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The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks

Direct-to-consumer (DTC) genetic testing has been a major ethical controversy related to clinical utility, the availability of pre- and post-genetic counseling, privacy concerns, and the risk of discrimination and stigmatization. The development of direct-to-consumer genetic testing cannot leave asi...

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Autores principales: Tozzo, Pamela, Caenazzo, Luciana
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7564942/
https://www.ncbi.nlm.nih.gov/pubmed/32899386
http://dx.doi.org/10.3390/biom10091273
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author Tozzo, Pamela
Caenazzo, Luciana
author_facet Tozzo, Pamela
Caenazzo, Luciana
author_sort Tozzo, Pamela
collection PubMed
description Direct-to-consumer (DTC) genetic testing has been a major ethical controversy related to clinical utility, the availability of pre- and post-genetic counseling, privacy concerns, and the risk of discrimination and stigmatization. The development of direct-to-consumer genetic testing cannot leave aside some considerations on how the samples are managed once the analyses have been completed and the customer has received a response. The possibility that these samples are maintained by the structure for future research uses, explains the definition, which has been proposed in the literature, of these structures such as private genetic biobanks. The most relevant aspects that may impact ethical aspects, allowing a comparison between the public and private dimensions of genetic biobanks, are mainly transparency and participant/donor trust. The article aims to analyze the main line of ethical debate related to the mentioned practices and to explore whether market-based and consumer rights regarding DTC genetic testing can be counterbalanced by healthcare system developments based on policies that encourage the donation of samples in the context of public biobanks. A platform for dialogue, both technical–scientific and ethical, is indispensable between the public sector, the private sector and citizens to truly maximize both transparency and public trust in both contexts.
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spelling pubmed-75649422020-10-26 The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks Tozzo, Pamela Caenazzo, Luciana Biomolecules Article Direct-to-consumer (DTC) genetic testing has been a major ethical controversy related to clinical utility, the availability of pre- and post-genetic counseling, privacy concerns, and the risk of discrimination and stigmatization. The development of direct-to-consumer genetic testing cannot leave aside some considerations on how the samples are managed once the analyses have been completed and the customer has received a response. The possibility that these samples are maintained by the structure for future research uses, explains the definition, which has been proposed in the literature, of these structures such as private genetic biobanks. The most relevant aspects that may impact ethical aspects, allowing a comparison between the public and private dimensions of genetic biobanks, are mainly transparency and participant/donor trust. The article aims to analyze the main line of ethical debate related to the mentioned practices and to explore whether market-based and consumer rights regarding DTC genetic testing can be counterbalanced by healthcare system developments based on policies that encourage the donation of samples in the context of public biobanks. A platform for dialogue, both technical–scientific and ethical, is indispensable between the public sector, the private sector and citizens to truly maximize both transparency and public trust in both contexts. MDPI 2020-09-03 /pmc/articles/PMC7564942/ /pubmed/32899386 http://dx.doi.org/10.3390/biom10091273 Text en © 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Tozzo, Pamela
Caenazzo, Luciana
The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks
title The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks
title_full The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks
title_fullStr The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks
title_full_unstemmed The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks
title_short The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks
title_sort skeleton in the closet: faults and strengths of public versus private genetic biobanks
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7564942/
https://www.ncbi.nlm.nih.gov/pubmed/32899386
http://dx.doi.org/10.3390/biom10091273
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