Dataset Information

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions.

ABSTRACT: BACKGROUND:Millions of people have undergone direct-to-consumer genetic testing (DTC-GT), but little is known about individuals' motivations and experiences (e.g., discussion topics and emotions after obtaining the test results) in engaging with DTC-GT services. Previous studies either involved only a small number of DTC-GT consumers or were based on hypothetical scenarios. OBJECTIVE:Our study aimed to fill this gap by investigating online discussions about DTC-GT that developed naturally among tens of thousands of social media users. METHODS:We focused on the posts that were published in the r/23andme and r/AncestryDNA subreddits, which correspond to the two companies with the largest number of consumers in the DTC-GT market. We applied computational methods to infer and examine the topics discussed, temporal trends in posting rates and themes (e.g., aggregation of related topics), and emotions expressed in these online forums. RESULTS:We collected 157,000 posts published by 16,500 Reddit users between 2013 and 2019. We found that the posting rates increased sharply after popular promotional events (e.g., each Amazon Prime Day and Black Friday) and most posts were inquiries into, or status updates about, testing progress. The inferred themes of Ancestral Origin and Kinship/Feelings were the two most frequently discussed, while discussions about the Health Risks theme focused primarily on submitting DTC-GT raw data to third parties for interpretation. The Kinship/Feelings theme exhibited the largest range of emotional response. A qualitative review of the posts with extreme emotions showed that some people became excited because they found their biological parents or other kin, while others became upset because they unexpectedly found that their parents or other kin were not biologically related to them. CONCLUSION:This research demonstrates that online social media platforms can serve as a rich resource for characterizing actual DTC-GT experiences. The findings suggest that DTC-GT consumers' purchasing behaviors are associated with societal events and that future investigations should consider how DTC-GT challenges our understanding of kinship structure and function, genomic privacy, and the interpretation of health risks.

SUBMITTER: Yin Z

PROVIDER: S-EPMC7478842 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions.

Yin Zhijun Z Song Lijun L Clayton Ellen W EW Malin Bradley A BA

PloS one 20200908 9

<h4>Background</h4>Millions of people have undergone direct-to-consumer genetic testing (DTC-GT), but little is known about individuals' motivations and experiences (e.g., discussion topics and emotions after obtaining the test results) in engaging with DTC-GT services. Previous studies either involved only a small number of DTC-GT consumers or were based on hypothetical scenarios.<h4>Objective</h4>Our study aimed to fill this gap by investigating online discussions about DTC-GT that developed n ...[more]

PMID: 32898148

Similar Datasets

Project description:BackgroundEvidence-based decision making relies on easy access to trustworthy research results. The Cochrane Library is a key source of evidence about the effect of interventions and aims to "promote the accessibility of systematic reviews to anyone wanting to make a decision about health care". We explored how health professionals found, used and experienced The Library, looking at facets of user experience including findability, usability, usefulness, credibility, desirability and value.MethodsWe carried out 32 one-hour usability tests on participants from Norway and the UK. Participants both browsed freely and attempted to perform individually tailored tasks while "thinking aloud". Sessions were recorded and viewed in real time by researchers. Transcriptions and videos were reviewed by one researcher and one designer. Findings reported here reflect issues receiving a high degree of saturation and that we judge to be critical to the user experience of evidence-based web sites, based on principles for usability heuristics, web guidelines and evidence-based practice.ResultsParticipants had much difficulty locating both the site and its contents. Non-native English speakers were at an extra disadvantage when retrieving relevant documents despite high levels of English-language skills. Many participants displayed feelings of ineptitude, alienation and frustration. Some made serious mistakes in correctly distinguishing between different information types, for instance reviews, review protocols, and individual studies. Although most expressed a high regard for the site's credibility, some later displayed a mistrust of the independence of the information. Others were overconfident, thinking everything on The Cochrane Library site shared the same level of quality approval.ConclusionParadoxically, The Cochrane Library, established to support easy access to research evidence, has its own problems of accessibility. Health professionals' experiences of this and other evidence-based online resources can be improved by applying existing principles for web usability, prioritizing the development of simple search functionality, emitting "researcher" jargon, consistent marking of site ownership, and clear signposting of different document types and different content quality.

Project description:BACKGROUND:Rapid advances in scientific research have led to an increase in public awareness of genetic testing and pharmacogenetics. Direct-to-consumer (DTC) genetic testing companies, such as 23andMe, allow consumers to access their genetic information directly through an online service without the involvement of healthcare professionals. Here, we evaluate the clinical relevance of pharmacogenetic tests reported by 23andMe in their UK tests. METHODS:The research papers listed under each 23andMe report were evaluated, extracting information on effect size, sample size and ethnicity. A wider literature search was performed to provide a fuller assessment of the pharmacogenetic test and variants were matched to FDA recommendations. Additional evidence from CPIC guidelines, PharmGKB, and Dutch Pharmacogenetics Working Group was reviewed to determine current clinical practice. The value of the tests across ethnic groups was determined, including information on linkage disequilibrium between the tested SNP and causal pharmacogenetic variant, where relevant. RESULTS:23andMe offers 12 pharmacogenetic tests to their UK customers, some of which are in standard clinical practice, and others which are less widely applied. The clinical validity and clinical utility varies extensively between tests. The variants tested are likely to have different degrees of sensitivity due to different risk allele frequencies and linkage disequilibrium patterns across populations. The clinical relevance depends on the ethnicity of the individual and variability of pharmacogenetic markers. Further research is required to determine causal variants and provide more complete assessment of drug response and side effects. CONCLUSION:23andMe reports provide some useful pharmacogenetics information, mirroring clinical tests that are in standard use. Other tests are unspecific, providing limited guidance and may not be useful for patients without professional interpretation. Nevertheless, DTC companies like 23andMe act as a powerful intermediate step to integrate pharmacogenetic testing into clinical practice.

Dataset Information

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions.

Publications

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets