Elimination of Health Records
A Patient's Right?
DOI:
https://doi.org/10.14422/rib.i13.y2020.010Keywords:
right to be forgotten, personal health records, privacy, confidentiality, public healthAbstract
Patients' access to their health data has become a common issue in recent years, raising some ethical issues surrounding privacy and security of access. “The right to be forgotten", that is, the right to allow an individual to request the removal of their health data, is now a possibility, and this poses some new problems. We believe it should not be possible to universalize the right of a patient to erase health data, without evaluating the effects that the elimination of this information may have on the health of certain individuals or populations. The right of an individual to eliminate his health data should be assessed on a case-by-case basis, considering the possible consequences in different ways.
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Lee, E. H., Patel, J. P., & Fortin, A. H. (2017). Patient-centric medical notes: Identifying areas for improvement in the age of open medical records. Patient Education and Counseling, 100(8), 1608-1611. DOI: https://doi.org/10.1016/j.pec.2017.02.018
Serviços Partilhados do Ministério da Saúde [SPMS] (2017). Privacidade da Informação no setor da Saúde. Lisboa: Autor. Disponível em http://ciberseguranca.spms.min-saude.pt/wp-content/uploads/2018/03/Guia-Privacidade-SMPS_RGPD_digital_20.03.172-v.2.pdf , consultado a 02/09/2017.
Gagnon, M. P., Payne-Gagnon, J., Breton, E., Fortin, J. P., Khoury, L., Dolovich, L., … Archer, N. (2016). Adoption of electronic personal health records in Canada: perceptions of stakeholders. International Journal of Health Policy and Management, 5(7), 425-433. DOI: https://doi.org/10.15171/ijhpm.2016.36
Roehrs, A., Costa, C. A., Righi, R. R., & de Oliveira, K. S. F. (2017). Personal health records: a systematic literature review. Journal of Medical Internet Research, 19(1), e13. DOI: https://doi.org/10.2196/jmir.5876
Information Commissioner’s Office [ICO] (2017). Overview of the general data protection regulation. London: Autor. Disponível: https://ico.org.uk/media/for-organisations/data-protection-reform/overview-of-the-gdpr-1-13.pdf , consultado a 20/11/2017.
Mann, P., Savulescu, J., & Sahakian, B. J. (2016). Facilitating the ethical use of health data for the benefit of society: electronic health records, consent and the duty of easy rescue. Philosophical Transactions of the Royal Society A, 374(2083), 1-17. DOI: https://doi.org/10.1098/rsta.2016.0130
Ermakova, T., Fabian, B., Kelkel, S., Wolff, T., & Zarnekowa, R. (2015). Antecedents of health information privacy concerns. Procedia Computer Science, (63), 376-383. DOI: https://doi.org/10.1016/j.procs.2015.08.356
Campos, E. M. C. G. C. (2009). Acesso a dados pessoais de saúde contidos em ficheiros dos hospitais públicos: ponderação entre o direito de acesso à informação e aos documentos administrativos e o direito à protecção de dados pessoais: quem e como decide? (Tese de mestrado). Instituto Superior de Ciências do Trabalho e da Empresa, Instituto Universitário de Lisboa, Lisboa. Disponível em https://repositorio.iscte-iul.pt/bitstream/10071/2064/1/TESE%20-%20Eduardo%20Carvalho%20Campos.pdf , consultado a 2/10/2017.
Starlet, I. W. (2016). Mark Tushnet e as assim chamadas dimensões (“gerações”) de direitos humanos e fundamentais: Breves Notas. Revista Estudos Institucionais, 2(2), 498-516. Disponível em https://estudosinstitucionais.com/REI/article/view/80/97 , consultado a 2/09/2017.
Associação para a Promoção e Desenvolvimento da Sociedade da Informação [APDSI] (2014). O tratamento de dados pessoais em Portugal. Breve guia prático. Lisboa: Autor. Disponível em http://www.apdsi.pt/uploads/news/id802/Guia%20Pr%C3%A1tico_Vers%C3%A3o%20FINAL.pdf , consultado a 2/11/2017.
Ozair, F. F., Jamshed, N., Sharma, A., & Aggarwal, P. (2015). Ethical issues in electronic health records: A general overview. Perspectives in Clinical Research, 6(2), 73-76. DOI: https://doi.org/10.4103/2229-3485.153997
European Commission (2014). Factsheet on the “right to be forgotten” rulling. Bruxelas: Autor. Disponível em http://ec.europa.eu/justice/data-protection/files/factsheets/factsheet_data_protection_en.pdf , consultado a 7/10/2017.
Presser, L., Hruskova, M., Rowbottom, H., & Kancir, J. (2015). Care data and access to UK health records: patient privacy and public trust. Technology Science [Internet]. Disponível em https://techscience.org/a/2015081103/download.pdf , consultado a 7/10/2017.
Quantin, C., Coatrieux, G., Allaert, F. A., Fassa, M., Bourquard, K., Boire, J-Y., … Breton, V. (2009). New advanced technologies to provide decentralised and secure access to medical records: case studies in Oncology. Cancer Informatics, 7, 217-229. DOI: https://doi.org/10.4137/CIN.S965
Willliams, M. (2011). Confidentiality of the medical records of HIV-positive patients in the United Kingdom – a medicolegal and ethical perspective. Risk Management and Healthcare Policy, 4, 15-26. Disponível em https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3270929/pdf/rmhp-4-015.pdf , consultado a 10/09/2017.
Conselho Nacional de Ética para as Ciências da Vida (2000). Parecer sobre o sigilo médico – 32/CNECV/2000. Lisboa: Autor. Disponível em http://www.cnecv.pt/admin/files/data/docs/1273057546_P032_SigiloMedico.pdf , consultado a 10/09/2017.
Bodypositive (2017). HIV & disclosure. Auckland: Autor. Disponível em https://www.bodypositive.org.nz/Pages/HIV_and_Disclosure/ , consultado a 10/09/2017.
Smith, J. (2016). Europe’s Shifting Response to HIV/AIDS: From human rights to risk management. Health and human rights journal. Disponível em https://www.hhrjournal.org/2016/11/europes-shifting-response-tohivaids-from-human-rights-to-risk-management , consultado a 23/11/2017.
Fonseca, J. (2005, 11 de novembro). Viseu fala em surdina de morte de prostituta. Diário de Notícias. Disponível em https://www.dn.pt/arquivo/2005/interior/viseu-fala-em-surdina-de-morte-de-prostituta-628684.html , consultado a 23/11/2017
Hazin, R., Brothers, K. B., Malin, B. A., Koenig, B. A., Sanderson, S. C., Rothstein, M. A., ... Kullo, I. J. (2013). Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genetics in Medicine, 15(10), 810-816. DOI: https://doi.org/10.1038/gim.2013.117
Shoenbill, K., Fost, N., Tachinardi, U., & Mendonça, E. A. (2014). Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations. Journal of the American Medical Informatics Association, 21, 171-180. DOI: https://doi.org/10.1136/amiajnl-2013-001694
Assembleia da República [AR] (2014). Decreto-Lei nº 126/2014 de 22 de agosto. Adaptação da Entidade Reguladora da Saúde, ao regime estabelecido na lei-quadro das entidades reguladoras. Diário da República, I Série (n.º 161), 4400-4416.
Rustad, M. L. & Kulevska, S. (2015). Reconceptualizing the right to be forgotten to enable transatlantic data flow. Harvard Journal of Law & Technology, 28, 349-417. Disponível em https://jolt.law.harvard.edu/assets/articlePDFs/v28/28HarvJLTech349.pdf, consultado a 10/09/2017.
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