Darja Irdam

Open sharing of genomic data: Who does it and why?

We explored the characteristics and motivations of people who, having obtained their genetic or genomic data from Direct-To-Consumer genetic testing (DTC-GT) companies, voluntarily decide to share them on the publicly accessible web platform openSNP. The study is the first attempt to describe open data sharing activities undertaken by individuals without institutional oversight. In the paper we provide a detailed overview of the distribution of the demographic characteristics and motivations of people engaged in genetic or genomic open data sharing. The geographical distribution of the respondents showed the USA as dominant. There was no significant gender divide, the age distribution was broad, educational background varied and respondents with and without children were equally represented. Health, even though prominent, was not the respondents’ primary or only motivation to be tested. As to their motivations to openly share their data, 86.05% indicated wanting to learn about themselves as relevant, followed by contributing to the advancement of medical research (80.30%), improving the predictability of genetic testing (76.02%) and considering it fun to explore genotype and phenotype data (75.51%). Whereas most respondents were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible. Our findings highlight the diversity of DTC-GT consumers who decide to openly share their data. Instead of focusing exclusively on health-related aspects of genetic testing and data sharing, our study emphasizes the importance of taking into account benefits and risks that stretch beyond the health spectrum. Our results thus lend further support to the call for a broader and multi-faceted conceptualization of genomic utility.

Mortality in Transition: Study Protocol of the PrivMort Project, a multilevel convenience cohort study

BackgroundPrevious research using routine data identified rapid mass privatisation as an important driver of mortality crisis following the collapse of Communism in Central and Eastern Europe. However, existing studies on the mortality crisis relying on individual level or routine data cannot assess both distal (societal) and proximal (individual) causes of mortality simultaneously. The aim of the PrivMort Project is to overcome these limitations and to investigate the role of societal factors (particularly rapid mass privatisation) and individual-level factors (e.g. alcohol consumption) in the mortality changes in post-communist countries.MethodsThe PrivMort conducts large-sample surveys in Russia, Belarus and Hungary. The approach is unique in comparing towns that have undergone rapid privatisation of their key industrial enterprises with those that experienced more gradual forms of privatisation, employing a multi-level retrospective cohort design that combines data on the industrial characteristics of the towns, socio-economic descriptions of the communities, settlement-level data, individual socio-economic characteristics, and individuals’ health behaviour. It then incorporates data on mortality of different types of relatives of survey respondents, employing a retrospective demographic approach, which enables linkage of historical patterns of mortality to exposures, based on experiences of family members. By May 2016, 63,073 respondents provided information on themselves and 205,607 relatives, of whom 102,971 had died. The settlement-level dataset contains information on 539 settlements and 12,082 enterprises in these settlements in Russia, 96 settlements and 271 enterprises in Belarus, and 52 settlement and 148 enterprises in Hungary.DiscussionIn addition to reinforcing existing evidence linking smoking, hazardous drinking and unemployment to mortality, the PrivMort dataset will investigate the variation in transition experiences for individual respondents and their families across settlements characterized by differing contextual factors, including industrial characteristics, simultaneously providing information about how excess mortality is distributed across settlements with various privatization strategies.

The effect of rapid privatisation on mortality in mono-industrial towns in post-Soviet Russia: a retrospective cohort study

