Danny Bruins, Suzanne M Onstwedder, Martina C Cornel, Marc H W van Mil, Margreet G E M Ausems, Olga C Damman, Tessel Rigter
{"title":"Exploring Dutch citizens' perspectives, expectations, and decision-making regarding health-related direct-to-consumer genetic testing (DTC-GT).","authors":"Danny Bruins, Suzanne M Onstwedder, Martina C Cornel, Marc H W van Mil, Margreet G E M Ausems, Olga C Damman, Tessel Rigter","doi":"10.1159/000547527","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>Qualitative insights into European citizens' beliefs, expectations, attitudes, and factors relevant for decision-making regarding health-related direct-to-consumer genetic testing (DTC-GT) are scarce. Assessment thereof is essential to eventually empower them for informed decision-making and responsible use regarding DTC-GT. Materials & Methods: Twenty semi-structured, in-person interviews were conducted with a cohort of socio-demographically diverse Dutch citizens. During the interview, participants viewed an informative video regarding DTC-GT to ensure baseline knowledge, and hypothetical company materials, including an estimated disease risk, to assess the reactions of citizens to such materials. Interviews were transcribed verbatim and thematically analyzed.</p><p><strong>Results: </strong>Participants were generally unaware of health-related DTC-GT prior to the interview invite. Participants expressed sizeable expectations across the entire DTC-GT consumer journey, and demonstrated several recurring misconceptions. Participants also indicated distrust towards DTC-GT sellers and their practices, and expressed dissatisfaction concerning the hypothetical results they received. Most participants indicated they would not be willing to undergo DTC-GT, but provided argumentation and weight of each argument were unique to each participant, indicating unique decision-making processes. Price was an important modifying factor in participants' decision-making. Participants suggested information provision by independent parties, development of quality marks, and implementation of enforceable regulation and legislation to support their decision-making.</p><p><strong>Conclusions: </strong>Participants' expectations regarding health-related DTC-GT and towards DTC-GT sellers appear sizeable, and decision-making very personal. Stimulating informed decision-making through enhancement of information provision, (social) media campaigns, education, development of quality marks, and implementation of enforceable regulation and legislation, could aid in empowering citizens for responsible use of DTC-GT.</p>","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":" ","pages":"1-36"},"PeriodicalIF":1.5000,"publicationDate":"2025-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Public Health Genomics","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1159/000547527","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
引用次数: 0
Abstract
Introduction: Qualitative insights into European citizens' beliefs, expectations, attitudes, and factors relevant for decision-making regarding health-related direct-to-consumer genetic testing (DTC-GT) are scarce. Assessment thereof is essential to eventually empower them for informed decision-making and responsible use regarding DTC-GT. Materials & Methods: Twenty semi-structured, in-person interviews were conducted with a cohort of socio-demographically diverse Dutch citizens. During the interview, participants viewed an informative video regarding DTC-GT to ensure baseline knowledge, and hypothetical company materials, including an estimated disease risk, to assess the reactions of citizens to such materials. Interviews were transcribed verbatim and thematically analyzed.
Results: Participants were generally unaware of health-related DTC-GT prior to the interview invite. Participants expressed sizeable expectations across the entire DTC-GT consumer journey, and demonstrated several recurring misconceptions. Participants also indicated distrust towards DTC-GT sellers and their practices, and expressed dissatisfaction concerning the hypothetical results they received. Most participants indicated they would not be willing to undergo DTC-GT, but provided argumentation and weight of each argument were unique to each participant, indicating unique decision-making processes. Price was an important modifying factor in participants' decision-making. Participants suggested information provision by independent parties, development of quality marks, and implementation of enforceable regulation and legislation to support their decision-making.
Conclusions: Participants' expectations regarding health-related DTC-GT and towards DTC-GT sellers appear sizeable, and decision-making very personal. Stimulating informed decision-making through enhancement of information provision, (social) media campaigns, education, development of quality marks, and implementation of enforceable regulation and legislation, could aid in empowering citizens for responsible use of DTC-GT.
期刊介绍：
''Public Health Genomics'' is the leading international journal focusing on the timely translation of genome-based knowledge and technologies into public health, health policies, and healthcare as a whole. This peer-reviewed journal is a bimonthly forum featuring original papers, reviews, short communications, and policy statements. It is supplemented by topic-specific issues providing a comprehensive, holistic and ''all-inclusive'' picture of the chosen subject. Multidisciplinary in scope, it combines theoretical and empirical work from a range of disciplines, notably public health, molecular and medical sciences, the humanities and social sciences. In so doing, it also takes into account rapid scientific advances from fields such as systems biology, microbiomics, epigenomics or information and communication technologies as well as the hight potential of ''big data'' for public health.
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