, personal history, epigenetics, and some intrinsic stochasticity influence their persistence time. This model reproduces age-specific incidence curves and explains the influence of environmental changes. It offers a new paradigm, according to which disease occurs due to a lack of functional elements, depending on many idiosyncratic factors. Genetic risk assessed from GWAS is only a statistical notion with no direct interpretation at the individual level. However, genomic profiling could be useful at population level in devising models to guide decisions in health care policy. (shrink)

It might seem that racial profiling by doctors raised few of the same concerns as racial profiling by police, immigration, or airport security. This paper argues that the similarities are greater than first appear. The inappropriate use of racial generalizations by doctors may be as harmful and insulting as their use by law enforcement officials. Indeed, the former may be more problematic in compromising an ideal of individualized treatment that is more applicable to doctors than to police. Yet (...) doctors, unlike police, should not attempt to ignore race altogether. Race and ethnicity are associated with the geography of disease, with social and cultural factors relevant to disease, and, to some extent, with genetic predispositions to disease. Moreover, greater attention to the distinctive health conditions of certain racial and ethnic groups is necessary to make up for past neglect. But it will be a tricky business to steer a middle course between a naïve, reckless, or dogmatic color blindness and a stereotype-driven overreliance on race and ethnicity. In trying to steer such a course, the doctor can only hope for the day when a combination of more individualized genomic medicine and greater social equality will make it possible for her to pay less attention to race and ethnicity without detriment to her patients' health. (shrink)

In this brief report, the authors argue that while a lot of concerns about forensic DNA databases have been raised using arguments from biomedical ethics, these databases are used in a complete different context from other biomedical tools. Because they are used in the struggle against crime, the decision to create or store a genetic profile cannot be left to the individual. Instead, this decision is made by officials of a society. These decisions have to be based on a (...) policy that is the concretisation of some of society's most fundamental ideas about its own nature and function. Individuals wanting to influence these decisions have to try to influence this policy, within the bounds of a state's own self-concept. This article is an attempt to reorient the discussion about forensic DNA databases from a biomedical debate to a more political–philosophical one. (shrink)

A lively and accessible history of Modernism, _The First Moderns_ is filled with portraits of genius, and intellectual breakthroughs, that richly evoke the _fin-de-siècle_ atmosphere of Paris, Vienna, St. Louis, and St. Petersburg. William Everdell offers readers an invigorating look at the unfolding of an age. "This exceptionally wide-ranging history is chock-a-block with anecdotes, factoids, odd juxtapositions, and useful insights. Most impressive.... For anyone interested in learning about late 19th- and early 20th- century imaginative thought, this engagingly written book is (...) a good place to start."—_Washington Post Book World_ "_The First Moderns_ brilliantly maps the beginning of a path at whose end loom as many diasporas as there are men."—Frederic Morton, _The Los Angeles Times Book Review_ "In this truly exciting study of the origins of modernist thought, poet and teacher Everdell roams freely across disciplinary lines.... A brilliant book that will prove useful to scholars and generalists for years to come; enthusiastically recommended."—_Library Journal_, starred review "Everdell has performed a rare service for his readers. Dispelling much of the current nonsense about 'postmodernism,' this book belongs on the very short list of profound works of cultural analysis."—_Booklist_ "Innovative and impressive... [Everdell] has written a marvelous, erudite, and readable study."-Mark Bevir, _Spectator_ "A richly eclectic history of the dawn of a new era in painting, music, literature, mathematics, physics, genetics, neuroscience, psychiatry and philosophy."—Margaret Wertheim, _New Scientist_ "[Everdell] has himself recombined the parts of our era's intellectual history in new and startling ways, shedding light for which the reader of _The First Moderns_ will be eternally grateful."—Hugh Kenner, _The New York Times Book Review_ "Everdell shows how the idea of "modernity" arose before the First World War by telling the stories of heroes such as T. S. Eliot, Max Planck, and Georges Serault with such a lively eye for detail, irony, and ambiance that you feel as if you're reliving those miraculous years."—Jon Spayde, _Utne Reader_. (shrink)