Summary Background Population-level data suggest that economic disruptions in the early 1990s increased working-age male mortality in post-Soviet countries. This study uses individual-level data, using an indirect estimation method, to test the hypothesis that fast privatisation increased mortality in Russia. Methods In this retrospective cohort study, we surveyed surviving relatives of individuals who lived through the post-communist transition to retrieve demographic and socioeconomic characteristics of their parents, siblings, and male partners. The survey was done within the framework of the European Research Council (ERC) project PrivMort (The Impact of Privatization on the Mortality Crisis in Eastern Europe). We surveyed relatives in 20 mono-industrial towns in the European part of Russia (ie, the landmass to the west of the Urals). We compared ten fast-privatised and ten slow-privatised towns selected using propensity score matching. In the selected towns, population surveys were done in which respondents provided information about vital status, sociodemographic and socioeconomic characteristics and health-related behaviours of their parents, two eldest siblings (if eligible), and first husbands or long-term partners. We calculated indirect age-standardised mortality rates in fast and slow privatised towns and then, in multivariate analyses, calculated Poisson proportional incidence rate ratios to estimate the effect of rapid privatisation on all-cause mortality risk. Findings Between November, 2014, and March, 2015, 21 494 households were identified in 20 towns. Overall, 13 932 valid interviews were done (with information collected for 38 339 relatives [21 634 men and 16 705 women]). Fast privatisation was strongly associated with higher working-age male mortality rates both between 1992 and 1998 (age-standardised mortality ratio in men aged 20–69 years in fast vs slow privatised towns: 1·13, SMR 0·83, 95% CI 0·77–0·88 vs 0·73, 0·69–0·77, respectively) and from 1999 to 2006 (1·15, 0·91, 0·86–0·97 vs 0·79, 0·75–0·84). After adjusting for age, marital status, material deprivation history, smoking, drinking and socioeconomic status, working-age men in fast-privatised towns experienced 13% higher mortality than in slow-privatised towns (95% CI 1–26). Interpretation The rapid pace of privatisation was a significant factor in the marked increase in working-age male mortality in post-Soviet Russia. By providing compelling evidence in support of the health benefits of a slower pace of privatisation, this study can assist policy makers in making informed decisions about the speed and scope of government interventions. Funding The European Research Council.

Intergenerational Mobility in Relative Educational Attainment and Health-Related Behaviours

Research on intergenerational social mobility and health-related behaviours yields mixed findings. Depending on the direction of mobility and the type of mechanisms involved, we can expect positive or negative association between intergenerational mobility and health-related behaviours. Using data from a retrospective cohort study, conducted in more than 100 towns across Belarus, Hungary and Russia, we fit multilevel mixed-effects Poisson regressions with two measures of health-related behaviours: binge drinking and smoking. The main explanatory variable, intergenerational educational mobility is operationalised in terms of relative intergenerational educational trajectories based on the prevalence of specified qualifications in parental and offspring generations. In each country the associations between intergenerational educational mobility, binge drinking and smoking was examined with incidence rate ratios and predicted probabilities, using multiply imputed dataset for missing data and controlling for important confounders of health-related behaviours. We find that intergenerational mobility in relative educational attainment has varying association with binge drinking and smoking and the strength and direction of these effects depend on the country of analysis, the mode of mobility, the gender of respondents and the type of health-related behaviour. Along with accumulation and Falling from Grace hypotheses of the consequences of intergenerational mobility, our findings suggest that upward educational mobility in certain instances might be linked to improved health-related behaviours.

Smoking and mortality in Eastern Europe: results from the PrivMort retrospective cohort study of 177,376 individuals

Background The estimated prevalence of smoking and proportion of deaths due to tobacco in Eastern European countries are among the highest in the world. Existing estimates of mortality attributable to smoking in the region are mostly indirect. The aim of this analysis was to calculate the proportion of tobacco-attributed deaths in three Eastern European countries using individual level cohort data. Methods The PrivMort project established a cohort of relatives of participants in population sample surveys in Russia, Belarus and Hungary. Survey participants provided data on smoking habits and vital statistics of their close relatives between 1982 and 2013. Population attributable risk fractions (PARF) in men (n = 99528) and women (n = 77848) aged 40-79 years were calculated from the prevalence rates of smoking and hazard ratios of mortality for smokers versus non-smokers. Trends in PARF over four 8-year time periods (1982-1989, 1990-1997, 1998-2005, and 2006-2013) were examined. Results In men in the most recent period (2006-2013), the proportions of deaths attributable to tobacco were 23% in Russia, 22% in Belarus, and 22% in Hungary. The respective estimates in women were lower (2%, 2%, and 13%), possibly due to underestimation of smoking prevalence. PARF estimates have declined slightly since the early 1990s in men but increased in women. Conclusions Consistently with existing indirect estimates, our results based on individual level cohort data suggest that over one fifth of all deaths in men aged 40-79 years are attributable to tobacco. While these proportions are lower in women, the increasing trend is a major concern. Implications This is the first large scale, individual-level cohort study that estimated the mortality attributable to tobacco smoking directly in Eastern European population samples. The results confirm previous indirect estimates and show that more than 20% of all deaths in Eastern European men can be attributed to tobacco. The study also confirms the increasing trend in smoking-related deaths among women. These findings emphasize the importance of targeted policy interventions in Eastern European countries.

