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Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.

ABSTRACT: The declining cost of DNA sequencing has been accompanied by a proliferation of companies selling 'direct-to-consumer genetic testing' (DTC-GT) services. Many of these are marketed online as tools for enabling citizens to make more informed decisions about their health, wellness and lifestyle. We assessed the 'information for consumers' provided by these companies at the prepurchase stage, which could influence initial decisions to part with money, data or tissue samples. A scoping exercise revealed 65 DTC-GT companies advertising their services online to consumers in the United Kingdom, of which 15 met our inclusion criteria. We benchmarked their consumer information against the good practice principles developed by the UK Human Genetics Commission (HGC). No provider complied with all the HGC principles and overall levels of compliance varied considerably. Although consent for testing was discussed by all but one company, information about data reuse for research or other purposes was often sparse and consent options limited or unclear. Most did not provide supplementary support services to help users better understand or cope with the implications of test results. We provide recommendations for updating the preconsumer transparency aspects of the HGC guidelines to ensure their fitness-for-purpose in this rapidly changing market. We also recommend improving coordination between relevant governance bodies to ensure minimum standards of transparency, quality and accountability. Although DTC-GT has many potential benefits, close partnership between consumers, industry and government, along with interdisciplinary science input, are essential to ensure that these innovations are used ethically and responsibly.

SUBMITTER: Hall JA

PROVIDER: S-EPMC5567147 | biostudies-literature | 2017 Aug

REPOSITORIES: biostudies-literature

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Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.

Hall Jacqueline A JA Gertz Rena R Amato Joan J Pagliari Claudia C

European journal of human genetics : EJHG 20170503 8

The declining cost of DNA sequencing has been accompanied by a proliferation of companies selling 'direct-to-consumer genetic testing' (DTC-GT) services. Many of these are marketed online as tools for enabling citizens to make more informed decisions about their health, wellness and lifestyle. We assessed the 'information for consumers' provided by these companies at the prepurchase stage, which could influence initial decisions to part with money, data or tissue samples. A scoping exercise reve ...[more]

PMID: 28703222

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Project description:BACKGROUND:Involving consumers in producing health services is mandated in many countries. Evidence indicates consumer partnerships lead to improved service design, quality and innovation. Involving participants from minority groups is crucial because poor understanding of distinctive needs affects individuals' service experiences and outcomes. Few studies consider service compliance with consumer partnering requirements or inclusion of minority group participants. METHODS:An online survey structured by domains of the Australian National Safety and Quality in Health Service Standards (NSQHS, 2013), was conducted. Questions covered consumer partnering in service planning, management and evaluation plus patient care design and inclusion of consumers from minority groups. Approximately 1200 Australian hospital and day surgery services were identified and 447 individual email addresses were identified for staff leading consumer partnerships. Quantitative data were analysed using SPSS. Qualitative responses, managed in NVivo, were analysed thematically. Frequencies were produced to indicate common activities and range of activities within question domains. RESULTS:Comprehensive responses were received from 115 services (25.7%), including metropolitan and non-metropolitan, private and public service settings. Most respondents (95.6%) "partnered with consumers to develop or provide feedback on patient information". Regarding inclusion of participants from minority groups, respondents were least likely to specifically include those from socially disadvantaged backgrounds (23.6%). Public health services were more likely than private services to engage with consumers. CONCLUSIONS:The survey is the first to include responses about consumer partnering from across Australia. While many respondents partner with consumers, it is clear that more easily-organised activity such as involvement in existing committees or commenting on patient information occurs more commonly than involvement in strategy or governance. This raises questions over whether strategic-level involvement is too difficult or unrealistic; or whether services simply lack tools. Minority views may be missed where there is a lack of specific action to include diversity. Future work might address why services choose the activities we found and probe emerging opportunities, such as using social media or online engagement.

