Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals

Detalhes bibliográficos
Autor(a) principal: Amorim, Mariana
Data de Publicação: 2022
Outros Autores: Silva, Susana, Machado, Helena, Teles, Elisa Leão, Baptista, Maria João, Maia, Tiago, Nwebonyi, Ngozi, de Freitas, Cláudia
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: https://hdl.handle.net/1822/80327
Resumo: Assessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefits and risks of sharing genomic data for research, and its associated factors. The three participant groups expressed significantly different views. The majority of patients (84.3%) and informal carers (87.4%) selected the discovery of a cure for untreatable diseases as the most important benefit. In contrast, most healthcare professionals revealed a preference for the development of new drugs and treatments (71.4%), which was the second most selected benefit by carers (48.3%), especially by the more educated (OR (95% CI): 1.58 (1.07–2.34)). Lack of security and control over information access and the extraction of information exceeding research objectives were the two most often selected risks by patients (72.6% and 50.3%, respectively) and carers (60.0% and 60.6%, respectively). Conversely, professionals were concerned with genomic data being used to discriminate citizens (68.3%), followed by the extraction of information exceeding research objectives (54.0%). The latter risk was more frequently expressed by more educated carers (OR (95% CI): 1.60 (1.06–2.41)) and less by those with blue-collar (OR (95% CI): 0.44 (0.25–0.77) and other occupations (OR (95% CI): 0.44 (0.26–0.74)). Developing communication strategies and consent approaches tailored to participants’ expectations and needs can benefit the inclusiveness of genomics research that is key for patient-centred care.
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spelling Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionalsrare diseasesdata sharinggenomics researchrisksdata governancepublic viewsCiências Médicas::Ciências da SaúdeScience & TechnologyAssessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefits and risks of sharing genomic data for research, and its associated factors. The three participant groups expressed significantly different views. The majority of patients (84.3%) and informal carers (87.4%) selected the discovery of a cure for untreatable diseases as the most important benefit. In contrast, most healthcare professionals revealed a preference for the development of new drugs and treatments (71.4%), which was the second most selected benefit by carers (48.3%), especially by the more educated (OR (95% CI): 1.58 (1.07–2.34)). Lack of security and control over information access and the extraction of information exceeding research objectives were the two most often selected risks by patients (72.6% and 50.3%, respectively) and carers (60.0% and 60.6%, respectively). Conversely, professionals were concerned with genomic data being used to discriminate citizens (68.3%), followed by the extraction of information exceeding research objectives (54.0%). The latter risk was more frequently expressed by more educated carers (OR (95% CI): 1.60 (1.06–2.41)) and less by those with blue-collar (OR (95% CI): 0.44 (0.25–0.77) and other occupations (OR (95% CI): 0.44 (0.26–0.74)). Developing communication strategies and consent approaches tailored to participants’ expectations and needs can benefit the inclusiveness of genomics research that is key for patient-centred care.This work was funded by FEDER through the Operational Programme for Competitiveness and Internationalisation and national funding from the Foundation for Science and Technology-FCT (Portuguese Ministry of Science, Technology and Higher Education) (Ref. POCI-01-0145-FEDER032194), under the project Public and patient involvement in health data governance: a peoplecentred approach to data protection in genetic diseases (Ref. FCT PTDC/SOC-SOC/32194/2017) and the Unidade de Investigacao em Epidemiologia-Instituto de Saude Publica da Universidade do Porto (EPIUnit) (Ref. UIDB/04750/2020), Laboratorio para a Investigacao Integrativa e Translacional em Saude Populacional (ITR) (LA/P/0064/2020), the individual contract grant DL57/2016/CP1336/CT0001 (C.d.F).Multidisciplinary Digital Publishing InstituteUniversidade do MinhoAmorim, MarianaSilva, SusanaMachado, HelenaTeles, Elisa LeãoBaptista, Maria JoãoMaia, TiagoNwebonyi, Ngozide Freitas, Cláudia2022-07-192022-07-19T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttps://hdl.handle.net/1822/80327engAmorim, M.; Silva, S.; Machado, H.; Teles, E.L.; Baptista, M.J.; Maia, T.; Nwebonyi, N.; de Freitas, C. Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals. Int. J. Environ. Res. Public Health 2022, 19, 8788. https://doi.org/10.3390/ijerph191487881661-78271660-460110.3390/ijerph1914878835886636https://www.mdpi.com/1660-4601/19/14/8788info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2024-05-11T07:12:48Zoai:repositorium.sdum.uminho.pt:1822/80327Portal AgregadorONGhttps://www.rcaap.pt/oai/openairemluisa.alvim@gmail.comopendoar:71602024-05-11T07:12:48Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
title Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
spellingShingle Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
Amorim, Mariana
rare diseases
data sharing
genomics research
risks
data governance
public views
Ciências Médicas::Ciências da Saúde
Science & Technology
title_short Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
title_full Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
title_fullStr Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
title_full_unstemmed Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
title_sort Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
author Amorim, Mariana
author_facet Amorim, Mariana
Silva, Susana
Machado, Helena
Teles, Elisa Leão
Baptista, Maria João
Maia, Tiago
Nwebonyi, Ngozi
de Freitas, Cláudia
author_role author
author2 Silva, Susana
Machado, Helena
Teles, Elisa Leão
Baptista, Maria João
Maia, Tiago
Nwebonyi, Ngozi
de Freitas, Cláudia
author2_role author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Universidade do Minho
dc.contributor.author.fl_str_mv Amorim, Mariana
Silva, Susana
Machado, Helena
Teles, Elisa Leão
Baptista, Maria João
Maia, Tiago
Nwebonyi, Ngozi
de Freitas, Cláudia
dc.subject.por.fl_str_mv rare diseases
data sharing
genomics research
risks
data governance
public views
Ciências Médicas::Ciências da Saúde
Science & Technology
topic rare diseases
data sharing
genomics research
risks
data governance
public views
Ciências Médicas::Ciências da Saúde
Science & Technology
description Assessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefits and risks of sharing genomic data for research, and its associated factors. The three participant groups expressed significantly different views. The majority of patients (84.3%) and informal carers (87.4%) selected the discovery of a cure for untreatable diseases as the most important benefit. In contrast, most healthcare professionals revealed a preference for the development of new drugs and treatments (71.4%), which was the second most selected benefit by carers (48.3%), especially by the more educated (OR (95% CI): 1.58 (1.07–2.34)). Lack of security and control over information access and the extraction of information exceeding research objectives were the two most often selected risks by patients (72.6% and 50.3%, respectively) and carers (60.0% and 60.6%, respectively). Conversely, professionals were concerned with genomic data being used to discriminate citizens (68.3%), followed by the extraction of information exceeding research objectives (54.0%). The latter risk was more frequently expressed by more educated carers (OR (95% CI): 1.60 (1.06–2.41)) and less by those with blue-collar (OR (95% CI): 0.44 (0.25–0.77) and other occupations (OR (95% CI): 0.44 (0.26–0.74)). Developing communication strategies and consent approaches tailored to participants’ expectations and needs can benefit the inclusiveness of genomics research that is key for patient-centred care.
publishDate 2022
dc.date.none.fl_str_mv 2022-07-19
2022-07-19T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv https://hdl.handle.net/1822/80327
url https://hdl.handle.net/1822/80327
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv Amorim, M.; Silva, S.; Machado, H.; Teles, E.L.; Baptista, M.J.; Maia, T.; Nwebonyi, N.; de Freitas, C. Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals. Int. J. Environ. Res. Public Health 2022, 19, 8788. https://doi.org/10.3390/ijerph19148788
1661-7827
1660-4601
10.3390/ijerph19148788
35886636
https://www.mdpi.com/1660-4601/19/14/8788
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Multidisciplinary Digital Publishing Institute
publisher.none.fl_str_mv Multidisciplinary Digital Publishing Institute
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
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reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
repository.mail.fl_str_mv mluisa.alvim@gmail.com
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