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This article compares research on biological embedding and the embodiment of social experiences, two concepts proposed in the 1990s to introduce a new perspective on the social production of health inequalities. We draw on Ludwig Fleck's concept of 'thought style' (1935/2008) to question the possible emergence of a common research program around the processes by which the social becomes biological.We compiled a corpus of 322 articles referring to either biological embedding or to the embodiment of social experiences, identified in the Web of Science core collection and published from 1990 to 2021. We analyzed the articles' use of these concepts using scientometric indicators and qualitative content analysis.Initial differences between the research agendas associated with biological embedding and embodiment are strengthened as both concepts circulate around scientific communities studying the social production of health inequalities. Thought styles formed around embedding and embodiment differ significantly in terms of shared references, sets of methods and research questions, and policy recommendations. Research on biological embedding forms a thought style shared by researchers in the biomedical and public health sciences. Conversely, the concept of embodiment of social experiences connects perspectives from biomedical, public health, human and social sciences, and gathers three thought styles, one identical to that of biological embedding and two formed in social epidemiology and in medical anthropology.Acknowledging the differences between the concepts and divergences in their evolution provides an opportunity for identification of topics where thought styles are either complementary or in tension.

Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people’s intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered. This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus.

BackgroundEpidemiologists need tools to measure effects of gender, a complex concept originating in the humanities and social sciences which is not easily operationalized in the discipline. MethodsWe conducted a conceptual analysis and applied causal and mediation analysis methodology to standard questions in order to propose a methodologically appropriate strategy for measuring sex and gender effects in health.ResultsWe define gender as a set of norms prescribed to individuals according to their attributed-at-birth sex. Gender pressure creates a systemic gap, at population level, in behaviors, activities, experiences, etc. between men and women. A pragmatic individual measure of gender would correspond to the level at which an individual complies with a set of elements constituting femininity or masculinity in a given population, place and time. However, defining and measuring gender is not sufficient to isolate the effects of sex and gender on a health outcome. We should also think in terms of pathways to define appropriate analysis strategies. Gender could also be examined as a mechanism rather than through its realization in the individual, by considering it as an interaction between sex and environment. ConclusionsBoth analytical strategies have limitations relative to the impossibility of reducing a complex concept to a single or a few measures, and of capturing the entire effect of the phenomenon. However, these strategies could lead to more accurate and rigorous analyses of the mechanisms underlying health differences between men and women, and ultimately limit the sex and/or gender bias encountered in epidemiological and clinical research studies.

Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

Background Interdisciplinary research and teaching often present similar challenges to investigators and teachers in higher education settings. Capturing and harnessing disciplinary knowledge from different fields to strengthen the process is desirable. However, in practice, this may be difficult to achieve. In this paper we set out a methodology developed in both research and teaching settings which has successfully brought researchers and participants from different disciplinary backgrounds together to work within a life course framework. Methods The methodology centres on using what we will describe as vignettes, or descriptive case histories and is divided into three stages. In stage 1 participants work together to write a vignette based on instructions. In stage two, participants work together in a group to analyse and deconstruct a different vignette. Here In stage 3 all groups present and discussed the analysed vignettes. Results We provide results from stage 1 on a specific vignette written by a group of participants. Here the participants get to grips with general life course concepts. In stage 2 participants learn about life course principles and constructs by deconstructing and analyzing a vignette. In stage 3 the participants are encouraged to shift from thinking about individuals, to population dynamics. Discussion We discuss the strengths and limitations of this method within the context of interdisciplinary life course research and teaching in higher education. Conclusion Using vignettes to both construct and deconstruct life courses has proved a useful tool for deriving new research questions and research material within the framework of life course theory.