Project description:BACKGROUND:There has been an exponential increase in the general population's usage of the internet and of information accessibility; the current demand for online consumer health information (OCHI) is unprecedented. There are multiple studies on internet access and usage, quality of information, and information needs. However, few studies explored negative outcomes of OCHI in detail or from different perspectives, and none examined how these negative outcomes could be reduced. OBJECTIVE:The aim of this study was to describe negative outcomes associated with OCHI use in primary care and identify potential preventive strategies from consumers', health practitioners', and health librarians' perspectives. METHODS:This included a two-stage interpretive qualitative study. In the first stage, we recruited through a social media survey, a purposeful sample of 19 OCHI users who had experienced negative outcomes associated with OCHI. We conducted semistructured interviews and performed a deductive-inductive thematic analysis. The results also informed the creation of vignettes that were used in the next stage. In the second stage, we interviewed a convenient sample of 10 key informants: 7 health practitioners (3 family physicians, 2 nurses, and 2 pharmacists) and 3 health librarians. With the support of the vignettes, we asked participants to elaborate on (1) their experience with patients who have used OCHI and experienced negative outcomes and (2) what strategies they suggest to reduce these outcomes. We performed a deductive-inductive thematic analysis. RESULTS:We found that negative outcomes of OCHI may occur at three levels: internal (such as increased worrying), interpersonal (such as a tension in the patient-clinician relationship), and service-related (such as postponing a clinical encounter). Participants also proposed three types of strategies to reduce the occurrence of these negative outcomes, namely, providing consumers with reliable OCHI, educating consumers on how to assess OCHI websites, and helping consumers present and discuss the OCHI they find with a health professional in their social network or a librarian for instance. CONCLUSIONS:We examined negative outcomes associated with using OCHI from five complementary perspectives (consumers, family physicians, pharmacists, nurses, and health librarians). We identified a construct of OCHI use-related tension that included and framed all negative outcomes. This construct has three dimensions (three interdependent levels): internal, interpersonal, and service-related tensions. Future research can focus on the implementation and effectiveness of the proposed strategies, which might contribute to reducing these tensions.

Project description:BackgroundThe internet is commonly used by older adults to obtain health information and this trend has markedly increased in the past decade. However, studies illustrate that much of the available online health information is not informed by good quality evidence, developed in a transparent way, or easy to use. Furthermore, studies highlight that the general public lacks the skills necessary to distinguish between online products that are credible and trustworthy and those that are not. A number of tools have been developed to assess the evidence, transparency, and usability of online health information; however, many have not been assessed for reliability or ease of use.ObjectiveThe first objective of this study was to determine if a tool assessing the evidence, transparency, and usability of online health information exists that is easy and quick to use and has good reliability. No such tool was identified, so the second objective was to develop such a tool and assess it for reliability when used to assess online health information on topics of relevant to optimal aging.MethodsAn electronic database search was conducted between 2002 and 2012 to identify published papers describing tools that assessed the evidence, transparency, and usability of online health information. Papers were retained if the tool described was assessed for reliability, assessed the quality of evidence used to create online health information, and was quick and easy to use. When no one tool met expectations, a new instrument was developed and tested for reliability. Reliability between two raters was assessed using the intraclass correlation coefficient (ICC) for each item at two time points. SPSS Statistics 22 software was used for statistical analyses and a one-way random effects model was used to report the results. The overall ICC was assessed for the instrument as a whole in July 2015. The threshold for retaining items was ICC>0.60 (ie, "good" reliability).ResultsAll tools identified that evaluated online health information were either too complex, took a long time to complete, had poor reliability, or had not undergone reliability assessment. A new instrument was developed and assessed for reliability in April 2014. Three items had an ICC<0.60 (ie, "good" reliability). One of these items was removed ("minimal scrolling") and two were retained but reworded for clarity. Four new items were added that assessed the level of research evidence that informed the online health information and the tool was retested in July 2015. The total ICC score showed excellent agreement with both single measures (ICC=0.988; CI 0.982-0.992) and average measures (ICC=0.994; CI 0.991-0.996).ConclusionsThe results of this study suggest that this new tool is reliable for assessing the evidence, transparency, and usability of online health information that is relevant to optimal aging.