A lively and accessible history of Modernism, _The First Moderns_ is filled with portraits of genius, and intellectual breakthroughs, that richly evoke the _fin-de-siècle_ atmosphere of Paris, Vienna, St. Louis, and St. Petersburg. William Everdell offers readers an invigorating look at the unfolding of an age. "This exceptionally wide-ranging history is chock-a-block with anecdotes, factoids, odd juxtapositions, and useful insights. Most impressive.... For anyone interested in learning about late 19th- and early 20th- century imaginative thought, this engagingly written book is (...) a good place to start."—_Washington Post Book World_ "_The First Moderns_ brilliantly maps the beginning of a path at whose end loom as many diasporas as there are men."—Frederic Morton, _The Los Angeles Times Book Review_ "In this truly exciting study of the origins of modernist thought, poet and teacher Everdell roams freely across disciplinary lines.... A brilliant book that will prove useful to scholars and generalists for years to come; enthusiastically recommended."—_Library Journal_, starred review "Everdell has performed a rare service for his readers. Dispelling much of the current nonsense about 'postmodernism,' this book belongs on the very short list of profound works of cultural analysis."—_Booklist_ "Innovative and impressive... [Everdell] has written a marvelous, erudite, and readable study."-Mark Bevir, _Spectator_ "A richly eclectic history of the dawn of a new era in painting, music, literature, mathematics, physics, genetics, neuroscience, psychiatry and philosophy."—Margaret Wertheim, _New Scientist_ "[Everdell] has himself recombined the parts of our era's intellectual history in new and startling ways, shedding light for which the reader of _The First Moderns_ will be eternally grateful."—Hugh Kenner, _The New York Times Book Review_ "Everdell shows how the idea of "modernity" arose before the First World War by telling the stories of heroes such as T. S. Eliot, Max Planck, and Georges Serault with such a lively eye for detail, irony, and ambiance that you feel as if you're reliving those miraculous years."—Jon Spayde, _Utne Reader_. (shrink)

Poorly understood, linked in complex ways to ideas about race and European identity, and the focus today of an ethically vexed and rapidly expanding testing industry, cystic fibrosis is a relatively common life-threatening genetic disorder in the United States, the United Kingdom, and the European Union. Many genetic diseases are invisible to the general public, but CF is a high-profile genetic disease, often characterized as a “white” disease though it occurs in many populations. Over the last five (...) years it has become the focus of genetic screening programs of many kinds, but especially for newborns, all over the world. CF is also a scientifically interesting genetic disease. By the simple if imperfect .. (shrink)

The background of this paper is the ongoing dismantling of the social insurance systems in favour of commercialisation and privatisation of insurances needed for illness, old age and premature death. This combined with the increased possibility of using genetic testing for differentiating personal insurance premiums has the potentiality of creating a ‘genetic proletariat’ — an uninsurable high-risk population. The common way of handling this problem in Sweden, and many other developed countries around the North Atlantic, has been to (...) regulate insurance companies’ right to ask for and use genetic information in various ways. There is a distinction between partial regulation (that allows insurance companies access to genetic information from genetic tests already made, sometimes only above a specified amount, but not to demand new tests) and total regulation (that forbids insurance companies to ask for or use any genetic information). I will argue that these forms of regulation probably will have adverse consequences given the dismantling of collective social insurance systems. If this is convincing, a better way to solve the problem of an uninsurable high-risk population (and other problems) is to resurrect the collective, obligatory insurance systems in which the individual risk profile does not constitute a basis for premium determination. Both arguments cast in terms of consequences and justice render support for this conclusion. (shrink)

Grammatical markers are not uniformly impaired across speakers of different languages, even when speakers share a diagnosis and the marker in question is grammaticalized in a similar way in these languages. The aim of this work is to demarcate, from a cross-linguistic perspective, the linguistic phenotype of three genetically heterogeneous developmental disorders: specific language impairment, Down syndrome, and autism spectrum disorder. After a systematic review of linguistic profiles targeting mainly English-, Greek-, Catalan-, and Spanish-speaking populations with developmental disorders (n = (...) 880), shared loci of impairment are identified and certain domains of grammar are shown to be more vulnerable than others. The distribution of impaired loci is captured by the Locus Preservation Hypothesis which suggests that specific parts of the language faculty are immune to impairment across developmental disorders. Through the Locus Preservation Hypothesis, a classical chicken and egg question can be addressed: Do poor conceptual resources and memory limitations result in an atypical grammar or does a grammatical breakdown lead to conceptual and memory limitations? Overall, certain morphological markers reveal themselves as highly susceptible to impairment, while syntactic operations are preserved, granting support to the first scenario. The origin of resilient syntax is explained from a phylogenetic perspective in connection to the “syntax-before-phonology” hypothesis. (shrink)

Cannabis sativa L. is grown and marketed under a large number of named strains. Strains are often associated with phenotypic traits of interest to consumers, such as aroma and cannabinoid content. Yet genetic inconsistencies have been noted within named strains. We asked whether genetically inconsistent samples of a commercial strain also display inconsistent aroma profiles. We genotyped 32 samples using variable microsatellite regions to determine a consensus strain genotype and identify genetic outliers for four strains. Results were used (...) to select 15 samples for olfactory testing. A genetic outlier sample was available for all but one strain. Aroma profiles were obtained by 55 sniff panelists using quantitative sensory evaluation of 40 odor descriptors. Within a strain, aroma descriptor frequencies for the genetic outlier were frequently at odds with those of the consensus samples. It appears that within-strain genetic differences are associated with differences in aroma profile. Because these differences were perceptible to untrained panelists, they may also be noticed by retail consumers. Our results could help the cannabis industry achieve better control of product consistency. (shrink)

