No abstract

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.

This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results on the platform openSNP. In particular, we focused on interviewees' understanding of privacy. Participants reported that the likelihood and the magnitude of privacy harms depend on gender, ethnicity, sexual orientation, the stigma associated with certain clinical conditions, the existence of adequate legislation, and the nature of national health care systems. Some participants expressed the view that those who enjoy higher socioeconomic status or are better protected by their country's legislation have a responsibility to share their genetic data. Our study shows that people who share their genetic data publicly online-far from being insensitive to privacy risks-have a complex understanding of the social, relational, and contextual nature of genetic privacy.

This article focuses on the social and cultural aspects of the unprecedented and unparalleled proliferation of food-related allergies and intolerances. It thus aims to contribute to filling the theoretical lacunae in the current sociological approach to this fairly recent phenomenon. The article’s framework is divided into four segments. First, the rise in food allergies is placed within the field of the social history and medicalization of allergies, and seeks to understand the phenomenon in the context of the industrialized modern world. The following section discusses how and why lay experts are increasingly dominating the food allergy-related discourse. Drawing on recent empirical data, it is further shown how food allergies rise along with a population’s affluence and education. Third, the idiosyncrasies of food allergies and intolerances are addressed with respect to food consumption and its changing social implications. It is argued that individualization places less pressure on individuals to conform to broader social norms of food refusal, which offers the sufferers with a newly acquired sense of control over a random, scientified, and confounding food availability and provides a medium to covertly convey their educational and socioeconomic background. Lastly, the health belief model is applied in order to suggest a further potential explanation for the current increase in self-reported food allergies and intolerances.