Project description:UK public health policy requires hospitals to have in place health promotion services which enable patients to improve their health through adopting healthy behaviours, i.e. health education. This study investigated hospitalised patients' experiences of health education for smoking, alcohol use, diet, physical activity, and weight, and their views concerning the appropriateness of hospitals as a setting for the delivery of health education services.Recently discharged adult hospital patients (n = 322) were sent a questionnaire asking about their smoking, alcohol use, diet, physical activity, and weight. For each of these risk factors, participants were asked whether they agreed with screening for the risk factor, whether they received health education, whether it was "helpful", and if they wanted to change their behaviour. Participants were also asked a set of general questions concerning health education within hospitals.190 patients responded (59%). Over 80% agreed with screening for all risk factors. 80% of smokers, 52% consuming alcohol above recommended limits, 86% of obese, 66% consuming less than five fruit and vegetables a day, and 61% of physically inactive participants wanted to change their respective behaviour. However only a third reported receiving health education. While over 60% of patients wanted health education around discharge, the majority of those receiving health education did so at admission. The majority agreed that "hospital is a good place for patients to receive" health education (87%) and that "the hospital should provide patients with details of community organisations that provide" health education (83%). Only a minority (31%) reported a preference for health education from their GP instead of hospital.While the delivery of health education to patients within hospital was poor, hospitals are viewed by patients as an appropriate, and in some cases preferred setting for the screening of risk factors and delivery of health education.

Project description:BackgroundApproximately one-third of Japanese couples currently worry or previously worried about infertility. To develop strategies for the primary prevention of infertility as a population approach, it is important for the general population to be knowledgeable about fertility and infertility. The internet may contribute to the dissemination of information regarding infertility and fertility. However, few studies have examined online information about fertility.ObjectiveThis study aimed to quantitatively examine online Japanese-language information about lifestyle factors associated with reduced fertility.MethodsWe conducted online searches, using the 10 search terms with the highest numbers of searches that people hoping to conceive are likely to input in two major search engines in Japan (Google Japan and Yahoo! Japan). From the 2200 retrieved websites, 1181 duplicates and 500 websites unrelated to our objective were excluded, resulting in a final dataset of 519 websites. Coding guidelines were developed for the following lifestyle factors associated with reduced fertility: sexually transmitted diseases, psychological stress, cigarette smoking, alcohol use, nutrition and diet, physical activity and exercise, underweight, overweight and obesity, and environmental pollutants.ResultsIn terms of the website author's professional expertise, 69.6 % of the coding instances for the selected lifestyle factors were mentioned by hospitals, clinics, or the media, whereas only 1.7% were mentioned by laypersons. Psychological stress (20.1%) and sexually transmitted diseases (18.8%) were the most frequently mentioned lifestyle factors associated with reduced fertility. In contrast, cigarette smoking, alcohol use, nutrition and diet, physical activity and exercise, underweight, overweight and obesity, and environmental pollutants were mentioned relatively infrequently. The association between reduced fertility and sexually transmitted diseases was mentioned significantly more frequently by hospitals and clinics than by the media (P<.001). The association between reduced fertility and nutrition and diet was mentioned significantly more frequently by the media than by hospitals and clinics (P=.008). With regard to the sex of the target audience for the information, female-specific references to psychological stress, sexually transmitted diseases, nutrition and diet, underweight, physical activity and exercise, and overweight and obesity were significantly more frequent than were male-specific references to these lifestyle factors (psychological stress: P=.002, sexually transmitted diseases: P<.001, nutrition and diet: P<.001, underweight: P<.001, physical activity and exercise: P<.001, overweight and obesity: P<.001).ConclusionsOf the lifestyle factors known to be related to reduced fertility, cigarette smoking, alcohol use, and male-specific lifestyle factors are mentioned relatively infrequently in online information sources in Japan, and these factors should be discussed more in information published on websites.

Dataset Information

Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.

Publications

Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.

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