This report is prepared within the context of a European project called SIENNA, which was selected to fulfil the grant call SWAFS-18-2016 . The aims are to identify and present ELSI in human genetics and genomics, both present and emerging issues with a relatively short time horizon. First, we report a presentation of the SIENNA approach to ethical analysis, situated in the landscape of other existing frameworks developed for studying ELSI of genomics. We discuss the merits and challenges of different types of investigations pursued in SIENNA: foresight analysis; overview of ELSI of genomics in 11 countries; public survey in 11 countries; and focusgroups in 5 countries. Secondly, we provide an extensive ethical analysis of human genomics . Inparticular, we focus on the ethical issues pertaining to two areas of human genomics: 1) the study of the genome as currently performed through high throughput sequencing (e.g. with tools such as next generation sequencers); and 2) gene editing (or genome editing: for example, as performed with tools such as CRISPR-Cas9 and other gene editing technologies). The aim of the report is not to make recommendations or present solutions, but only to identify and present ELSI pertaining to genomic technologies within their context of application. The report is based on a description of such technologies in previous deliverable D.2.1 and intends to provide a basis for our next report D.2.7, in which we aim to discuss an ethical framework for human genomics. While the sheer amount of work outlined in, and conducted for, the formal SIENNA approach is laudable, we question whether it is a requirement to use it to obtain the results herein (i.e. could any other ELSI approach have resulted in the same results); we also question whether it is well adapted for the analysis of the ELSI of human genomics in particular. Moreover, we present some difficulties with attempting to include empirical work into normative analyses; beyond the theoretical reasons, we have also experienced logistical issues relating to the specific types of expertise needed to carry out this work and the challenges raised by trying to obtain such expertise via sub-contracting with a for-profit social and policy research company outside of the consortium. Finally, we remain sceptical of too much unwarranted emphasis on technologies as oppose to their uses, since in genomics, the technologies are constantly changing (from PCR machines to next-generation sequencers etc.) and it is how these technologies affect practice (e.g. clinical testing, research, and other areas) that tends to be the heart of the ethical tension.

Objectives To explore older adults' reasons for participating in a multinational eHealth prevention trial, and compare motivations between countries. Design Cross-sectional mixed methods research using quantitative and qualitative approaches (the ACCEPT-HATICE study). Setting and Participants Substudy conducted during the recruitment phase of an 18-month RCT testing the efficacy of an eHealth intervention for self-management of risk factors for cardiovascular disease (CVD) and cognitive decline in older adults in Finland, France, and the Netherlands. Participants were 343 dementia-free community dwellers aged 65+ with basic computer literacy and either ≥2 cardiovascular risk factors or a history of CVD/diabetes. Measures Online questionnaire (quantitative data) and semistructured interviews (qualitative data). Results Contributing to scientific progress, wanting to improve one's lifestyle, and benefiting from additional medical monitoring were the predominant reasons for participating. Altruistic reasons were particularly relevant among the French, whereas Finnish and Dutch participants mainly emphasized the benefits of lifestyle changes and regular medical checkups. During interviews, preventing functional dependency emerged as a key underlying motivation. Although some trial design features influenced the decision to participate, the use of an eHealth intervention was not an important motivator in this population. Conclusions/Implications Altruism and personal benefits motivated older adults to participate in the trial; emphasizing such aspects could facilitate recruitment in future RCTs. Additional medical monitoring may be particularly appealing when access to public health care is considered limited. Furthermore, maintaining autonomy and preventing functional dependency emerged as a key concern in this population of young older adults.

Pour des raisons qui tiennent autant aux pratiques d’intervention sur les corps des participants à la recherche, qu’aux cadres conceptuels historiquement constitués dans l’éthique biomédicale, la personne est au centre de l’éthique de la recherche depuis les origines de la discipline. Pourtant l’émergence de nouvelles pratiques, notamment en génomique humaine, nous invite aujourd’hui à envisager les demandes de protection, d’autonomie et de respect à un autre niveau : celui du groupe humain. Il s’agit par conséquent de préciser en quoi le « groupe humain » pourrait constituer un sujet pertinent de l’éthique de la recherche en génomique puis de nous demander si cette proposition est légitime, faisable et désirable. For reasons that relate as much to interventional practices as to the conceptual frameworks historically embodied in biomedical ethics, the person has been at the center of the research ethics since the origins of discipline. Yet the emergence of new practices, especially in human genomics, invites us to consider the demands of protection, autonomy and respect on another level: that of the human group. It is therefore necessary to clarify how the "human group" could be a relevant topic in the ethics of genomics research and then ask if this proposal is legitimate, feasible and desirable.

