Users and uses of the biopolitics of consent: a study of DNA banks.

In this chapter we intend to examine from a sociological perspective the view of a number of participants in a biobank project on the informed consent procedure they were asked to go through. Having carried out observations, conducted interviews and collected questionnaires as part of an empirical survey, we have concluded that a number of participants feel somewhat suspicious where the procedure is concerned. At least they express caution on its ability to actually serve their autonomy and freedom of choice. As they attempt to detect its potentially perverse effects in terms of power asymmetry and the consequences of diverse responsibilities being devolved to them, their perception of it is far from idealized even if they do not contest it radically. This circumambulatory tour of the users' point of view, which will prove useful to improve communication with the general public, can also be of help in understanding how the contemporary evolutions of biopolitics are perceived

Mise en scène, mise en acte de la science.: Une étude de cas sur des diaporamas de vulgarisation.

International audienceLes discours de vulgarisation scientifique loin de s'arrêter à une simple transmission de connaissances mettent aussi en scène cette transmission elle-même. Ces discours comportent par ailleurs souvent une présentation sous-jacente de systèmes axiologiques, présentation qui peut faire de même l'objet d'une mise en scène comme cela a pu être observé lors d'une étude sociologique portant sur des diaporamas de vulgarisation. L'analyse de la projection de ces derniers amène par ailleurs à faire remarquer que la mise en scène peut se doubler d'une mise en acte de systèmes axiologiques dans la mesure où une relation avec le public se voit instaurée sur la base des normes et des valeurs développées par le conférencier. Ainsi au-delà de montrer ce qu'est la science, ces diaporamas tentent-ils de conduire le public vers la science

Biobanks for Genomics and Genomics for Biobanks

Biobanks include biological samples and attached databases. Human biobanks occur in research, technological development and medical activities. Population genomics is highly dependent on the availability of large biobanks. Ethical issues must be considered: protecting the rights of those people whose samples or data are in biobanks (information, autonomy, confidentiality, protection of private life), assuring the non-commercial use of human body elements and the optimal use of samples and data. They balance other issues, such as protecting the rights of researchers and companies, allowing long-term use of biobanks while detailed information on future uses is not available. At the level of populations, the traditional form of informed consent is challenged. Other dimensions relate to the rights of a group as such, in addition to individual rights. Conditions of return of results and/or benefit to a population need to be defined. With ‘large-scale biobanking’ a marked trend in genomics, new societal dimensions appear, regarding communication, debate, regulation, societal control and valorization of such large biobanks. Exploring how genomics can help health sector biobanks to become more rationally constituted and exploited is an interesting perspective. For example, evaluating how genomic approaches can help in optimizing haematopoietic stem cell donor registries using new markers and high-throughput techniques to increase immunogenetic variability in such registries is a challenge currently being addressed. Ethical issues in such contexts are important, as not only individual decisions or projects are concerned, but also national policies in the international arena and organization of democratic debate about science, medicine and society

Linkage disequilibrium organization of the human KIR superlocus: implications for KIR data analyses

An extensive family-based study of linkage disequilibrium (LD) in the killer cell immunoglobulin-like receptors (KIR) cluster was performed. We aimed to describe the LD structure in the KIR gene cluster using a sample of 418 founder haplotypes identified by segregation in a group of 106 families from Northern Ireland. The LD was studied at two levels of polymorphism: the structural level (presence or absence of KIR genes) and the allelic level (between alleles of KIR genes). LD was further assessed using the predictive value of one KIR polymorphism for another one in order to provide an interpretative framework for the LD effect in association studies. In line with previous research, distinct patterns of KIR genetic diversity within the genomic region centromeric to KIR2DL4 (excluding KIR2DL4) and within the telomeric region including KIR2DL4 were found. In a comprehensive PPV/NPV-based LD analysis within the KIR cluster, robust tag markers were found that can be used to identify which genes are concomitantly present or absent and to further identify groups of associated KIR alleles. Several extended KIR haplotypes in the study population were identified (KIR2DS2*POS–KIR2DL2*001–KIR2DL5B*002–KIR2DS3*00103–KIR2DL1*00401; KIR2DL4*011–KIR3DL1/S1*005–KIR2DS4*003–KIR3DL2*003; KIR2DL4*00802–KIR3DL1/S1*004–KIR2DS4*006–KIR3DL2*005; KIR2DL4*00801–KIR3DL1/S1*00101–KIR2DS4*003–KIR3DL2*001; KIR2DL4*00103–KIR3DL1/S1*008–KIR2DS4*003–KIR3DL2*009; KIR2DL4*00102–KIR3DL1/S1*01502/*002–KIR2DS4*00101–KIR3DL2*002; KIR2DL4*00501–KIR3DL1/S1*013–KIR2DL5A*001–KIR2DS5*002–KIR2DS1*002–KIR3DL2*007). The present study provides a rationale for analyzing associations of KIR polymorphisms by taking into account the complex LD structure of the KIR region

Populational Genetic Databases Is a Specific Ethical and Legal Framework Necessary?