The exponential growth of genetic knowledge and precision medicine research raises hopes for improved prevention, diagnosis, and treatment options for children with behavioral and psychiatric conditions. Although well-intended, this prospect also raise the possibility — and concern — that behavioral, including psychiatric genetic data would be increasingly used — or misused — outside the clinical context, such as educational settings. Indeed, there are ongoing calls to endorse a “personalized education” model that would tailor educational interventions to children's behavioral (...) and psychiatric genetic makeup. This article explores the justifications for, and prospects and pitfalls of such endeavors. It considers the scientific challenges and highlights the ethical, legal, and social issues that will likely arise should behavioral genetic data become available and are routinely incorporated in student education records. These include: when to disclose students' behavioral and psychiatric genetic profile; whose genomic privacy is protected and by whom; and how students' genetic data may affect education-related decisions. I argue that the introduction of behavioral genetics in schools may overshadow the need to address underlying structural and environmental factors that increase the risk for psychiatric conditions of all students, and that the unregulated use of student behavioral genetic profiles may lead to unintended consequences that are detrimental for individuals, families and communities. Relevant stakeholders — from parents and students to health professionals, educators, and policy-makers — ought to consider these issues before we forge ahead with a genomically informed education system. (shrink)

Current methods of forensic DNA profiling, based on Polymerase Chain Reaction amplifications of a varying number of Short Tandem Repeat loci found at different locations on the human genome, are regularly described as constituting the “gold standard for identification” in contemporary society. At a time when criminal justice systems in Europe and North America increasingly seek to utilize the epistemic authority of a variety of sciences in support of the apprehension and prosecution of suspects and offenders, genetic science (...) and recombinant DNA technology are often singled out for particular approbation. Indeed, the development and application of DNA profiling has been widely described as the “greatest breakthrough in forensic science since fingerprinting.”. (shrink)

The discovery of the molecular structure of deoxyribonucleic acid and the science of molecular biology have profoundly changed medicine’s diagnostic capability and promise to transform the therapeutic realm. When some genetic disorders are diagnosed, physicians can intervene for prevention or treatment. While the basic structure of DNA is the same for all human beings, no two individuals, other than identical twins, have the same DNA sequence. This discovery has had important repercussions in the criminal justice system, where DNA can (...) serve as an identification tool.At the crossroads of these different uses of DNA, there are great concerns about potential misuses of genetic information. Preventing disease, curing illness, and convicting criminals are all seen as worthwhile uses of the technology, but concerns of potential misuse in medicine or in the criminal justice system are not unfounded. A 1998 American Medical Association study showed that 68 percent of patients had fears that their genetic test results would be used against them by their employers or insurers. Others, pointing to racial profiling, have suggested that we may now face genetic profiling. (shrink)

With the highest profile seller of $99 genetic tests under fire, will public trust in personalised medicine suffer?

Margaret Brazier has argued that, in the literature on reproductive technology, women's “right” to reproduce is privileged, pushed, and subordinated to patriarchal values in such a way that it amounts to women's old “duty” to reproduce, dressed up in modern guise. I agree that there are patriarchal assumptions made in discussions of whether women have a right to select which embryos to implant or which fetuses to carry to term. Forcing ourselves to see women as active, rational decisionmakers tends to (...) counteract any lingering patriarchal assumptions. But rational decisionmaking requires information. Voting wisely requires information about the candidates. Taking women's reproductive rights seriously means taking seriously women's need for relevant information to make rational decisions, including decisions about which embryos to implant or alter. I argue that preimplantation genetic profiles and prenatal test information should be made available to prospective parents, especially prospective mothers, unless doing so threatens to harm the resulting child or the larger society in specifiable and important ways. (shrink)

The discovery of the molecular structure of deoxyribonucleic acid and the science of molecular biology have profoundly changed medicine’s diagnostic capability and promise to transform the therapeutic realm. When some genetic disorders are diagnosed, physicians can intervene for prevention or treatment. While the basic structure of DNA is the same for all human beings, no two individuals, other than identical twins, have the same DNA sequence. This discovery has had important repercussions in the criminal justice system, where DNA can (...) serve as an identification tool.At the crossroads of these different uses of DNA, there are great concerns about potential misuses of genetic information. Preventing disease, curing illness, and convicting criminals are all seen as worthwhile uses of the technology, but concerns of potential misuse in medicine or in the criminal justice system are not unfounded. A 1998 American Medical Association study showed that 68 percent of patients had fears that their genetic test results would be used against them by their employers or insurers. Others, pointing to racial profiling, have suggested that we may now face genetic profiling. (shrink)

