Biological embedding vs. embodiment of social experiences: How these two concepts form distinct thought styles around the social production of health inequalities.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Considering sex and gender in Epidemiology: a challenge beyond terminology. From conceptual analysis to methodological strategies.

BACKGROUND: Epidemiologists need tools to measure effects of gender, a complex concept originating in the social sciences which is not easily operationalized in the discipline. Our aim is to clarify useful concepts, measures, paths, effects, and analytical strategies to explore mechanisms of health difference between men and women. METHODS: We reviewed concepts to clarify their definitions and limitations for their translation into usable measures in Epidemiology. Then we conducted methodological research using a causal framework to propose methodologically appropriate strategies for measuring sex and gender effects in health. RESULTS: (1) Concepts and measures. We 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. (2) Main analytical strategy. Defining and measuring gender are not sufficient to distinguish the effects of sex and gender on a health outcome. We should also think in terms of mechanisms, i.e., how the variables are linked together, to define appropriate analytical strategies. A causal framework can help us to conceptualize "sex" as a "parent" of a gender or gendered variable. This implies that we cannot interpret sex effects as sexed mechanisms, and that we can explore gendered mechanisms of sex-differences by mediation analyses. (3) Alternative strategy. Gender could also be directly examined as a mechanism, rather than through a variable representing its realization in the individual, by approaching it as an interaction between sex and social environment. CONCLUSIONS: Both 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 of gender. However, these strategies could lead to more accurate analyses of the mechanisms underlying health differences between men and women.

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries.

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.

Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.

BACKGROUND: Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. METHODS: We analyse 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, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. RESULTS: Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data-endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. CONCLUSIONS: Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.

Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

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.

Experiences of dementia and attitude towards prevention: a qualitative study among older adults participating in a prevention trial.

BACKGROUND: A better insight into older adults' understanding of and attitude towards cognitive disorders and their prevention, as well as expectations and reasons for participation in prevention trials, would help design, conduct, and implement effective preventive interventions. This qualitative study aimed at exploring the knowledge and perceptions of cognitive disorders and their prevention among participants in a prevention trial. METHODS: Semi-structured interviews were conducted among the participants of a multinational randomised controlled trial testing the efficacy of a lifestyle-based eHealth intervention in preventing cardiovascular disease or cognitive decline in community dwellers aged 65+. Participants were probed on their reasons for participation in the trial and their views on general health, cardiovascular disease, ageing, and prevention. The subset of data focusing on cognitive disorders (15 interviewees; all in Finland) was considered for this study. Data were analysed using content analysis. RESULTS: Participants' knowledge of the cause and risk factors of cognitive disorders and prevention was limited and superficial, and a need for up-to-date, reliable, and practical information and advice was expressed. Cognitive disorders evoked fear and concern, and feelings of hopelessness and misery were frequently expressed, indicating a stigma. Strong heredity of cognitive disorders was a commonly held belief, and opinions on the possibility of prevention were doubtful, particularly in relation to primary prevention. Family history and/or indirect experiences of cognitive disorders was a recurrent theme and it showed to be linked to both the knowledge of and feelings associated with cognitive disorders, as well as attitude towards prevention. Indirect experiences were linked to increased awareness and knowledge, but also uncertainty about risk factors and possibility of prevention. Distinct fear and concerns, particularly over one's own cognition/risk, and high motivation towards engaging in prevention and participating in a prevention trial were also identified in connection to this theme. CONCLUSIONS: Family history and/or indirect experiences of cognitive disorders were linked to sensitivity and receptiveness to brain health and prevention potential. Our findings may be helpful in addressing older adults' expectations in future prevention trials to improve recruitment, maximise adherence, and facilitate the successful implementation of interventions.

Older Adults' Reasons for Participating in an eHealth Prevention Trial: A Cross-Country, Mixed-Methods Comparison.

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.

Professionals' attitudes regarding large-scale genetic information generated through next generation sequencing in research: a pilot study.

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.

Publics and biobanks: Pan-European diversity and the challenge of responsible innovation.

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.