It's much more grey than black and white : clinical geneticists' views on the oversight of consumer genomics in Europe
(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.
(Less)
- author
- Kalokairinou, Louiza ; Borry, Pascal and Howard, Heidi C LU
- publishing date
- 2020-03
- 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 & 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.</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}}, }