Literature DB >> 29705970

"I would rather have it done by a doctor"-laypeople's perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications.

Manuel Schaper1, Sabine Wöhlke2, Silke Schicktanz2.   

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.

Entities:  

Keywords:  Attitudes; Direct-to-consumer genetic testing; Focus group discussion; Laypeople; Responsibility; Trust

Mesh:

Year:  2019        PMID: 29705970     DOI: 10.1007/s11019-018-9837-y

Source DB:  PubMed          Journal:  Med Health Care Philos        ISSN: 1386-7423


  10 in total

1.  Perception of personalized medicine, pharmacogenomics, and genetic testing among undergraduates in Hong Kong.

Authors:  Nicholas Yan Chai Cheung; Jasmine Lee Fong Fung; Yvette Nga Chung Ng; Wilfred Hing Sang Wong; Claudia Ching Yan Chung; Christopher Chun Yu Mak; Brian Hon Yin Chung
Journal:  Hum Genomics       Date:  2021-08-18       Impact factor: 4.639

2.  Ethical concerns relating to genetic risk scores for suicide.

Authors:  Anna Docherty; Brent Kious; Teneille Brown; Leslie Francis; Louisa Stark; Brooks Keeshin; Jeffrey Botkin; Emily DiBlasi; Doug Gray; Hilary Coon
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2021-09-01       Impact factor: 3.568

3.  Direct to consumer genetic testing in Denmark-public knowledge, use, and attitudes.

Authors:  Anne-Marie Gerdes; Line Nicolaisen; Egil Husum; Janne Bayer Andersen; Martin Dræbye Gantzhorn; Laura Roos; Birgitte Rode Diness
Journal:  Eur J Hum Genet       Date:  2021-03-01       Impact factor: 5.351

4.  Are providers prepared for genomic medicine: interpretation of Direct-to-Consumer genetic testing (DTC-GT) results and genetic self-efficacy by medical professionals.

Authors:  Scott P McGrath; Nephi Walton; Marc S Williams; Katherine K Kim; Kiran Bastola
Journal:  BMC Health Serv Res       Date:  2019-11-25       Impact factor: 2.655

5.  "…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.

Authors:  Alexander Urban
Journal:  Front Sociol       Date:  2020-12-01

6.  Genetic testing users in Italy and Germany: Health orientation, health-related habits, and psychological profile.

Authors:  Giulia Ongaro; Eleonora Brivio; Clizia Cincidda; Serena Oliveri; Francesca Spinella; Daniela Steinberger; Ilaria Cutica; Alessandra Gorini; Gabriella Pravettoni
Journal:  Mol Genet Genomic Med       Date:  2022-02-15       Impact factor: 2.183

7.  Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset Alzheimer's disease: a qualitative study.

Authors:  Juhi Singhal; Imogen Wells; Gwenda Simons; Sabine Wöhlke; Karim Raza; Marie Falahee
Journal:  BMC Rheumatol       Date:  2022-03-02

8.  German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192).

Authors:  Sabine Wöhlke; Manuel Schaper; Serena Oliveri; Ilaria Cutica; Francesca Spinella; Gabriella Pravettoni; Daniela Steinberger; Silke Schicktanz
Journal:  Front Genet       Date:  2020-03-18       Impact factor: 4.599

9.  From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.

Authors:  Jacqueline Savard; Chriselle Hickerton; Sylvia A Metcalfe; Clara Gaff; Anna Middleton; Ainsley J Newson
Journal:  AJOB Empir Bioeth       Date:  2019-12-30

10.  My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.

Authors:  Carolin Martina Rauter; Sabine Wöhlke; Silke Schicktanz
Journal:  J Med Syst       Date:  2021-02-22       Impact factor: 4.460

  10 in total

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