Rapid progress in genomics has enabled a thriving market for direct-to-consumer' genetic testing, whereby people have access to their genetic information without the involvement of a healthcare provider. Companies like 23andMe and AncestryDNA, which provide affordable health, genealogy, and ancestry reports, have already tested tens of millions of customers. At the same time, alas, far-right groups have also taken an interest in genetic testing, using them to attack minorities and prove their genetic purity.' However, the relation between genetic testing and online hate has not really been studied by the scientific community. To address this gap, we present a measurement study shedding light on how genetic testing is discussed on Web communities in Reddit and 4chan. We collect 1.3M comments posted over 27 months using a set of 280 keywords related to genetic testing. We then use Latent Dirichlet Allocation, Google's Perspective API, Perceptual Hashing, and word embeddings to identify trends, themes, and topics of discussion. Our analysis shows that genetic testing is discussed frequently on Reddit and 4chan, and often includes highly toxic language expressed through hateful, racist, and misogynistic comments. In particular, on 4chan's politically incorrect board ( pol ), content from genetic testing conversations involves several alt-right personalities and openly antisemitic memes. Finally, we find that genetic testing appears in a few unexpected contexts, and that users seem to build groups ranging from technology enthusiasts to communities using it to promote fringe political views.
@cite_3 conduct a meta-analysis of 53 studies involving 47K people around perceptions of genetic privacy, highlighting how survey questions are often phrased poorly, thus leading to possible misinterpretations of the results. They also show that not enough attention was paid to influential factors, e.g., participants' sociocultural backgrounds. Overall, research in this area mostly relies on qualitative studies examining the societ al effects of genetic testing @cite_65 @cite_46 @cite_65 @cite_46 @cite_30 @cite_33 @cite_35 and lacks quantitative large-scale measurements. To the best of our knowledge ours is the first large-scale, quantitative measurement study, using Reddit and 4chan. We examine trends, themes, and topics of discussion around genetic testing, and explore how communities related to the alt-right exploit genetic testing for sinister purposes.
@cite_30 @cite_35 @cite_33 @cite_65 @cite_3 @cite_46
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Background Genetic testing for risk of hereditary cancer can help patients to make important decisions about prevention or early detection. US and UK studies show that people from ethnic minority groups are less likely to receive genetic testing. It is important to understand various groups’ awareness of genetic testing and its acceptability to avoid further disparities in health care. This review aims to identify and detail awareness, knowledge, perceptions, and attitudes towards genetic counselling testing for cancer risk prediction in ethnic minority groups. Background Aims: Direct-to-consumer (DTC) genetic tests have facilitated easy access to personal genetic information related to health and nutrition; however, con This study examines the way direct-to-consumer genetic testing (DTCGT) companies communicate privacy information and how consumers understand privacy implications of DTCGT. We first conducted an analysis of DTCGT websites to determine what information they provide regarding the treatment of consumer information and samples. 86 companies offered DTCGT services that could be purchased online from Canada. We then surveyed 415 consumers (180 had purchased, 235 considered but did not purchase DTCGT). While most websites had some privacy information, few provided sufficient information for consumers to make informed purchase decisions. Nearly half of participants reported reading the company’s privacy policy and many felt they received enough information about privacy implications, but their expectations were generally not consistent with company practices. The most common expectation was that the company would share results only with them and destroy their sample after testing. We discuss these issues regardin... Direct-to-consumer (DTC) genetic testing has attracted a great amount of attention from policy makers, the scientific community, professional groups, and the media. Although it is unclear what the public demand is for these services, there does appear to be public interest in personal genetic risk information. As a result, many commentators have raised a variety of social, ethical, and regulatory issues associated with this emerging industry, including privacy issues, ensuring that DTC companies provide accurate information about the risks and limitations of their services, the possible adverse impact of DTC genetic testing on healthcare systems, and concern about how individuals may interpret and react to genetic risk information. Concerns about genetic privacy affect individuals’ willingness to accept genetic testing in clinical care and to participate in genomics research. To learn what is already known about these views, we conducted a systematic review, which ultimately analyzed 53 studies involving the perspectives of 47,974 participants on real or hypothetical privacy issues related to human genetic data. Bibliographic databases included MEDLINE, Web of Knowledge, and Sociological Abstracts. Three investigators independently screened studies against predetermined criteria and assessed risk of bias. The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. When asked specifically “are you worried about genetic privacy,” the general public, patients, and professionals frequently said yes. In many cases, however, that question was posed poorly or only in the most general terms. While many participants expressed concern that genomic and medical information would be revealed to others, respondents frequently seemed to conflate privacy, confidentiality, control, and security. People varied widely in how much control they wanted over the use of data. They were more concerned about use by employers, insurers, and the government than they were about researchers and commercial entities. In addition, people are often willing to give up some privacy to obtain other goods. Importantly, little attention was paid to understanding the factors–sociocultural, relational, and media—that influence people’s opinions and decisions. Future investigations should explore in greater depth which concerns about genetic privacy are most salient to people and the social forces and contexts that influence those perceptions. It is also critical to identify the social practices that will make the collection and use of these data more trustworthy for participants as well as to identify the circumstances that lead people to set aside worries and decide to participate in research. To describe consumers' perceptions of genetic counseling services in the context of direct-to-consumer personal genomic testing is the purpose of this research. Utilizing data from the Scripps Genomic Health Initiative, we assessed direct-to-consumer genomic test consumers' utilization and perceptions of genetic counseling services. At long-term follow-up, approximately 14 months post-testing, participants were asked to respond to several items gauging their interactions, if any, with a Navigenics genetic counselor, and their perceptions of those interactions. Out of 1325 individuals who completed long-term follow-up, 187 (14.1 ) indicated that they had spoken with a genetic counselor. The most commonly given reason for not utilizing the counseling service was a lack of need due to the perception of already understanding one's results (55.6 ). The most common reasons for utilizing the service included wanting to take advantage of a free service (43.9 ) and wanting more information on risk calculations (42.2 ). Among those who utilized the service, a large fraction reported that counseling improved their understanding of their results (54.5 ) and genetics in general (43.9 ). A relatively small proportion of participants utilized genetic counseling after direct-to-consumer personal genomic testing. Among those individuals who did utilize the service, however, a large fraction perceived it to be informative, and thus presumably beneficial.