Genetic epidemiology is a rapidly advancing field due to the recent availability of large amounts of omics data. In recent years, it has become possible to obtain omics information at the single‐cell level, so genetic epidemiological models need to be updated to integrate with single‐cell expression data. In this perspective paper, we propose a cell population‐based framework for genetic epidemiology in the single‐cell era. In this framework, genetic diversity influences phenotypic diversity through the diversity of cell (...) population profiles, which are defined as high‐dimensional probability distributions of the state spaces of biomolecules of each omics layer. We discuss how biomolecular experimental measurement data can capture the different properties of this distribution. In particular, single‐cell data constitute a sample from this population distribution where only some coordinate values are observable. From a data analysis standpoint, we introduce methodology for feature extraction from cell population profiles. Finally, we discuss how this framework can be applied not only to genetic epidemiology but also to systems biology. (shrink)

The vast network of Drosophila geneticists spawned by Thomas Hunt Morgan's fly room in the early 20th century has justifiably received a significant amount of scholarly attention. However, most accounts of the history of Drosophila genetics focus heavily on the "boss and the boys," rather than the many other laboratory groups which also included large numbers of women. Using demographic information extracted from the Drosophila Information Service directories from 1934 to 1970, we offer a profile of the gendered division of (...) labor within Drosophila genetics in the United States during the middle decades of the 20th century. Our analysis of the gendered division of labor supports a reconsideration of laboratory practices as different forms of work. (shrink)

Recent advances in population genetics have made it possible to infer an individual's ancestral origin with a high degree of reliability, giving rise to the new technology called ‘DNA Ancestry Profiling’. Bioethicists have raised concerns over using this technology within a forensic context, many of which stem from issues concerning race. In this article, I offer some reasons why we ought to allow forensic scientists to use DNA Ancestry Profiling to infer the race or ethnicity of perpetrators — (...) on a particular understanding of race or ethnicity — in at least some cases. First, there is reason to think the process will meet our evidential standards in many cases. Second, the technology has serious prospects for improving racial justice. Third, the ethical concerns that have been raised can be addressed. And last, using Forensic DNA Ancestry Profiling to infer race or ethnicity has many benefits over its successor technology known as Molecular Photofitting. I conclude the essay by sketching the empirical work that remains to be done. (shrink)

The genome revolution has provided the basis for many new applications in diverse areas such as health, food and agriculture, and forensics. While standard DNA profiling has become the paramount form of identification in forensics, expansion of genomic applications is being considered and tested to provide more descriptive information to facilitate the capture of perpetrators. Two major applications are being explored and tested: 1) ancestry profiling from which race can be inferred; and 2) profiling for physical traits (...) to provide a genetic-based description or sketch. The use and incorporation of these new applications raises several logistical questions and ethical issues. This article will explore some of the policy implications in the use of expanded genome profiling for forensics purposes. (shrink)

Abstract The introduction of genetically modified plants into the environment has been marked by different positions, either in favor of or against their release. However, the problem goes well beyond such contradictory positions; it is necessary to take into account the legislation, ethics, biosafety, and the environment in the considerations related to the release of genetically modified organisms (GMOs). To this end, the Brazilian Committee of Biosafety (CTNBio), a consultative and deliberative multidisciplinary collegiate, provides technical and advisory support to the (...) Brazilian Federal Government. This committee consists of scientists and non-scientists who participate in evaluating the dossiers of companies that are requesting approval by the Brazilian Government; consequently, the aim of this study was to investigate whether commercial approvals of GMOs were associated with the profile of the CTNBio members. Research was based on the minutes taken at CTNBio meetings carried out from 2006 up to 2009, considering law 11.105/2005 and the Constitution of 1988 as legal frameworks, to determine the number of voters in favor of or against releasing genetically modified Bt-maize, Bt-cotton, and herbicide resistant soybeans to be used in Brazilian agriculture. Via the internet, we had access to the curriculum vitae of the CTNBio members through the Plataforma Lattes database of the National Council for Scientific and Technological Development (CNPq), where we found their area of expertise. CTNBio members were divided into expert-for, expert-against, non-expert-for, and non-expert-against. Results showed that CTNBio decisions could be based on technical criteria as well as on the policy of the institution that expert-members were representing. Content Type Journal Article Category Articles Pages 1-11 DOI 10.1007/s10806-011-9347-x Authors Glenda Morais Rocha Braña, Programa de Pós-Graduação em Bioética da Cátedra/UNESCO, Faculdade de Ciências da Saúde, Universidade de Brasília, Brasília, DF, Brazil Ana Luisa Miranda-Vilela, Departamento de Genética e Morfologia, Laboratório de Genética Toxicológica, Instituto de Ciências Biológicas, Universidade de Brasília, Brasília, DF, Brazil Cesar Koppe Grisolia, Departamento de Genética e Morfologia, Laboratório de Genética Toxicológica, Instituto de Ciências Biológicas, Universidade de Brasília, Brasília, DF, Brazil Journal Journal of Agricultural and Environmental Ethics Online ISSN 1573-322X Print ISSN 1187-7863. (shrink)

