Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals
Autor(a) principal: | |
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Data de Publicação: | 2022 |
Outros Autores: | , , , , , , |
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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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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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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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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1817545240832114688 |