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It's much more grey than black and white : clinical geneticists' views on the oversight of consumer genomics in Europe

Kalokairinou, Louiza ; Borry, Pascal and Howard, Heidi C LU (2020) In Personalized Medicine 17(2). p.129-140
Abstract

Aim: Direct-to-consumer (DTC) genetic tests (GT) have created controversy regarding their risks and benefits. In view of recent regulatory developments, this article aims to explore the attitudes of European clinical geneticists toward the oversight of DTC GT. Materials & methods: Fifteen semi-structured interviews were performed with clinical geneticists based in ten European countries. The transcripts were thematically analysized in an iterative process. Results & conclusion: Respondents strongly supported quality standards for DTC GT equal to those applied within the healthcare setting. Despite participants unanimously considering the involvement of healthcare professionals to be important, mandatory medical supervision was... (More)

Aim: Direct-to-consumer (DTC) genetic tests (GT) have created controversy regarding their risks and benefits. In view of recent regulatory developments, this article aims to explore the attitudes of European clinical geneticists toward the oversight of DTC GT. Materials & methods: Fifteen semi-structured interviews were performed with clinical geneticists based in ten European countries. The transcripts were thematically analysized in an iterative process. Results & conclusion: Respondents strongly supported quality standards for DTC GT equal to those applied within the healthcare setting. Despite participants unanimously considering the involvement of healthcare professionals to be important, mandatory medical supervision was controversial. In this regard, promoting education and truth-in-advertising was considered as being key in maintaining a balance between protecting consumers and promoting their autonomy.

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Please use this url to cite or link to this publication:
author
; and
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Direct-To-Consumer Screening and Testing/legislation & jurisprudence, Europe, Genetic Counseling/legislation & jurisprudence, Genetic Testing/standards, Genomics, Humans, Mentoring
in
Personalized Medicine
volume
17
issue
2
pages
129 - 140
publisher
Future Science
external identifiers
  • scopus:85082542270
  • pmid:32154757
ISSN
1744-828X
DOI
10.2217/pme-2019-0064
language
English
LU publication?
no
id
ebea5d6b-3517-461e-9fe9-f6455d1b52d4
date added to LUP
2021-11-01 09:48:34
date last changed
2024-03-23 13:28:14
@article{ebea5d6b-3517-461e-9fe9-f6455d1b52d4,
  abstract     = {{<p>Aim: Direct-to-consumer (DTC) genetic tests (GT) have created controversy regarding their risks and benefits. In view of recent regulatory developments, this article aims to explore the attitudes of European clinical geneticists toward the oversight of DTC GT. Materials &amp; methods: Fifteen semi-structured interviews were performed with clinical geneticists based in ten European countries. The transcripts were thematically analysized in an iterative process. Results &amp; conclusion: Respondents strongly supported quality standards for DTC GT equal to those applied within the healthcare setting. Despite participants unanimously considering the involvement of healthcare professionals to be important, mandatory medical supervision was controversial. In this regard, promoting education and truth-in-advertising was considered as being key in maintaining a balance between protecting consumers and promoting their autonomy.</p>}},
  author       = {{Kalokairinou, Louiza and Borry, Pascal and Howard, Heidi C}},
  issn         = {{1744-828X}},
  keywords     = {{Direct-To-Consumer Screening and Testing/legislation & jurisprudence; Europe; Genetic Counseling/legislation & jurisprudence; Genetic Testing/standards; Genomics; Humans; Mentoring}},
  language     = {{eng}},
  number       = {{2}},
  pages        = {{129--140}},
  publisher    = {{Future Science}},
  series       = {{Personalized Medicine}},
  title        = {{It's much more grey than black and white : clinical geneticists' views on the oversight of consumer genomics in Europe}},
  url          = {{http://dx.doi.org/10.2217/pme-2019-0064}},
  doi          = {{10.2217/pme-2019-0064}},
  volume       = {{17}},
  year         = {{2020}},
}