What Is Race? Evidence from Scientists is a picture book for schoolchildren published by UNESCO as part of its high-profile campaign on race. The 87-page, oblong, soft-cover booklet contains bold, semi-abstract, pared-down images accompanied by text, devised to make scientific concepts ‘more easily intelligible to the layman’. Produced by UNESCO’s Department of Mass Communication, the picture book represents the organization’s early-postwar confidence in the power of scientific knowledge as a social remedy and diplomatic tool. In keeping with a significant component (...) of the race campaign, What Is Race? presented genetics as the route to an enlightened, scientific, non-prejudiced understanding of race. This article seeks to explain the book’s management, aesthetics and framing in the context of postwar disciplinary and international politics. Viewing UNESCO’s race campaign as a high point for an internationalist ideology of mass education, this article also analyses the visual and literary arguments of What Is Race? and proposes that the enduring image of genetics as technical and neutral knowledge was in part shaped by UNESCO’s efforts to communicate scientific authority to an apparently ‘popular’ audience. (shrink)

Mature spermatozoa are permeable to foreign DNA and RNA molecules. Here I propose a model, whereby extrachromosomal genetic information, mostly encoded in the form of RNA in somatic cells, can cross the Weismann barrier and reach epididymal spermatozoa. LINE‐1 retrotransposon‐derived reverse transcriptase (RT) can play key roles in the process by expanding the RNA‐encoded information. Retrotransposon‐encoded RT is stored in mature gametes, is highly expressed in early embryos and undifferentiated cells, and becomes downregulated in differentiated cells. In turn, RT (...) plays a role in developmental control, as its inhibition arrests developmental progression of early embryos with globally altered transcriptomic profiles. Thus, sperm cells act as recipients, and transgenerational vectors of somatically derived genetic information which they pass to the next generation with the potential to modify the fate of the developing embryos. (shrink)

Vaccines represent preventative interventions amenable to immunogenetic prediction of how human variability will influence their safety and efficacy. The genetic polymorphism among individuals within any population can render possible that the immunity elicited by a vaccine is variable in length and strength. The same immune challenge (virus and/or vaccine) could provoke partial, complete or even failed protection for some individuals treated under the same conditions. We review genetic variants and mechanistic relationships among chemokines, chemokine receptors, interleukins, interferons, interferon (...) receptors, toll‐like receptors, histocompatibility antigens, various immunoglobulins and major histocompatibility complex antigens. These are the targets for variation among macrophages, dendritic cells, natural killer cells, T‐ and B‐lymphocytes, and complement. The technology platforms (mRNA, viral vectors, proteins) utilized to produce vaccines against SARS‐CoV‐2 infections may each trigger genetically distinct immune reactogenic profiles. With DNA biobanking and immunoprofiling of recipients, global COVID‐19 vaccinations could launch a new era of personalized healthcare. (shrink)

Health policy is increasingly confronted with the demand for financing genetic testing on inherited susceptibility to disease. Tests on polymorphism/snp associated with multicausal and chronic conditions are already offered in private commercial institutions or in academic hospitals. The increasing pressure on public health services to offer SNP testing leads to first methodological approaches for a generally valid regulatory framework applicable for inclusion or refusal of genetic tests into the public health services. Systematic search in Medline, Embase and the (...) Web for methodological papers or guidelines for the assessment of polymorphism-screening. Since genetic testing has not only clinical and economic effects on health care, but also primarily ethical consequences by profiling our understanding of “health” and “disease”, this paper gives an overview of relevant aspects and background information to consider in the assessment of genetic tests. Although 2–3 million SNPs are identified and the journals are full of reported “significant” associations between disease and mutation, only a few can be replicated unequivocally. The ACCE -framework was developed by the Center of Disease Control for the assessment of genetic testing. This standardised appraisal approach proposes collecting and evaluating: Prevalence, genotype-/phenotype-relation. Clinical presentation: natural history; the different expressions of disease. Performance of the genetic test. Implications for therapy and prevention. Conclusion for clinical applications of risk-profiling of health on their susceptibility to disease and/or for clarification of disease for therapy planning. Since genetic testing is urging its way into the health care system, the actual danger is, that population screening starts before valid evidence from big prospective studies have been carried out and delivered proofs of direct causal associations. Before diffusing into the health care system we are suggesting to take a cautious and standardised approach. (shrink)

