The ethical and legal problems connected with the activity of biobanks

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Jakub Pawlikowski
Jarosław Sak
Krzysztof Marczewski

Abstract

The paper presents the most significant ethical and legal problems connected with biobanks in the world. The issues brought up most frequently in this context are informed consent, commercialization, property rights and granting gene patents, the risk of discrimination, and a patient’s right to known and not to know. At the end the situation of Polish biobanks is analyzed with reference to European standards.

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How to Cite
Pawlikowski, Jakub, Jarosław Sak, and Krzysztof Marczewski. 2009. “The Ethical and Legal Problems Connected With the Activity of Biobanks”. Diametros, no. 19 (March):106-18. https://doi.org/10.13153/diam.19.2009.335.
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Articles
Author Biographies

Jakub Pawlikowski, Zakład Etyki i Filozofii Człowieka Uniwersytetu Medycznego w Lublinie

dr Jakub Pawlikowski - Zakład Etyki i Filozofii Człowieka Uniwersytetu Medycznego w Lublinie

Jarosław Sak, Zakład Bioetyki, Antropologii i Ogólnej Teorii Medycyny Wyższej Szkoły Zarządzania i Administracji w Zamościu

dr Jarosław Sak - Zakład Bioetyki, Antropologii i Ogólnej Teorii Medycyny Wyższej Szkoły Zarządzania i Administracji w Zamościu

Krzysztof Marczewski, Zakład Etyki i Filozofii Człowieka Uniwersytetu Medycznego w Lublinie Zakład Bioetyki, Antropologii i Ogólnej Teorii Medycyny Wyższej Szkoły Zarządzania i Administracji w Zamościu

prof. dr hab. Krzysztof Marczewski - Zakład Etyki i Filozofii Człowieka Uniwersytetu Medycznego w LublinieZakład Bioetyki, Antropologii i Ogólnej Teorii Medycyny Wyższej Szkoły Zarządzania i Administracji w Zamościu
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References

Almeida [2007] – M. Almeida, Spanish DNA Bank, „Translational medicine and public health policy: lessons from biobanks, Ethical, Legal, Social Issues (ELSI)” – Brocher Foundation Workshop, Geneva, 5-7 December 2007.
View in Google Scholar

Armson [2005] – B.A. Armson, Umbilical cord blood banking: implications for perinatal care providers, „Journal of Obstetrics and Gynaecology Canada” 27(3) 2005, s. 263-90.
View in Google Scholar

Bogdanovic, Langlands [1999] – S. Bogdanovic, B. Langlands, Pharmacogenomics players, BioFrontiers Management Report, Financial Times, London 1999.
View in Google Scholar

Brzeziński [2002] – T. Brzeziński, Etyka lekarska, PZWL, Warszawa 2002.
View in Google Scholar

European Society of Human Genetics [2003] – Data storage and DNA banking for biomedical research: technical, social and ethical issues. Recommendations of the European Society of Human Genetics, „European Journal of Human Genetics”, 11 (2003), Suppl. 2, s. S8-S10.
View in Google Scholar

Caulfield i in. [2003] – T. Caulfield, R.E.G. Upshur, A. Daar, DNA databanks and consent: A suggested policy option involving an authorization model, „BMC Medical Ethics” (4:1) 2003.
View in Google Scholar

Corrigan [2006] – O.P. Corrigan, B. Williams-Jones, Pharmacogenetics: the bioethical problem of DNA investment banking, „Studies in History and Philosophy of Biological and Biomedical Sciences” 37 (2006), s. 550-565.
View in Google Scholar

Council for International Organizations of Medical Sciences [2002] – Council for International Organizations of Medical Sciences, International ethical guidelines for biomedical research involving human subjects, CIOMS, Geneva 2002.
View in Google Scholar

Dawson [2000] – C. Dawson, Public Perceptions of the Collection of Human Biological Samples, The Wellcome Trust 2000.
View in Google Scholar

Deschênes i in. [2001] – C. Deschênes, G. Cardinal, B.M. Knoppers, K. Glass, Human genetic research, DNA banking and consent: A question of „form”?, „Clinical Genetics” 59 (2001), s. 221-239.
View in Google Scholar

First Genetic Trust [2002] – http://www.firstgenetic.com/products_icf.html Grzymkowska [2006] – M. Grzymkowska, Europejski system ochrony prawa człowieka wobec rozwoju biomedycyny [rozprawa doktorska], Uniwersytet Jagielloński, Kraków 2006.
View in Google Scholar

Hertz [1994] – D.C. Hertz, J.H. Fanos, P.R. Reill, Genetic testing for children and adolescents: who decides?, „JAMA” (272) 1994, s. 875-881.
View in Google Scholar

