Biobanche per la ricerca

Bibliografia e ulteriore documentazione

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Beauchamp, T. L & Childress, J. SEG. (2012). Principles of biomedical ethics. New York/ Oxford, Oxford University Press, 7th ed.

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Bohannon, J. (2013). Genealogy databases enable naming of anonymous DNA donors. Science 339(6117): 262.

Brockmöller, J. & Sehrt, D. (2014). Pharmakogenomik. In: Lenk Christian et al. (Hrsg.), Handbuch Ethik und Recht der Forschung am Menschen. Heidleberg, Springer.

Büchler, A. & Dörr, B. S. (2008). Medizinische Forschung an und mit menschlichen Körpersubstanzen: Verfügungsrechte über den Körper im Spannungsfeld von Persönlichkeitsrechten und Forschungsinteressen. Zeitschrift für schweizerisches

Recht 127: 381-406.

Cambon-Thomsen, A.; Rial-Sebbag, E. & Knoppers, B. M. (2007). Trends in ethical and legal frameworks for the use of human biobanks. The European respiratory journal 30(2):

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Caulfield, T. & Kaye, J. (2009). Broad consent in biobanking: reflections on seemingly insurmountable dilemmas. Medical Law International 10: 85-100.

Cho, M. K. (2015). Preventive genomic Sequencing in the General Population: Do PGS Fly? The American Journal of Bioethics 15(7): 1-2.

Clayton, E. W.; McCullough, L. B; Biesecker, L. C., et al. (2014). Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children. The American Journal of Bioethics 14(3): 3-9.

D’Abramo, F. (2015). Biobank research, informed consent and society. Towards a new alliance? J Epidemiol Community Health 69(11): 1125-8.

Eckhardt, A.; Navarini, A. A.; Recher, A.; Rippe, K. P.; Rütsche, B.; Telser, H. & Marti,

M. (2014). Personalisierte Medizin. TA-Swiss 61/2014, Zürich, vdf Hochschulverlag AG.

Elger, B. & De Clercq, E. (2015). Collaborative projects involving research biobanks – ethical and legal aspects of data protection. Bioethica Forum 8(2): 42-46.

Elster, J. (Ed.) (1998). Deliberative Democracy. Cambridge, Cambridge University Press.

Emmert-Streib, SEG. (2012). Personalized medicine: Has it started yet? A reconstruction of the early history. Frontiers in Genetics 3: 313.

Giger, M.; Saxer, U.; Wildi, A. & Fritz, M. B. (2013). Arzneimittelrecht. Eine Wegleitung für die medizinische und pharmazeutische Praxis sowie für Behörden und Versicherer. Zürich, Schulthess.

Green, R. C.; Berg, J. S.; Grody, W. W. et al. (2013). ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine,

15(7): 565-574. Consultabile all‘indirizzo: http://dx.doi.org/10.1038/gim.2013.73

Gruberski, T. (2013). Biobank-Regelwerke im Vergleich. Digma 13(3): 102-105.

Gymrek, M.; McGuire, A. L; Golan, D; Halperin, E. & Erlich, Y. (2013). Identifying Personal Genomes by Surname Inference. Science 339: 321-324.

Haga, S. B.; Beskow, L. M. (2008). Ethical, legal and social implications of biobanks for genetics research. Advances in genetics 60: 505-544.

Hall, A. E.; Chowdhury, S.; Pashayan, N. et al. (2014). What ethical and legal principles should guide the genotyping of children as part of a personalised screening programme for common cancer? Journal of Medical Ethics 40(3): 163-167.

Hansson, M. G. (2009). Ethics and Biobanks. British Journal of Cancer (2009) 100, 8-12.

Hardy, J. & Singleton, A. (2009). Genomewide association studies and human disease.

The New England journal of medicine 360(17): 1759-1768.

Hirschberg, I.; Kahrass, H. & Strech, D. (2104). International requirements for consent in biobank research: qualitative review of research guidelines. J Med Genet 51: 773-781.

Höffe, O (2015). Gerechtigkeit: Eine philosophische Einführung. 5. Aufl. München,

C.H. Beck.

Husedzinovic, A.; Ose, D.; Schickhardt, C.; Fröhling, S. & Winkler, E. C. (2015). Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature.

European Journal of Human Genetics 23(12): 1607-14.

Joyner, M.J. & Paneth, N. (2015). Seven Questions for Personalized Medicine. JAMA,

Journal of the American Medical Association 314(10): 999-1000.