In this study a combination of computer tools for coupling and virtual screening is detailed, in 108 active molecules and 3620 decoys to find stabilizers for G quadruplex. To have more precise results, combinations of coupling programs with fifteen energy scoring functions were applied. The validation and evaluation of the metrics was done with the CompScore genetic algorithm. The results showed an increase in BEDROC and EF of 50% compared to other strategies, as well as reflecting early recognition of (...) active molecules. From these results it is possible to work with the molecules that showed a good early recognition and evaluate their effect as G4 stabilizers. This ensures more efficient and accurate results in the preclinical stage for the development of anticancer drugs. Keywords: Enrichment metrics; telomere; G quadruplex ; CompScore. References [1]M. Porru, P. Zizza, M. Franceschin, C. Leonetti and A. Biroccio. «EMICORON: A multi-targeting G4 ligand with a promising preclinical profile» 2017. Biochimica et Biophysica Acta - General Subjects, 1861, 1362–1370. [Online]. Available: https://doi.org/10.1007/s00294-018-0836-6. [2]K. Tomita. «How long does telomerase extend telomeres? Regulation of telomerase release and telomere length homeostasis». Current Genetics, 64, 1177–1181. 2018. [Online]. Available: https://doi.org/10.1016/j.bbagen. 2016.11.010. [3]M. Jafri, S. Ansari, M. Alqahtani and J. Shay. «Roles of telomeres and telomerase in cancer, and advances in telomerase-targeted therapies. Genome Medicine., 2016. [Online]. Available: https://doi.org/10.3390/ijms19020482. [4]J. Huppert and S. Balasubramanian. «G-quadruplexes in promoters throughout the human genome». 35, 406–413. 2007. [Online]. Available: https://doi.org/10.1016/j.bbapap.2017.06.012. [5]S. Joy, Vijayakumar, S. Choi and H. Sunhye. «Role of computer-aided drug design in modern drug discovery». Archives of Pharmacal Research. 2015. [Online]. Available: https://doi.org/10.1007/s12272-015-0640-5. [6]S. Asamitsu, S. Obata, Z. Yu, T. Bando and H. Sugiyama. «Recent Progress of Targeted G-Quadruplex-Preferred Ligands Toward Cancer Therapy». Molecules, 24, 429. 2019. [En línea]. Available: https://doi.org/10.3390/molecules24030429. [7]R. Monsen and J. Trent. «Biochimie G-quadruplex virtual drug screening : A review». Biochimie, 152, 134–148. 2018. [Online]. Available: https://doi.org/10.1039/c9cc06748e. [8]J. Beauvarlet, P. Bensadoun, E. Darbo, G. Labrunie, E. Richard, I. Draskovic and M. Djavaheri-mergny. «Modulation of the ATM / autophagy pathway by a G-quadruplex ligand tips the balance between senescence and apoptosis in cancer cells». 1–18. 2019. [Online]. Available: https://doi.org/10.1093/nar/gkz095. [9].Z. Crees, J. Girard, Z. Rios, G. Botting, K. Harrington and C. Shearrow. « Oligonucleotides and G-quadruplex stabilizers: targeting telomeres and telomerase in cancer therapy».2014. [Online]. Available: https://doi.org/10.2174/1381612820666140630100702. [10].M. Meier, A. Moya-torres, N. Krahn, M. Mcdougall, L. Orriss, E. Mcrae and T. Patel. «Structure and hydrodynamics of a DNA Gquadruplex with a cytosine bulge»., 1–13. 2018. [Online]. Available: https://doi.org/10.1093/nar/gky307. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:FDA Releases Draft Guidance on Regulation of Genetically Engineered AnimalsJohn P. Gluck (bio) and Mark T. Holdsworth (bio)On 18 September 2008, the U.S. Food and Drug Administration (FDA) issued a draft set of guidelines for those involved in developing genetically engineered animals with heritable recombinant DNA (rDNA) constructs and is requesting comment from industry and the public about their content. The document does not impose new regulations but details (...) how existing laws and regulations apply to genetically engineered (GE) animals and offers advice to developers on how to negotiate the laws in the most efficient and productive manner. The draft guidance document is not legally enforceable at this juncture, but the guidelines are recommendations reflecting the FDA's "current thinking on a topic."The modification of GE animals being developed for commercialization, which are the focus of the document, fall into six categories: modifications intended to (1) enhance food quality—e.g., faster growing fish and meats with better nutritional profiles; (2) improve animal health via increased resistance to disease—e.g., mastitis in dairy cattle and Bovine Spongiform Encephalopathy (BSE); (3) create so-called "biopharm" animals capable of producing therapeutic products such as insulin, clotting factors, and tissues for human transplantation; (4) reduce the barriers to human animal interaction—e.g., hypoallergenic pets; (5) develop valid animal models of human disease—e.g., Parkinson's disease, Lesh-Nyhan's syndrome, and cancer; and (6) improve production of industrial or consumer products such as fiber. The timing of the guidelines coincides with the FDA's belief in an expected boon in the number of GE animals approaching the stage of commercialization.The FDA's involvement in the approval process emerges from the new animal drug provisions of the Federal Food Drug and Cosmetic Act and the definition of what constitutes a drug. The Act defines a new animal drug as "an article (other than food) intended to affect the structure or any function of the body of... animals." A rDNA construct intended to affect the structure or function of an animal meets the definition of a new animal drug, regardless of whether the resulting GE animals are intended for human food or the production of pharmaceuticals or any other substances. [End Page 393]Before proceeding to a review of the draft guidelines, it is important briefly to set the controversies around GE animals in historical and ethical context.The Ethical DebateFrom its inception, the intentional genetic modification or genetic engineering of molecules, plants, and