Donor rights in selected European population biobanks (in Polish)

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Published: Jun 1, 2012
DOI: https://doi.org/10.13153/diam.32.2012.479
Keywords:
population biobanks, donor rights, informed consent, privacy

Main Article Content

Jakub Pawlikowski
Medical University of Lublin

Abstract

Population biobanks offer new opportunities for biomedical research, and are fundamental for the development of personalized medicine and public health genomics. On the other hand they demand new rules in order to guarantee donor rights (informed consent, privacy, confidentiality, non-discrimination). The main dimensions of respecting donor rights are: good communication skills with society (public consultation) and with individual donors (informed consent), appropriate biobanks organization (secure IT system, encoding and data anonymization, access to data), supervisory systems (Ethics Committees and Research Committees) and legal norms concerning the storage, management and transfer of samples and data, and non-discrimination rules. The article presents population biobanks in selected European countries (UK, Spain, Estonia) in the context of donor rights in the process of biobanking.

Article Details

How to Cite
“Donor Rights in Selected European Population Biobanks (in Polish)”. 2012. Diametros, no. 32 (June): 91-109. https://doi.org/10.13153/diam.32.2012.479.
Issue
No. 32 (2012)
Section
Special topic – Bioethics and genetics

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Author Biography

Jakub Pawlikowski, Medical University of Lublin

Jakub Pawlikowski, MD, PhD
Department of Ethics and Human Philosophy
Medical University of Lublin
Ul. Szkolna 18
20-124 Lublin
e-mail: jpawlikowski@wp.pl

How to Cite

“Donor Rights in Selected European Population Biobanks (in Polish)”. 2012. Diametros, no. 32 (June): 91-109. https://doi.org/10.13153/diam.32.2012.479.
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References

Almeida [2010] - Almeida Parra M., El Banco Nacional de ADN, un biobanco de apoyo a la investigacion genetica/genomica en biomedicina, “El Medico” (1111) 2010, s. 23-35.

Bolouri [2010] – Bolouri H., Personal Genomics and Personalized Medicine, Imperial College Press, London, 2010.

Budimir [2011] – Budimir D., Polasek O., Marusic A. et all, Ethical aspects of human biobanks: a systematic review, “Croat. Med. J.” 52(3) 2011, s. 262-279.

Caulfield [2004] – Caufield T., Tissue banking, patient rights, and confidentiality: tensions in law and policy, “Med. Law.” 23(1) 2004, s. 39-49.

Corrigan [2006] – Corrigan O.P., Williams-Jones B., Pharmacogenetics: the bioethical problem of DNA investment banking, “Stud. Hist. Philos. Biol. Biomed. Sci.” (37) 2005, s. 550-565.

Hansson [2004] - Hansson S.O., The Ethics of Biobanks, “Cambridge Quarterly of Healthcare Ethics” (13) 2004, s. 319–326.

Horrobin [2000] - Horrobin D.F., Innovation in the pharmaceutical industry, “Journal of the Royal Society of Medicine” 93(7) 2000, s. 341–345.

Human Genes Research Act, passed 13 December 2000 (RT I 2000, 104,685); zmiany 14.02.2007 (RT I 2007, 22, 111).

Metspalu [2004] – Metspalu A., The Estonian Genome Project, “Drug Development Re- search” (62) 2004, s. 96-101.

McNelly, Combon-Thomsen [2004] – McNelly E., Combon-Thomsen A., 25 Recommendations on the ethical, legal and social implications of genetic testing, Brussels 2004, dostępne na: http://ec.europa.eu/research/conferences/2004/genetic/pdf/re commendations_en.pdf [19.12.2011].

OECD [2009] – OECD, Guidelines on Human Biobanks and Genetic Research Databases. OECD Publishing, 2009, dostępne na: http://www.oecd.org/document/12/ 0,3343,en_2649_34537_40302092_1_1_1_1,00&&en-USS_01DBC.html [19.12.2011].

Palsson [2007] – Palsson G., Anthropology and the New Genetics, Cambridge University Press, Edinburgh 2007, s. 94-95.

Pawlikowski, Sak, Marczewski [2009] – Pawlikowski J., Sak J., Marczewski K., Problemy etyczne i prawne związane z działalnością biobanków, „Diametros” (19) 2009, s. 106-118.

Pawlikowski [2010] – Pawlikowski J., Sak J., Marczewski K., The analysis of the ethical, organizational and legal aspects of Polish biobanks activity, “The European Journal of Public Health” 20(6) 2010, s. 707-710.

Pawlikowski [2011] – Pawlikowski J., Sak J., Marczewski K., Biobank research and ethics: the problem of informed consent in Polish biobanks, “Arch. Med. Sci.” (7)5 2011, s. 896-901.

Shicle [2006] – Shicle D., The consent problem within DNA biobanks, “Studies in History and Philosophy of Biol & Biomed Sci.” 37(3) 2006, s. 503-519.

Statistics Estonia, dostępne na: http://www.stat.ee/main-indicators.

Tutton, Corrigan [2004] – Tutton R., Corrigan O., Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA, Routledge, London 2004, s. 3.

UK Biobank Coordinating Centre [2007] – UK Biobank: Protocol for a large-scale prospective epidemiological resource, 2007, dostępne na: http://www.ukbiobank. ac.uk/wp-content/uploads/2011/11/UK-Biobank-Protocol.pdf [19.12.2011].

UK Human Genetics Commission [2000] – Public Attitudes to Human Genetic Information. London: MORI Social Research 2000.

Wendler [2002] – Wendler D., Emanuel E., The debate over research on stored biological samples: what do sources think?, “Arch. Intern. Med.” (162) 2002, s. 1457-1462.

Yuille et al. [2010] – Yuille M., Dixon K., Platt A., Pullum S., Lewis D., Hall A., Ollier W., The UK DNA Banking Network: a “fair access” biobank, “Cell Tissue Bank” (11) 2010, s. 241-251.