Junod, V. (2014). Transparence dans la recherche médicale: en progrès en Suisse. Rev Med Suisse 10: 2383–2385.

Kaplan, W. et al. (Eds). (2013). Priority Medicines for Europe and the World – 2013 Update. 9 July 2013, specially Chp. 8.5 Patient and citizen involvement. Consultabile all’indirizzo: www.who.int/medicines/areas/priority_medicines/en/.

Karavas, V. (2015). Humanforschungsgesetz (LRUm), Stämpflis Handkommentar,

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Krawczak, M. (2014). Genomweite Assoziationsstudien (GWAS). In: Lenk Christian et al.

(Hrsg.), Handbuch Ethik und Recht der Forschung am Menschen. Heidleberg, Springer.

Kubisch, C. (2014). Genetische Forschung. In: Lenk Christian et al. (Hrsg.), Handbuch Ethik und Recht der Forschung am Menschen. Heidelberg, Springer.

Lazaro-Muñoz, G.; Conley, J. M.; Davis, A. M.; Van Riper, M.; Walker, R. L. & Juengst,

E. T. (2015). Looking for trouble: Preventive genomic sequencing in the general population and the role of patient choice. The American Journal of Bioethics 15(7): 3-14.

Machado, H. & Silva, S. (2015). Public participation in genetic databases: crossing the boundaries between biobanks and forensic DNA databases through the principle of

solidarity. Journal of Medical Ethics 41(10): 820-824.

Manolio, T. A. (2010). Genomewide association studies and assessment of the risk of disease. The New England journal of medicine 363(2): 166-176.

Mellström, C. & Johannesson, M. (2008). Crowding out in blood donation. Was Titmuss right? Journal of the European Economic Association 6(4): 845–863.

Mooser, V. & Currat, C. (2014). The Lausanne Institutional Biobank: A new resource to catalyse research in personalised medicine and pharmaceutical sciences. Swiss Medical Weekly 144: w14033.

Moret, C.; Hurst, S. A. & Mauron, A. (2015). Variants of Unknown Significance and their impact on autonomy. The American Journal of Bioethics 15(7): 26-28.

Nature (2013). Genetic privacy. Editorial. Nature 493(7433): 451.

Ngui, E. M.; Warner, T. D. & Weiss Roberts, L. (2015). Ethical responsibilities and

perceptions of stakeholders of genetic research involving racial/ethnic minority

participants. AJOB Empirical Bioethics 6(3):15-27.

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Niza, C.; Tung, B. & Marteau, T. M. (2013). Incentivizing blood donation: systematic review and meta-analysis to test Titmuss’ hypotheses. Health psychology 32(9): 941-949.

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Prainsack, B. (2015). Three « H »s for health – The darker side of big data. Bioethica Forum 8(2): 40-41.

Prainsack, B. & Buyx, A. (2011). Solidarity: reflections on an emerging concept in bioethics, Nuffield Council on Bioethics.

Rise, M. B., Solbjor, M, Lara, M. C, et al. (2013). Same description, different values.

How service users and providers define patient and public involvement in health care.

Health Expectations 16(3): 266-276.

Rudin, B. (2013). «Generaleinwilligung» braucht Einbettung. Digma (13)3: 94-100.

Rütsche, B. & Anner, M. (2015). Humanforschungsgesetz (LRUm), Stämpflis

Handkommentar, Kommentar zu art. 42, Stämpfli Verlag, Bern.

Sénécal, K, Stanton-Jean, M. & Avard D. (2013). Favoriser l’implication du public pour accroître la légitimité des prises de décision en matière de politiques de santé ? Journal International de Bioéthique 24(4): 159-74.

Shaw, D. (2015). Paternalistic personalized medicine: Testing biosamples without consent in clinical genome sequencing. Bioethica Forum 8(2): 47-50.

Steiner, J. (2012). The Foundations of Deliberative Democracy. Empirical Research and Normative Implications, Cambridge, Cambridge University Press.

Stolz, J. (2014). Biobanques: le patient recomposé. Le Monde, 16 juin, consultabile all’indirizzo: www.lemonde.fr/sciences/article/2014/06/16/biobanques-le-patient-

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Vayena, E. & Tasioulas, J. (2013). Genetic incidental findings: Autonomy regained.

Genetics in medicine 15(11): 868-870.

Weldon, S. (2004). «Public consent» or «scientific citizenship»? What counts as public participation in population-based DNA collections? (161-180). In: R. Tutton & O. Corrigan (Eds.). Genetic Database: Socio-ethical issues in the collection and use of DNA. London/ New York, Routledge.