Dataset Information

Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.

ABSTRACT: In an effort to meet ethical obligations and/or participant expectations, researchers may consider offering "raw" or uninterpreted genetic data for result return. It is therefore important to understand the motivations, behaviors, and perspectives of individuals who might choose to access raw data before such return becomes routine. In the direct-to-consumer (DTC) context, where raw data are often made available to customers, the use of third-party interpretation tools has raised concerns about genotype accuracy, data privacy, reliability of interpretation, and consumption of limited health care resources. However, relatively little is known about why individuals access raw data or what they do with the information received from third-party interpretation. Accordingly, we conducted a survey on raw data access and third-party tool usage among 1,137 DTC customers recruited through social media. Most survey respondents (89%) reported downloading their raw data. Among downloaders, 94% used at least one tool, most commonly Promethease (63%) or GEDmatch (84%). More than half (56%) used both health-related and non-health-related tools and differed significantly from those who used only one tool type in terms of demographics, participation in research, DTC tests ordered, and testing motivations. Exploratory interviews were conducted with 10 respondents and illustrated how social networking, initial lack of interesting findings, and general curiosity contributed to use of multiple tool types. These results suggest that even when initially motivated by ancestry and genealogy, consumers frequently also pursue health information in a largely unregulated and expanding suite of third-party tools, raising both challenges and opportunities for the professional genetics community.

SUBMITTER: Nelson SC

PROVIDER: S-EPMC6612532 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.

Nelson Sarah C SC Bowen Deborah J DJ Fullerton Stephanie M SM

American journal of human genetics 20190613 1

In an effort to meet ethical obligations and/or participant expectations, researchers may consider offering "raw" or uninterpreted genetic data for result return. It is therefore important to understand the motivations, behaviors, and perspectives of individuals who might choose to access raw data before such return becomes routine. In the direct-to-consumer (DTC) context, where raw data are often made available to customers, the use of third-party interpretation tools has raised concerns about ...[more]

PMID: 31204012

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Project description:The Office of the National Coordinator for Health Information Technology estimates that 96% of all U.S. hospitals use a basic electronic health record, but only 62% are able to exchange health information with outside providers. Barriers to information exchange across EHR systems challenge data aggregation and analysis that hospitals need to evaluate healthcare quality and safety. A growing number of hospital systems are partnering with third-party companies to provide these services. In exchange, companies reserve the rights to sell the aggregated data and analyses produced therefrom, often without the knowledge of patients from whom the data were sourced. Such partnerships fall in a regulatory grey area and raise new ethical questions about whether health, consumer, or health and consumer privacy protections apply. The current opinion probes this question in the context of consumer privacy reform in California. It analyzes protections for health information recently expanded under the California Consumer Privacy Act ("CA Privacy Act") in 2020 and compares them to protections outlined in the Health Information Portability and Accountability Act ("Federal Privacy Rule"). Four perspectives are considered in this ethical analysis: 1) standards of data deidentification; 2) rights of patients and consumers in relation to their health information; 3) entities covered by the CA Privacy Act; 4) scope and complementarity of federal and state regulations. The opinion concludes that the CCPA is limited in its application when health information is processed by a third-party data aggregation company that is contractually designated as a business associate; when health information is deidentified; and when hospital data are sourced from publicly owned and operated hospitals. Lastly, the opinion offers practical recommendations for facilitating parity between state and federal health data privacy laws and for how a more equitable distribution of informational risks and benefits from the sale of aggregated hospital data could be fostered and presents ways both for-profit and nonprofit hospitals can sustain patient trust when negotiating partnerships with third-party data aggregation companies.

Project description:BackgroundAs the number of mental health apps has grown, increasing efforts have been focused on establishing quality tailored reviews. These reviews prioritize clinician and academic views rather than the views of those who use them, particularly those with lived experiences of mental health problems. Given that the COVID-19 pandemic has increased reliance on web-based and mobile mental health support, understanding the views of those with mental health conditions is of increasing importance.ObjectiveThis study aimed to understand the opinions of people with mental health problems on mental health apps and how they differ from established ratings by professionals.MethodsA mixed methods study was conducted using a web-based survey administered between December 2020 and April 2021, assessing 11 mental health apps. We recruited individuals who had experienced mental health problems to download and use 3 apps for 3 days and complete a survey. The survey consisted of the One Mind PsyberGuide Consumer Review Questionnaire and 2 items from the Mobile App Rating Scale (star and recommendation ratings from 1 to 5). The consumer review questionnaire contained a series of open-ended questions, which were thematically analyzed and using a predefined protocol, converted into binary (positive or negative) ratings, and compared with app ratings by professionals and star ratings from app stores.ResultsWe found low agreement between the participants' and professionals' ratings. More than half of the app ratings showed disagreement between participants and professionals (198/372, 53.2%). Compared with participants, professionals gave the apps higher star ratings (3.58 vs 4.56) and were more likely to recommend the apps to others (3.44 vs 4.39). Participants' star ratings were weakly positively correlated with app store ratings (r=0.32, P=.01). Thematic analysis found 11 themes, including issues of user experience, ease of use and interactivity, privacy concerns, customization, and integration with daily life. Participants particularly valued certain aspects of mental health apps, which appear to be overlooked by professional reviewers. These included functions such as the ability to track and measure mental health and providing general mental health education. The cost of apps was among the most important factors for participants. Although this is already considered by professionals, this information is not always easily accessible.ConclusionsAs reviews on app stores and by professionals differ from those by people with lived experiences of mental health problems, these alone are not sufficient to provide people with mental health problems with the information they desire when choosing a mental health app. App rating measures must include the perspectives of mental health service users to ensure ratings represent their priorities. Additional work should be done to incorporate the features most important to mental health service users into mental health apps.

Dataset Information

Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.

Publications

Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.

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