ArticleMedicine, health care, and philosophy2019
"I would rather have it done by a doctor"-laypeople's perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications.
Article in Medicine, health care, and philosophy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 35 citations in OpenAlex.
- Views and experiences regarding workplace genetic testing: findings from a national survey of U.S. employees.Journal of community genetics · 2026Article
- Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents.Public health genomics · 2025Article
- Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset Alzheimer's disease: a qualitative study.BMC rheumatology · 2022Article
- Genetic testing users in Italy and Germany: Health orientation, health-related habits, and psychological profile.Molecular genetics & genomic medicine · 2022Article
- Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing.Public health genomics · 2022Article
- Ethical concerns relating to genetic risk scores for suicide.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2021Article
- Perception of personalized medicine, pharmacogenomics, and genetic testing among undergraduates in Hong Kong.Human genomics · 2021Article
- Direct to consumer genetic testing in Denmark-public knowledge, use, and attitudes.European journal of human genetics : EJHG · 2021Article
- My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.Journal of medical systems · 2021Article
- European citizens' perspectives on direct-to-consumer genetic testing: an updated systematic review.European journal of public health · 2020Article
- "…This Has to Do With My Identity. And I Don't Want to Make it Totally Transparent." Identity Relevance in the Attitudes of Affected People and Laypersons to the Handling of High-Throughput Genomic Data.Frontiers in sociology · 2020Article
- German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192).Frontiers in genetics · 2020Article
- Are providers prepared for genomic medicine: interpretation of Direct-to-Consumer genetic testing (DTC-GT) results and genetic self-efficacy by medical professionals.BMC health services research · 2019Article
- How Uncertainty Influences Lay People's Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication.Frontiers in genetics · 2019Article
- From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
Abstract
Direct-to-consumer genetic testing (DTC GT) has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople's awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups (participants n = 43) with German laypeople to explore their perceptions of and attitudes towards commercial genetic testing and its ethical implications. Participants were critical towards DTC GT. Criticism was directed at health-related, predictive testing, while lifestyle tests were accepted and even welcomed to some extent. Participants expressed strong reservations regarding commercial provision of genetic diagnostics and expressed a lack of trust in respective companies. They preferred non-commercial distribution within the public healthcare system. Participants also expressed high expectations of physicians' abilities to interpret information obtained via DTC GT companies and provide counseling. Legal restrictions on commercial distribution of genetic tests were opposed, with participants arguing that it should be available to consumers. DTC GT companies are not perceived as trustworthy when compared to the public healthcare system and its professional ethical standards and practices. Laypeople rated general consumer autonomy higher than their own concerns, thus recommending against strong legal regulation. We conclude that medicine's trustworthiness may be negatively affected if commercial provision is not visibly opposed by the medical professions, while DTC GT companies may gain in trustworthiness if they adapt to standards and practices upheld in medicine.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.