Abstract:The purpose of this study was to identify attitudes and perceptions of willingness to participate in genetic testing for type 2 diabetes (T2D) risk prediction in the general population. Adults (n = 598) were surveyed on attitudes about utilizing genetic testing to predict future risk of T2D. Participants were recruited from public libraries (53%), online registry (37%) and a safety net hospital emergency department (10%). Respondents were 37±11 years old, primarily White (54%), female (69%), college educated (… Show more
“…Rather, most common diseases are influenced by complex interactions among multiple genetic and environmental factors, with each single one of them only leading to minor alterations in risk (Critchley et al, 2015; Janssens et al, 2008). All in all, the complex interactions between genetic and environmental causes in the cases of most common diseases are still poorly understood, and the clinical validity and utility of DTC genetic tests are unclear (American College of Medical Genetics and Genomics, 2016; Janssens et al, 2015; Kolor et al, 2009; Wessel et al, 2016). In the context of DTC promotion, however, genetic determinism may be employed to construct preferred meanings about genetic tests to reflect the marketing agenda of DTC companies.…”
Section: Discussionmentioning
confidence: 99%
“…The results that current DTC genetic tests are able to provide are thus probabilistic rather than definitive in nature (Bloss et al, 2010). These results can only lead to modest or minimal changes in disease risk management (Goldsmith et al, 2012; Janssens et al, 2008), therefore the clinical validity and utility of these tests are rather limited (Agurs-Collins et al, 2015; Wessel et al, 2016). Unsurprisingly, in marketing their tests, however, the DTC companies foreground the benefits of the tests, rather than their limitations.…”
In this article we examine commodification and marketisation of genetic testing by companies offering direct-to-consumer (DTC) genetic testing to the general public through online platforms in Hong Kong. Recently, offers of genetic testing have expanded from scientific and clinical genetic settings to general medicine (e.g. in hereditary cancer) and non-medical domains (e.g. aptitude tests). The wider availability of tests, however, has raised concerns about the currently available scientifically proven utility of these tests. Using theme-oriented discourse analysis, we analyse the specific discursive modalities through which the DTC companies in Hong Kong make inflated claims about the value of genetic tests to pursue their marketing agenda. We show that in this way the companies are selling ‘more’ than specific products to consumers: they are selling ‘hope’ and ‘increased autonomy’, that is, an opportunity to buy commodities online that promise consumers control of their health and wellbeing.
“…Rather, most common diseases are influenced by complex interactions among multiple genetic and environmental factors, with each single one of them only leading to minor alterations in risk (Critchley et al, 2015; Janssens et al, 2008). All in all, the complex interactions between genetic and environmental causes in the cases of most common diseases are still poorly understood, and the clinical validity and utility of DTC genetic tests are unclear (American College of Medical Genetics and Genomics, 2016; Janssens et al, 2015; Kolor et al, 2009; Wessel et al, 2016). In the context of DTC promotion, however, genetic determinism may be employed to construct preferred meanings about genetic tests to reflect the marketing agenda of DTC companies.…”
Section: Discussionmentioning
confidence: 99%
“…The results that current DTC genetic tests are able to provide are thus probabilistic rather than definitive in nature (Bloss et al, 2010). These results can only lead to modest or minimal changes in disease risk management (Goldsmith et al, 2012; Janssens et al, 2008), therefore the clinical validity and utility of these tests are rather limited (Agurs-Collins et al, 2015; Wessel et al, 2016). Unsurprisingly, in marketing their tests, however, the DTC companies foreground the benefits of the tests, rather than their limitations.…”
In this article we examine commodification and marketisation of genetic testing by companies offering direct-to-consumer (DTC) genetic testing to the general public through online platforms in Hong Kong. Recently, offers of genetic testing have expanded from scientific and clinical genetic settings to general medicine (e.g. in hereditary cancer) and non-medical domains (e.g. aptitude tests). The wider availability of tests, however, has raised concerns about the currently available scientifically proven utility of these tests. Using theme-oriented discourse analysis, we analyse the specific discursive modalities through which the DTC companies in Hong Kong make inflated claims about the value of genetic tests to pursue their marketing agenda. We show that in this way the companies are selling ‘more’ than specific products to consumers: they are selling ‘hope’ and ‘increased autonomy’, that is, an opportunity to buy commodities online that promise consumers control of their health and wellbeing.