animals by the techniques of gene splicing has consistently elicited strong responses from both the scientific community and the public. There are some data to suggest that although the concerns of scientists fall primarily into the category of possible biohazards, those of the public also reflect great concern about the intrinsic moral issues, such as whether there is something fundamentally wrong with this line of work, making it a form of forbidden knowledge (see, e.g., Gaskell 1997). When news of Paul Berg's attempts in 1970 to graft the primate tumor virus (SV 40) onto the intestinal tract bacteria Escherichia coli for the purpose of studying how normal cells may be transformed into cancerous cells was shared with colleagues, he was strongly encouraged to reflect on the potential public health risks if somehow the altered bacteria broke containment and entered the environment. Thanks to Berg's leadership, these concerns soon resulted in conferences held in Asilomar, California, and New Hampton, New Hampshire, where the ethical responsibilities of microbiologists involved in this research were discussed. These initial discussions resulted in what has come to be known as "The Moratorium Letter" (Shattuck 1996) published in the journal Science in 1974. This letter, signed by 11 leaders in the field, actually recommended restrictions on several types of experiments that were considered to be particularly risky and stated "that adherence to our major recommendations will entail postponement or possibly abandonment of certain types of scientifically worthwhile experiments" (Berg 1974). An international conference on the issues came to similar conclusions about the need for a research moratorium for the sake of public safety. Recommendations arising from conference participants led to the formation of the National Institutes... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Open Letter to the Enemy:Jean Genet's Holy WarSteven Miller (bio)J.G. seeks, or is searching for, or would like to discover, never to uncover him, the delicious enemy, quite disarmed, whose equilibrium is unstable, profile uncertain, face inadmissible, the enemy broken by a breath of air, the already humiliated slave, ready to throw himself out the window at the least sign, the defeated enemy: blind, deaf, mute. With no arms, (...) no legs, no stomach, no heart, no sex, no head, all told a complete enemy, already bearing all the marks of my bestiality that now need never be used (too lazy anyway). I want the total enemy, with immeasurable and spontaneous hatred for me, but also the subjugated enemy, defeated by me before he even knows me. Not to be reconciled with me, in any case. No friends. Above all, no friends: a declared enemy, but not a tortured one. Clean, faultless. What are his colors? From a green as tender as a cherry to an effervescent violet. His size? Between the two of us, he presents himself to me man to man. No friends. I seek an inadequate enemy, one who comes to capitulate. I will come at him with all that I can muster: whacks, slaps, kicks, I will feed him to starving foxes, make him eat English food, attend the House of Lords, be received at Buckingham Palace, fuck Prince Phillip, and be fucked by him, live for a month in London, dress like me, sleep in place of me, live in place of me: I seek the declared enemy.This brief text was not published until 1991. It was almost published in 1975 in a book of homages to William Burroughs and Brion Gysin, and was to have been preceded with the following explanation of its origins, written by Gysin:In Tangiers in 1970, Jean Genet asked me what ever happened to the English underground newspaper The International Times. When I responded that the editors were having trouble with the law in England because of the newspaper's ads for "special friendships" [amitiés particulières], he exclaimed: "Why friends? Personally, I am looking for a suitable enemy [un ennemi à ma taille]." He then wrote the following text...[qtd. in Genet, ED 9]Hence the anecdotal reason for the form of the personal advertisement. In 1991 the text was published—according to Genet's wishes—as the first page of the posthumous collection of his political writings and interviews, L'ennemi déclaré.1 Such a placement demands more than an anecdotal explanation. What is a personal ad doing as the preface to a collection of political writings? Albert Dichy, the editor of the collection, notes that this text has the status of an exception: "the text that opens the collection does not belong to the group of writings that make up the book as a whole" [ED 331]. Each of the other texts emerges from Genet's involvement in specific political events (the [End Page 85] 1968 Chicago Democratic National Convention, the Chatila massacre) or with named political figures and groups (the Palestinians, the Black Panthers, the Baader-Meinhof group, George Jackson, Angela Davis), whereas the form of the ad that he wrote for Gysin seems to number it among his literary works. Nonetheless, this eccentric text remains the first in the collection—"en tête de l'ouvrage," is Dichy's phrase—and gives the book its title. Rather than serving as an introduction to the other texts, this text, by virtue of its exceptional form, is a challenge addressed directly to the public. Dichy himself is the first to accept this challenge. His editorial notice passes quickly from anecdote to interpretation:The fact that Genet wished to see the publication of his political articles preceded by this precise text has an unavoidable impact, not only on the identity of the author, now partially assimilable to a fictional character ("J.G. cherche, ou recherche..."), but also on the way in which we read the different texts in the collection, now that we have been given the general tone and the note of secrecy.[ED 331]These suggestions are apt enough... (shrink)