Le terme de biobanque designe une collection d’echantillons biologiques associes a des donnees personnelles, destinee a servir la recherche scientifique. Les pratiques de recueil et de conservation du materiel biologique sont en constante evolution. Elles s’adaptent a la fois aux contextes changeants des institutions scientifiques, aux innovations d’ordre technologique et a l’emergence de nouvelles formes d’organisations. Ces adaptations doivent aussi permettre de valoriser les collections en multipliant les usages possibles des ressources biologiques et leur reutilisation future.Les orientations favorisant le developpement des biobanques sur le long terme posent cependant probleme du point de vue de l’ethique de la recherche biomedicale. Parce que nul n’est en mesure de predire pour quelle etude specifique les echantillons et donnees recueillis au sein des biobanques serviront precisement dans l’avenir, les eventuels participants des « nouvelles biobanques » se trouvent dans l’impossibilite de consentir a des recherches dont on ne peut anticiper ni la nature, ni la finalite. Les incertitudes relatives aux directions, methodes et enjeux de la recherche a venir empechent de proposer une procedure de « consentement eclaire » adaptee au present.Alors que l’anticipation constitue un enjeu technique et scientifique de taille dans la realisation des « nouvelles biobanques », nous proposons de l’envisager comme une dimension a part entiere de l’ethique appliquee aux biobanques. L’etude de pratiques scientifiques qui inscrivent les biobanques dans le temps long nous amene a penser le lien entre organisation, technologie et ethique.

Genomic technologies are developing at a time when greater public involvement in research and clinical governance is sought. To this end, empirical bioethics studies, although conceptualized as academic endeavors, may draw on the inclusion of laypeople to justify informing policy. Doing so, they face similar concerns as those addressed to public consultations which cannot be termed democratic a priori and may reinforce the authority of experts. We reflect on these concerns in the process of analyzing the results of a qualitative analysis of eight focus groups (64 participants) held in France during 2010–2012, designed to understand laypeople's views of the ethical debates surrounding genomic medicine. We examine how the notions of “lay” and “expert” play in the framework of the study and how participants situate themselves along this divide. This understanding of the social context in which the publics are situated enables a more reflexive and accurate ethical analysis.

This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people's engagement with biobanks; concerns about privacy and data security, and trust in the socio-political system, key actors and institutions involved in biobanks. We argue that the biobank community needs to acknowledge the impact of these factors if they are to successfully develop and integrate biobanks at a pan-European level. © 2013 Macmillan Publishers Limited. All rights reserved.

Under the auspices of a multi-national European scientific project involving whole genome sequencing, GEUVADIS, we set out to investigate the attitudes of the participating scientists of having their own genome sequenced. The views of such researchers on this subject have not been fully explored before and we utilized questionnaires and discussion groups to elicit their opinions. Many said that it was the first time that they had an opportunity to discuss ethical and social issues about sequencing. The many ongoing multi-national science projects present a good opportunity for social science research involving scientists and would benefit from rigorous research methodology, taking into account any language barriers.

High throughput genetic technologies offer the opportunity to gain precision in the diagnosis of numerous diseases and to better understand their molecular basis. However they bring new practical and ethical challenges, some of which are foreseeable and therefore amenable to the timely adoption of strategies to ensure that they are introduced and used in a just and beneficial manner. One way of foreseeing these challenges is to examine technologies that have already been transferred from research to the clinical setting in order to identify the ethical issues and develop strategies to move forward in an ethical way. One such model for new genetic technologies is Array Comparative Genomic Hybridization (aCGH), which has been gradually adopted in recent years as a standard technique in clinical genetics. CGH challenging current clinical practice regarding the detection and diagnosis of human chromosome abnormalities in intellectual disability (ID) and congenital malformations in children. Experience with aCGH has shown that it delivers an unprecedented volume of information for patients, counsellors, and health care providers but it also raises specific ethical challenges which can serve as signposts for potential issues with future, even more detailed, genetic technologies. These issues are described and illustrated through case histories, and their consequences for the patient-clinician relationship in genetic consultation are discussed. The consequences of employing this technology, as compared to the more traditional genetic diagnostic methods used in cases of intellectual disability are categorised into issues linked to 1) the vulnerable nature of patients who are mostly children, mentally retarded people or “future parents”; 2) the way in which information is controlled at each stage of the process, as a function of its potential relevance to the clinical condition being diagnosed, 3) the information related to conditions other than ID or “incidental findings” that become the rule with high throughput technologies. The issues highlighted by the clinical scenarios discussed here can be expected to occur with even greater frequency in the future as whole exome and whole genome sequencing are introduced. Building on our experience with the transfer and adoption of aCGH into clinical genetics, we have developed a grid of points to be considered when translating such technologies from research to clinic.