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

International Bioethics Committee of UNESCO [2001] – International Bioethics Committee of UNESCO, Draft Report on Collection, Treatment, Storage and Use of Genetic Data, 2001.
View in Google Scholar

International Bioethics Committee of UNESCO [2002] – International Bioethics Committee of UNESCO, Human genetic data: Preliminary study by the IBC on its collection, processing, storage and use. Paris: UNESCO. http://portal.unesco.org/shs/en/file_download.php/82e7c58d69d425a6fd9f1001 71e3c072Rapfinal_gendata_en.pdf
View in Google Scholar

Kauffman [2008] – F. Kauffman, A. Cambon-Thomsen, Tracing biological collections: Between books and clinical trials, „JAMA” (299) 2008, s. 2316-2318.
View in Google Scholar

Lynch i in. [1999] – H.T. Lynch, O. Watson, S. Tinley, Y. Kirnarsky i in., An update on DNA-Based BRCA1/BRCA2 genetic Counseling in Hereditary breast cancer, „Cancer Genetics and Cytogenetics” (109) 1999, s. 91-98.
View in Google Scholar

Hansson [2006] – M.G. Hansson, Combining efficiency and concerns about integrity when using human biobanks, „Studies in History and Philosophy of Biological and Biomedi- cal Sciences” (37) 2006, s. 520-532.
View in Google Scholar

McNally [2004] – E. McNally, A. Combon-Thomsen, 25 rekomendacji dotyczących etycznych, prawnych i społecznych implikacji badań genetycznych, Bruksela 2004.
View in Google Scholar

Merz [1999] – J.F. Merz, Psychosocial risks of storing and using human tissue in research, „Risk: Health, Safety & Environment” (8) 1997, s. 235-248.
View in Google Scholar

Moise [2007] – K.J. Moise, Co powiedzieć pacjentom o przechowywaniu komórek macierzystych z krwi pępowinowej, „Ginekologia po dyplomie” 2007 tom 9 , nr 1(47), s. 70-76.
View in Google Scholar

Molnar [2006] – M.J. Molnar, P. Bencsik, Establishing a Neurological-Psychiatric Biobank: Banking, informatics, ethics, „Cellular Immunology”( 244:2) 2006, s. 101-104.
View in Google Scholar

Mueller [1997] – M.R. Mueller, Science versus care: Physicians, nurses and the dilemma of clinical research, w: M.A. Elston (red.), The sociology of medical science and technology, Blackwell, Oxford 1997, s. 57-78.
View in Google Scholar

Shicle [2000] – D. Shicle, The consent problem within DNA biobanks, „Studies in History and Philosophy of Biological and Biomedical Sciences” (37) 2006, s. 503-519.
View in Google Scholar

Siemińska [2008] – M.J. Siemińska, Społeczne wymiary dyskursu nad badaniami genetycznymi w medycynie, w: W. Piątkowski, B. Płonka-Syroka (red.), Socjologia i antropologia medycyny w działaniu, Arboretum, Wrocław 2008, s. 41-53.
View in Google Scholar

Sobel [2000] – S. Sobel, D.B. Cowan, Impact of genetic testing for Huntington disease on the family as a system, „American Journal of Medical Genetics”, (62) 2000, s. 121-127.
View in Google Scholar

Stagmary [2002] – B. Stagmary, K. Asplund, Informed consent for genetic research on blood stored for more than a decade: A population based study, „BMJ” (325) 2002, s. 634-635.
View in Google Scholar

Surbone [2001] – A. Surbone, Ethical implications of genetic testing for breast cancer susceptibility, „Critical Reviews in Oncology/Hematology” (40) 2001, s. 149-157.
View in Google Scholar

UK Human Genetics Commission [2001] – UK Human Genetics Commission, Public atti- tudes to human genetic information: People’s Panel Quantitative Study conducted for the Human Genetics Commission, Human Genetics Commission, London 2001. http://www.hgc.gov.uk/UploadDocs/DocPub/Document/morigeneticattitudes.pdf
View in Google Scholar

Watson [1998] – M. Watson, V. Duvivier, M. Wade Walsh, S. Ashley i in., Family history of breast cancer: what do woman understand and recall about their genetic risk? „Journal of Medical Genetics” (35) 1998, s. 731-738.
View in Google Scholar

Wendler [2002] – D. Wendler, E. Emanuel, The debate over research on stored biological samples: what do sources think? „Archives of Internal Medicine” (162) 2002, s. 1457-1462.
View in Google Scholar

World Health Organisation [1998] – Proposed international guidelines on ethical issues in med- ical genetics and genetic services. Report of a WHO Meeting on Ethical Issues in Medical Genetics, Geneva 15-16 December 1997, WHO, Geneva 1998. http://www.who.int/genomics/publications/en/ethicalguidelines1998.pdf
View in Google Scholar