The ontogeny of the vertebrate retina has been a topic of interest to developmental biologists and human geneticists for many decades. Understanding the unfolding of the genetic program that transforms a field of progenitors cells into a functionally complex and multi‐layered sensory organ is a formidable challenge. Although classical genetic studies succeeded in identifying the key regulators of retina specification, understanding the architecture of their gene network and predicting their behavior are still a distant hope. The emergence of (...) next‐generation sequencing platforms revolutionized the field unlocking the access to genome‐wide datasets. Emerging techniques such as RNA‐seq, ChIP‐seq, ATAC‐seq, or single cell RNA‐seq are used to characterize eye developmental programs. These studies provide valuable information on the transcriptional and cis‐regulatory profiles of precursors and differentiated cells, outlining the trajectories that connect each intermediate state. Here, recent systems biology efforts are reviewed to understand the genetic programs shaping the vertebrate retina. (shrink)

BackgroundLarge-scale genetic data sets are frequently shared with other research groups and even released on the Internet to allow for secondary analysis. Study participants are usually not informed about such data sharing because data sets are assumed to be anonymous after stripping off personal identifiers.DiscussionThe assumption of anonymity of genetic data sets, however, is tenuous because genetic data are intrinsically self-identifying. Two types of re-identification are possible: the "Netflix" type and the "profiling" type. The "Netflix" type (...) needs another small genetic data set, usually with less than 100 SNPs but including a personal identifier. This second data set might originate from another clinical examination, a study of leftover samples or forensic testing. When merged to the primary, unidentified set it will re-identify all samples of that individual.Even with no second data set at hand, a "profiling" strategy can be developed to extract as much information as possible from a sample collection. Starting with the identification of ethnic subgroups along with predictions of body characteristics and diseases, the asthma kids case as a real-life example is used to illustrate that approach.SummaryDepending on the degree of supplemental information, there is a good chance that at least a few individuals can be identified from an anonymized data set. Any re-identification, however, may potentially harm study participants because it will release individual genetic disease risks to the public. (shrink)

The author explores the ethics of decision-making and confidentiality in donor insemination through the narrative of her experience having two children with a sperm donor who was later discovered to carry a gene for a serious heart disease, hypertrophic cardiomyopathy. Contrasting individualist and communitarian ethical models, she questions understandings of confidentiality that hamper the construction of a medical family tree, especially when prognosis and treatment depend on the larger familial profile of the disease. She also emphasises that for the patient (...) family the discovery of biological family through the lens of transmitted illness leads to a shift in family identity that goes beyond the purely medical. (shrink)

This paper utilizes Iris Marion Young’s critical, post-9/11 reading of Thomas Hobbes, as a theorist of authoritarian government grounded in fear of threat (Young 2003). Applying Young’s reading of Hobbes to the high-profile ethicist Julian Savulescu’s advocacy of genetic enhancement reveals an underlying unjust discrimination in Savulescu’s use of patriarchal protector–protected analogies between family and state. First, the paper shows how Savulescu’s concept of procreative beneficence, in which parents use genetic selection to have children who will have the (...) best lives possible, is unjustly discriminatory against marginalized groups. Increasingly, however, he has invoked public security to justify genetic interventions. In recent speeches, Savulescu has argued a global state of emergency is developing due to a combination of the global environmental crisis, the threat of bioterrorism, and the failure of liberalism. To help deal with this emerging state of emergency, Savulescu advocates an unjustly discriminatory array of genetic-based governance practices, including detention and segregation. (shrink)