Parental transmission of smoking among middle-aged and older populations in Russia and Belarus

ObjectivesThe very high rates of smoking among men and the rapid changes among women in the Post-Soviet countries mean that this region offers an opportunity to understand better the intergenerational role of parental influences on smoking.MethodsIn this study, we exploit a unique data set, the PrivMort cohort study conducted in 30 Russian and 20 Belarusian towns in 2014–2015, which collects information on behaviours of middle-aged and older individuals and their parents, including smoking. We explored the associations between smoking by parents and their offspring using multiply imputed data sets and multilevel mixed-effect Poisson regressions.ResultsAdjusting for a wide array of social origin, socio-demographic, and socio-economic variables, our analysis suggests that sons of regularly smoking fathers have prevalence ratios of 1.35 [95% confidence intervals (CI) 1.21–1.50] and 1.39 (CI 1.23–1.58) of smoking, while the figures for daughters of regularly smoking mothers are 1.91 (CI 1.40–2.61) and 2.30 (CI 1.61–3.28), respectively, in Russia and Belarus.ConclusionsIntergenerational paternal and maternal influences on smoking should be taken into account in studies seeking to monitor the rates of smoking and the impact of tobacco control programmes.

The wounds of post-socialism: a systematic review of the social determinants of mortality in Hungary

Abstract Eastern Europe underwent one of the most dramatic economic and demographic changes in recent history with skyrocketing mortality rates in some countries during the 1990s. The case of Hungary among the post-socialist transition countries is puzzling for several reasons. Although the Hungarian transition has often been characterized as smooth and successful, a look at the human dimension of the transformation reveals large costs and a slow improvement. Based on the analysis of 29 articles we provide a systematic review of the empirical evidence about the social determinants of mortality in post-socialist Hungary establishing a hierarchy of causes. Socio-economic position, mental health, social capital, alcohol consumption, stress and social integration are the most important explanatory variables that received attention by the researchers. Although economic policies might have played a central role in the rise of mortality there is no empirical research on the political economy of health in Hungary. No critical analysis of post-socialism can be complete without assessing the human costs of economic transformation. Social scientists have much to learn from social epidemiologists who have designed robust methodologies and complex theoretical frameworks to analyse the political economic determinants of health.

Smoking, alcohol and cancer mortality in Eastern European men: findings from the PrivMort retrospective cohort study

Eastern European men have among the highest cancer mortality rates globally. Prevalence of smoking and alcohol intake in this region is also high. The aim of our study was to calculate population attributable risk fraction (PARF) of cancer deaths from smoking and alcohol in Russia, Belarus and Hungary, and to examine the contribution of these lifestyle factors to differences in male cancer mortality in the three countries. Data were collected as part of the PrivMort retrospective cohort study. Randomly selected participants living in mid‐size towns in Russia, Belarus and Hungary provided information on smoking habits, alcohol consumption, vital status and cause of death (if applicable) of male relatives (fathers, siblings and partners). PARF of cancer deaths (age 35–79) due to smoking, alcohol consumption and both combined was estimated between 2001 and 2013. Among 72,190 men, 4,702 died of cancer. Age standardized cancer mortality rates were similar to official data in all three countries. The estimated PARF (95% CI) associated with measures of smoking, alcohol consumption, both combined, and overall smoking or drinking were 25% (19–30), 2% (0–4), 29% (19–39), 43% (32–53) in Russia, 18% (8–28), 2% (−1 to 6), 28% (20–35), 38% (25–50) in Belarus and 17% (13–20), 1% (0–3), 25% (20–30), 35% (28–42) in Hungary, respectively. These results suggest that in Eastern Europe, at least one third of cancer deaths in males may have been attributable to smoking and/or alcohol consumption in recent years. Health policies targeting these lifestyle factors can have a major impact on population health.