[À l'origine dans / Was originally part of : CRDP - Droit, biotechnologie et rapport au milieu]Recent scientific advances and new technological developments, most notably the advent of bio-informatics, have led to the emergence of genetic databases with particular characteristics and structures. Paralleling these developments, there has been a proliferation of ethical and legal texts aimed at the regulation of this new form of genetic database

Les bases de données génétiques populationnelles : Un encadrement éthique Et juridique spécifique nécessaire ?

[À l'origine dans / Was originally part of : CRDP - Droit, biotechnologie et rapport au milieu]Les récentes avancées scientifiques et les nouveaux développements technologiques, notamment l’avènement de la bioinformatique, ont conduit à l’émergence de bases de données génétiques aux caractéristiques et structures différentes, et, parallèlement à la prolifération de textes éthiques et juridiques visant à en réglementer les aspects

New classification of HLA-DRB1 alleles in rheumatoid arthritis susceptibility: a combined analysis of worldwide samples

IntroductionRheumatoid arthritis (RA) is a complex polygenic disease of unknown etiology. HLA-DRB1 alleles encoding the shared epitope (SE) (RAA amino acid pattern in positions 72 to 74 of the third hypervariable region of the DRbeta1 chain) are associated with RA susceptibility. A new classification of HLA-DRB1 SE alleles has been developed by Tezenas du Montcel and colleagues to refine the association between HLA-DRB1 and RA. In the present study, we used RA samples collected worldwide to investigate the relevance of this new HLA-DRB1 classification in terms of RA susceptibility across various Caucasoid and non-Caucasoid patients.MethodsEighteen subsamples were defined from a total number of 759 cases and 789 controls and grouped in 10 samples on the basis of their ethnic origin. HLA-DRB1 alleles were divided into five groups (S1, S2, S3D, S3P, and X) according to the new HLA-DRB1 allele classification. The whole analysis was performed by comparing carrier frequencies for the five HLA-DRB1 allele groups between RA patients and controls across the 10 Caucasoid and non-Caucasoid samples. The Mantel-Haenszel method of meta-analysis provided a global odds ratio (OR) estimate with 95% confidence interval (CI).ResultsA positive association with RA susceptibility was found for S2 allele carriers (OR 2.15, 95% CI 1.54 to 3.00; p < 10(-5)) and S3P allele carriers (OR 2.74, 95% CI 2.01 to 3.74; p < 10(-5)). A negative association was found for S1 alleles (OR 0.60, 95% CI 0.48 to 0.76; p < 10(-4)) and X alleles (OR 0.58, 95% CI 0.39 to 0.84; p = 4 x 10(-3)). No significant association was highlighted for the S3D group of alleles (OR 0.89, 95% CI 0.69 to 1.14; p = 0.89). The complementary genotype analysis fit with the genotype risk hierarchy previously reported in Caucasoid RA patients.ConclusionSo far, the present study is the first attempt to investigate the relevance of this new HLA-DRB1 classification in terms of RA susceptibility on both Caucasoid and non-Caucasoid samples. Our results support the hypothesis of a differential role played by different HLA-DRB1 allele groups in RA susceptibility across different ethnic backgrounds and confirm the interest of such an HLA-DRB1 classification in differentiating predisposing and protective alleles

Towards new tools for bioresource use and sharing

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The impact of European embryonic stem cell patent decisions on research strategies

No description supplie

A new classification of HLA-DRB1 alleles differentiates predisposing and protective alleles for autoantibody production in rheumatoid arthritis

The HLA-DRB1 gene was reported to be associated with anticitrullinated protein/peptide autoantibody (ACPA) production in rheumatoid arthritis (RA) patients. A new classification of HLA-DRB1 alleles, reshaping the shared epitope (SE) hypothesis, was recently found relevant in terms of RA susceptibility and structural severity