Introduction – The social distribution of SARS-CoV-2 infection among men and women and the role of gender have been largely neglected in France, mainly due to a lack of data. The aim of this article is to describe and analyse the risk of SARS-CoV-2 infection with respect to sex, and the influence of other social factors, especially occupation, in this relationship. Methods – We used data from the “COVID-19 Barometer”. Each week, a cross-sectional survey was administered via Internet to a sample of 5,000 people representative of the French metropolitan population, aged 18 and over, established by the quota method. A total of 25,001 participants were questioned between 7 April and 11 May 2020. The relationship between sex, occupation and SARS-CoV-2 infection was studied using multi- variate nested logistic regression modelling. Results – During the first lockdown of spring 2020 in France, women reported a medical diagnosis of SARS-CoV-2 infection more often than men (4% vs 3.2%). However, when taking into account the relationship between sex and socioeconomic variables (occupation), the additional risk of infection for women was no longer observed. Specifically, while men in executive positions were more likely to report a diagnosis of infection compared to those in other occupations, this association was not observed amongst women. Conclusions – The relationship between gender and SARS-CoV-2 infection was modified by the inclusion of occupation, suggesting the distribution of occupations by sex is important to consider. The differences in the risk of infection between men and women therefore require further exploration with regard to socioeconomic factors., Introduction – La distribution sociale de l’infection au SARS-CoV-2 et le rôle du genre ont été largement négligés en France, principalement en raison du manque de données. L’objectif de cet article est d’analyser le risque d’infection au SARS-CoV-2 en fonction du sexe, en étudiant l’influence d’autres dimensions sociales dans cette relation, en particulier la profession.Méthodes – Nous avons utilisé les données du Baromètre Covid-19. Chaque semaine, une vague de sondage était administrée sur Internet auprès d’un échantillon de 5 000 personnes représentatif de la population française métropolitaine âgée de 18 ans et plus, établi par la méthode des quotas. Au total, 25 001 participants ont été interrogés entre le 7 avril et le 11 mai 2020. La relation entre le sexe, la profession et l’infection au SARS-CoV-2 a été étudiée par des modèles de régression logistique emboités.Résultats – Durant la période du premier confinement en 2020 en France, les femmes déclarent plus souvent que les hommes un diagnostic médical d’infection au SARS-CoV-2 (4% vs 3,2%). Cependant, lorsque l’on prend en compte la relation entre le sexe et les professions et catégories socioprofessionnelles, le sur-risque d’infection chez les femmes ne s’observe plus. Plus spécifiquement, les hommes cadres sont plus à risque de déclarer l’infection que ceux appartenant aux autres professions et catégories socioprofessionnelles, ce qui n’est pasobservé chez les femmes.Conclusions – Le lien entre sexe et infection au SARS-CoV-2 est modifié par la prise en compte de la profession, suggérant que la distribution des professions par sexe est une dimension importante à considérer. Les différences de risque d’infection entre hommes et femmes méritent donc d’être analysées au regard des facteurs socioéconomiques et des rôles sociaux qui leur sont dévolus.

This report examines how the law currently responds to challenges in the area of genetics and genomics, and identifiesthe challenges, limitations and gaps that emerge.It also identifieskey human rights norms and regulatory approaches that could be examined further for shaping legal responses to the new and emerging technology in the area with due regard to competences and authority of various actors regulating/contributing to the shaping the regulatory environment in the area. Itanalyses the ethical concerns, scrutinizes the legal and human rights responses in the area of genomics at the international and regional human rights legal orders, and the EU;carries out comparative analysis in selected EU Member States and non-EU countries, and surveys the legal responses, academic legal discussions and legal developments in the areas of concern;examines national comparative perspectives against the international and regional norms and human rights standards;identifies key human rights and legal challenges that emerge regarding genetics and genomics and shows the convergences and distinctions in the regulation of genomics and the challenges this presents for future innovation.

This Handbook brings together and describes the SIENNA project’s theoretical and methodological approaches for ethical, legal and human rights analyses, societal acceptance and awareness studies, development of research ethics protocols and professional ethical codes. This Handbook is a reference source for work packages 2 (genomics), 3 (human enhancement) 4 (AI and robotics), and 5 (the consortium’s proposals), and it will help to ensure theoretical coherence and methodological consistency. The Handbook also offers references to guidance (where to go) about other project matters, such as research ethics and data management, internal communication tools and protocols, event organisation, quality assurance, citations and formatting, dissemination and communications approach, exploitation, and project sustainability.&nbsp