Information Provision Regarding Health-Related Direct-to-Consumer Genetic Testing for Dutch Consumers: An in-Depth Content Analysis of Sellers’ Websites

Author:

Bruins Danny1ORCID,Onstwedder Suzanne M.12,Cornel Martina C.1ORCID,Ausems Margreet G. E. M.3ORCID,van Mil Marc H. W.45ORCID,Rigter Tessel12ORCID

Affiliation:

1. Section Community Genetics, Department of Human Genetics, Amsterdam Public Health Research Institute, Personalized Medicine, Amsterdam UMC, Vrije Universiteit Amsterdam, 1105 AZ Amsterdam, The Netherlands

2. Center for Health Protection, National Institute for Public Health and the Environment, 3721 MA Bilthoven, The Netherlands

3. Department of Genetics, Division Laboratories, Pharmacy and Biomedical Genetics, University Medical Center Utrecht, 3584 CX Utrecht, The Netherlands

4. Center of Education and Training, University Medical Center Utrecht, 3584 CX Utrecht, The Netherlands

5. Center for Molecular Medicine, University Medical Center Utrecht, 3584 CX Utrecht, The Netherlands

Abstract

Background: Previous studies have suggested that information offered by sellers of health-related direct-to-consumer genetic tests (DTC-GTs) is often incomplete, unbalanced, or too difficult to understand. The extent to which this is the case for sellers accessible to Dutch consumers has not previously been studied. Methods and Goals: The present study aimed to assess the completeness, balance, readability, and findability of informational content on a selection of websites from several health-related DTC-GT sellers accessible to Dutch consumers. An in-depth content analysis was performed based on a recently published checklist outlining key items for policy guidance regarding DTC-GT services. Results: The information provided by sellers did not equally cover all aspects relevant to health-related DTC-GT service provision. The provided information was slightly unbalanced, with benefits of health-related DTC-GT usage being overemphasized compared to its risks and limitations. The readability of the provided information was low, on average requiring college education for proper understanding. A findability analysis showed that information concerning all themes is overall relatively evenly distributed across analyzed sellers’ websites. Conclusions: Information provision by assessed health-related DTC-GT sellers is suboptimal regarding completeness, balance, and readability. To better empower potential consumers to make an informed decision regarding health-related DTC-GT usage, we advocate industry-wide enhancement of information provision.

Funder

Netherlands Organisation for Health Research and Development

Publisher

MDPI AG

Reference31 articles.

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5. Rigter, T., Jansen, M.E., van Klink-de Kruijff, I.E., and Onstwedder, S.M. (2020). Kansen en Risico’s Van DNA-Zelftesten, National Institute for Public Health and the Environment.

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