“…According to the latest polls people are interested in genetic testing for T2D risk since this allows them to evaluate the individual feature of pathology state[116]. However, several studies have shown that some factors contribute to the failure of individuals to conduct a genetic test.…”
Section: New Approaches For Clinician Interpretations Of Ngs Datamentioning
confidence: 99%
“…The main factors that influence refusal include distrust of medical researchers, religious prejudices and lower levels of education[117,118]. Some have argued that the clinical significance of genetic markers of T2D have only a minor role in predicting the risk with careful clinical risk assessment, the predictive value increases[116,119].…”
Section: New Approaches For Clinician Interpretations Of Ngs Datamentioning
Type 2 diabetes (T2D) mellitus is a common complex disease that currently affects more than 400 million people worldwide and has become a global health problem. High-throughput sequencing technologies such as whole-genome and whole-exome sequencing approaches have provided numerous new insights into the molecular bases of T2D. Recent advances in the application of sequencing technologies to T2D research include, but are not limited to: (1) Fine mapping of causal rare and common genetic variants; (2) Identification of confident gene-level associations; (3) Identification of novel candidate genes by specific scoring approaches; (4) Interrogation of disease-relevant genes and pathways by transcriptional profiling and epigenome mapping techniques; and (5) Investigation of microbial community alterations in patients with T2D. In this work we review these advances in application of next-generation sequencing methods for elucidation of T2D pathogenesis, as well as progress and challenges in implementation of this new knowledge about T2D genetics in diagnosis, prevention, and treatment of the disease.
“…The APT Webstudy was launched as clinical trials have increasingly utilized web-based tools, including registries, to improve efficiency in screening ( 7 – 9 ). Although leveraging registries to recruit for clinical trials is not a new concept, the establishment of online registries has broadened access to participants who are interested and eligible for studies ( 10 – 13 ). Going further than remote recruitment, Orri et al ( 14 ) conducted the first entirely web-based clinical trial run under an Investigational New Drug (IND) application.…”
BACKGROUND: The Alzheimer Prevention Trials (APT) Webstudy is the first stage in establishing a Trial-ready Cohort for Preclinical and Prodromal Alzheimer’s disease (TRC-PAD). This paper describes recruitment approaches for the APT Webstudy. Objectives: To remotely enroll a cohort of individuals into a web-based longitudinal observational study. Participants are followed quarterly with brief cognitive and functional assessments, and referred to Sites for in-clinic testing and biomarker confirmation prior to enrolling in the Trial-ready Cohort (TRC). Design: Participants are referred to the APT Webstudy from existing registries of individuals interested in brain health and Alzheimer’s disease research, as well as through central and site recruitment efforts. The study team utilizes Urchin Tracking Modules (UTM) codes to better understand the impact of electronic recruitment methods. Setting: A remotely enrolled online study. Participants: Volunteers who are at least 50 years old and interested in Alzheimer’s research. Measurements: Demographics and recruitment source of participant where measured by UTM. Results: 30,650 participants consented to the APT Webstudy as of April 2020, with 69.7% resulting from referrals from online registries. Emails sent by the registry to participants were the most effective means of recruitment. Participants are distributed across the US, and the demographics of the APT Webstudy reflect the referral registries, with 73.1% female, 85.0% highly educated, and 92.5% Caucasian. Conclusions: We have demonstrated the feasibility of enrolling a remote web-based study utilizing existing registries as a primary referral source. The next priority of the study team is to engage in recruitment initiatives that will improve the diversity of the cohort, towards the goal of clinical trials that better represent the US population.
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