Beyond the Clinic: ‘Direct-to-Consumer‘ Genomic Profiling Services and Pharmacogenomics

Prainsack, Barbara; Vayena, Effy

doi:10.2217/pgs.13.10

Cited by 35Pharmacogenetics and Drug MetabolismBiomedical Ethics and RegulationHealth, Technology, Consumer Behavior

Beyond the Clinic: ‘Direct-to-Consumer‘ Genomic Profiling Services and Pharmacogenomics

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Prainsack, Barbara, Vayena, Effy·2013·Pharmacogenomics

DOI 10.2217/pgs.13.10

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Abstract

This article provides an overview of commercial pharmacogenetics and pharmacogenomics testing services offered online. The concept of 'beyond-the-clinic' (BTC) genomic testing is introduced to refer to the variety of formats in which these tests are offered and a typology of BTC models is developed. The authors review such models in relation to tests for individual drug response that are currently on offer. In conclusion, the authors argue that the evolving BTC domain provides opportunities for the pioneering of integrated data repositories, whose gatekeepers are patients or citizens. The authors anticipate that such developments will benefit pharmacogenomics sooner than other areas of medical practice.

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The growing use of self-tracking devices means that a significant amount of data can potentially be generated beyond the clinic by patients and citizens themselves, reconfiguring them as knowledge producers.
“The growing use of self-tracking devices means that, potentially, a significant amount of that data can be generated Bbeyond the clinic^ (Prainsack and Vayena 2013) by patients and citizens themselves, thus reconfiguring them as knowledge producers, not just knowledge recipients (ESF 2012).”
From Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare (2017) · cites this paper as Prainsack and Vayena 2013

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“The growing use of self-tracking devices means that, potentially, a significant amount of that data can be generated Bbeyond the clinic^ (Prainsack and Vayena 2013) by patients and citizens themselves, thus reconfiguring them as knowledge producers, not just knowledge recipients (ESF 2012).”
Background
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“C Direct-to-Consumer Services Historically, genome sequencing was a complex and expensive process that, as a result, was left to large research laboratories or diagnostic services, but in the past several years, there has been a rise in DTC (Direct-to-consumer) genome sequencing from various companies [Prainsack and V…”
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“…movement that has stemmed from the advancement of newly developed and available softwares and technologies, integrated Personal Omics Proﬁling (iPOP) and personal genomics (Prainsack and Vayena, 2013; Vayena and Tasioulas, 2013a), metadata are crucial for robust open science (Snyder et al., 2014).”
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“In the pharmacogenomics context, the term ‘ beyond-the – clinic ’ (BTC) has been suggested as an alternative to DTC (Prainsack and Vayena, 2013), however as this term is not yet generally employed, in this paper ‘ DTC ’ will be used.”
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“Nowadays, as suggested by Prainsack and Vayena (2013), it could be appropriate to refer to such phenomenon using the expression Beyond- The- Clinic (BTC) genomics to label a cluster of different practices, services, and various forms of interaction between services providers, users, and medical…”
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Authors: Prainsack, B., & Vayena, E.
Affiliations: King's College London (GB)
University of Zurich (CH)
ORCID: Prainsack, Barbara
Vayena, Effy
Venue: Pharmacogenomics
Publisher: Informa UK Limited
Published: 2013-02-25
Volume: 14
Issue: 4
Pages: 403-412
ISSN: 1462-2416 (ISSN-L)
1744-8042
DOI: 10.2217/pgs.13.10
OpenAlex: W2120799353
Cited by: 35
References: 67
Citations by year: 2023: 2 · 2022: 1 · 2021: 1 · 2019: 2 · 2018: 2 · 2016: 6 · 2015: 9 · 2014: 9 · 2013: 3
FWCI: 1.47
Type: journal article
Language: en
Open access: green
doi.org
Locations: Pharmacogenomics (publishedVersion)
PubMed (publishedVersion)
Zurich Open Repository and Archive (University of Zurich) (acceptedVersion)
Research Portal (King's College London) (submittedVersion)
Zurich Open Repository and Archive (University of Zurich) (submittedVersion)
Zurich Open Repository and Archive (University of Zurich)
Topics: Life Sciences › Pharmacology, Toxicology and Pharmaceutics › Pharmacology › Pharmacogenetics and Drug Metabolism
Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
Health Sciences › Health Professions › Health Information Management › Health, Technology, Consumer Behavior
Keywords: direct-to-consumer genetic testing, pharmacogenetic testing, commercial genetic testing
MeSH terms: Cost-Benefit Analysis, Genetic Markers, Genetic Testing, Humans, Pharmacogenetics, Genome, Human, Genomics, Biomarkers, Pharmacological

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Beyond the Clinic: ‘Direct-to-Consumer‘ Genomic Profiling Services and Pharmacogenomics

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