Evidence map›Paper›PMID 29705970›Full record

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.

Manuel Schaper, Sabine Wöhlke, Silke Schicktanz

Open access · greenAbstract read
PubMed Publisher
In one paragraph

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.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed
7.3field-weighted citation impact, top 3% of its field
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

15 citing papers in PubMed, 35 citations in OpenAlex.

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  6. 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 · 2021
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

3 authors at 1 institution in 1 country.

Manuel SchaperDepartment of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073, Göttingen, Germany. manuel.schaper@medizin.uni-goettingen.de.ORCID http://orcid.org/0000-0002-2385-5031
Sabine WöhlkeDepartment of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073, Göttingen, Germany.
Silke SchicktanzDepartment of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073, Göttingen, Germany.
Universitätsmedizin Göttingen · DE

Funding

Riksbankens Jubileumsfond 1351730
6 · The paper itself

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

Attitude to HealthConsumer BehaviorAdvertisingDirect-To-Consumer Screening and TestingGenetic CounselingGenetic TestingGermanyHumansSocial PerceptionAttitudesDirect-to-consumer genetic testingFocus group discussionLaypeopleResponsibilityTrust

Identifiers

PMID29705970
OpenAlexW2799789164

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.