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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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. The disclosure of individual genetic results has generated an ongoing debate about which rules should be followed. We aimed to identify factors related to research participants' preferences about learning the results of genomic studies using their donated tissue samples. We conducted a cross-sectional survey of 279 patients from the United States and Spain who had volunteered to donate a sample for genomic research. Our results show that 48 of research participants would like to be informed about all individual results from future genomic studies using their donated tissue, especially those from the U.S. (71.4 ) and those believing that genetic information poses special risks (69.7 ). In addition, 16 of research participants considered genetic information to be riskier than other types of personal medical data. In conclusion, our study demonstrates that a high proportion of participants prefer to be informed about their individual results and that there is a higher preference among those research subjec... Purpose: The impact of laws restricting health insurers' use of genetic information has been assessed from two main vantage points: (1) whether they reduce the extent of genetic discrimination and (2) whether they reduce the fear of discrimination and the resulting deterrence to undergo genetic testing. A previous report from this study concluded that there are almost no well-documented cases of health insurers either asking for or using presymptomatic genetic test results in their underwriting decisions, either before or after these laws, or in states with or without these laws. This report evaluates the perceptions and the resulting behavior by patients and clinicians. Methods: A comparative case study analysis was performed in seven states with different laws respecting health insurers' use of genetic information (no law, new prohibition, mature prohibition). Semistructured interviews were conducted in person with five patient advocates and with 30 experienced genetic counselors or medical geneticists, most of whom deal with adult-onset disorders. Also, multiple informed consent forms and patient information brochures were collected and analyzed using qualitative methods. Results: Patients' and clinicians' fear of genetic discrimination greatly exceeds reality, at least for health insurance. It is uncertain how much this fear actually deters genetic testing. The greatest deterrence is to those who do not want to submit the costs of testing for reimbursement and who cannot afford to pay for testing. There appears to be little deterrence for tests that are more easily affordable or when the need for the information is much greater. Fear of discrimination plays virtually no role in testing decisions in pediatric or prenatal situations, but is significant for adult-onset genetic conditions. Conclusion: Existing laws have not greatly reduced the fear of discrimination. This may be due, in part, to clinicians' lack of confidence that these laws can prevent discrimination until there are test cases of actual enforcement. Ironically, there may be so little actual discrimination that it may not be possible to initiate good test cases.