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Autonomie , Rationalität und angemessene Aufklärung im Kontext molekulargenetischer Zusatzbefunde

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Zufallsbefunde bei molekulargenetischen Untersuchungen

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Zusammenfassung

Die Debatten um Umfang und Inhalt der Norm einer angemessenen Berücksichtigung der Patienten- und Probandenautonomie wurden im Zusammenhang der Mitteilung molekulargenetischer Zusatzbefunde neu entfacht. Unterbestimmt bleibt dabei häufig die Rolle praktischer Rationalität für autonome Handlungen und Entscheidungen. Der nachfolgende Beitrag skizziert ein adäquates Verständnis praktischer Rationalität und erörtert die Konsequenzen für eine tatsächlich angemessene Berücksichtigung der Patienten- und Probandenautonomie im Rahmen der Mitteilung molekulargenetischer Zusatzbefunde.

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Literatur

  • Anderson J (2014) Regimes of autonomy. Ethical Theory and Moral Practice 17:355–368

    Google Scholar 

  • Bartram CR (2012) Aktuelle Aspekte der Humangenetik. In: Bartram CR, Bobbert M, Dölling D et al. (Hrsg) Der (un)durchsichtige Mensch. Wie weit reicht der Blick in die Person? Universitätsverlag Winter, Heidelberg, S 153–171

    Google Scholar 

  • Beauchamp TL, Childress JF (2013) Principles of biomedical ethics. Oxford University Press, Oxford

    Google Scholar 

  • Berg JS, Khoury MJ, Evans JP (2011) Deploying whole genome sequencing in clinical practice and public health. Meeting the challenge one bin at a time. Genetics in Medicine 13:499–504

    Article  PubMed  Google Scholar 

  • Beskow LM, Friedman JY, Hardy NC et al. (2010) Simplifying informed consent for biorepositories: stakeholder perspectives. Genetics in Medicine 12:567–572

    Article  PubMed Central  PubMed  Google Scholar 

  • Birnbacher D (2007) Analytische Einführung in die Ethik. Walter de Gruyter, Berlin

    Book  Google Scholar 

  • Boyd SD, Galli SJ, Schrijver I et al. (2014) A balanced look at the implications of genomic (and other “omics”) testing for disease diagnosis and clinical care. Genes 5:748–766

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • Brandt RB (1979) A theory of the right and the good. Clarendon Press, Oxford

    Google Scholar 

  • Bredenoord AL, Onland-Moret NC, van Delden JJM (2011) Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy. Human Mutation 32:861–867

    Article  PubMed  Google Scholar 

  • Brownsword R (2004) The cult of consent: fixation and fallacy. King‘s Law Journal 15:223–251

    Google Scholar 

  • Cheng-Guarjado L (2014) The normative requirement of means-ends rationality and modest bootstrapping. Ethical Theory and Moral Practice 17:487–503

    Google Scholar 

  • Cho MK (2008) Understanding incidental findings in the context of genetics and genomics. The Journal of Law, Medicine and Ethics 36:208–212

    Article  Google Scholar 

  • Christman J (2011) The politics of persons. Individual autonomy and sociohistorical selves. Cambridge University Press, Cambridge

    Google Scholar 

  • Clayton EW (2008) Incidental findings in genetics research using archived DNA. The Journal of Law, Medicine and Ethics 36:286–291

    Article  PubMed Central  PubMed  Google Scholar 

  • Craigie J (2011) Competence, practical rationality and what a patient values. Bioethics 25:326–333

    Article  PubMed  Google Scholar 

  • Dal-Ré R, Katsanis N, Katsanis S et al. (2014) Managing incidental genomic findings in clinical trials: fulfillment of the principle of justice. PLoS Medicine 11:e1001584

    Article  PubMed Central  PubMed  Google Scholar 

  • Deutsche Gesellschaft für Humangenetik (2013) Stellungnahme zu genetischen Zusatzbefunden in Diagnostik und Forschung. http://www.gfhev.de/de/leitlinien/LL_und_Stellungnahmen/2013_05_28_Stellungnahme_zu_genetischen_Zufallsbefunden.pdf. Zugegriffen: 20.11.2014

  • Donchin A (2000) Autonomy and interdependence. Quandaries in genetic decision making. In: Mackenzie C, Stoljar N (Hrsg) Relational autonomy. Feminist perspectives on autonomy, agency, and the social self. Oxford University Press, Oxford, S 236–258

    Google Scholar 

  • Dworkin G (1988) The theory and practice of autonomy. Cambridge University Press, Cambridge

    Google Scholar 

  • Feinberg J (1986) Harm to self: the moral limits of the criminal law. Oxford University Press, Oxford

    Google Scholar 

  • Forgó N, Petersen I, Kollek R et al. (2010) Ethical and legal requirements for transnational genetic research. C.H. Beck, München

    Book  Google Scholar 

  • Friedrich O, Heinrichs J-H (2014) Autonomie als Rechtfertigungsgrund psychiatrischer Therapien. Ethik in der Medizin 26:317–330

    Google Scholar 

  • Green RC, Berg JS, Grody WW et al. (2013) ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine 15:565–574

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • Greulich H (2010) The genomics of lung adenocarcinoma: opportunities for targeted therapies. Genes & Cancer 1:1200–1210

    Article  CAS  Google Scholar 

  • Kollek R (2009): Informed consent. Comment on Article 6. In: Ten Have HAMJ, Jean MS (Hrsg) Universal Declaration on Bioethics and Human Rights. Background, principles and application. UNESCO Publishing. Ethics series, Paris, S 123–138

    Google Scholar 

  • Langanke M, Erdmann P (2011) Die MRT als wissenschaftliche Studienuntersuchung und das Problem der Mitteilung von Zufallsbefunden. Probandenethische Herausforderungen. In: Theissen H, Langanke M (Hrsg) Tragfähige Rede von Gott. Festgabe zum 50. Geburtstag von Heinrich Assel am 9. Februar 2011. Kovac, Hamburg, S 197–240

    Google Scholar 

  • Lewis A, James P (2012) An incidental finding of a large genomic deletion of BRCA1 on a molecular karyotype for a 5 year old child. Hereditary Cancer in Clinical Practice 10(Supplement 2):A73

    Article  PubMed Central  Google Scholar 

  • Lord E (2014a) The coherent and the rational. Analytic Philosophy 55:151–175

    Article  Google Scholar 

  • Lord E (2014b) The real symmetry problem(s) for wide-scope accounts of rationality. Philosophical Studies 170:443–464

    Article  Google Scholar 

  • Lucassen A, Houlston RS (2014) The challenges of genome analysis in the health care setting. Genes 5:576–585

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • Manson NC, O'Neill O (2008) Rethinking informed consent in bioethics. Cambridge University Press, Cambridge

    Google Scholar 

  • Mardis ER, Ding L, Dooling DJ et al. (2009) Recurring mutations found by sequencing an acute myeloid leukemia genome. New England Journal of Medicine 361:1058–1066

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • McGuire AL, Beskow LM (2010) Informed consent in genomics and genetic research. Annual Review of Genomics and Human Genetics 22:361–381

    Article  Google Scholar 

  • Meacham MC, Starks H, Burke W et al. (2010) Researcher perspectives on disclosure of incidental findings in genetic research. Journal of Empirical Research on Human Research Ethics: An International Journal 5:31–41

    Article  Google Scholar 

  • Mestan KK, Ilkhanoff L, Mouli S et al (2011) Genomic sequencing in clinical trials. Journal of Translational Medicine 9:222

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • O’Neill O (2003) Autonomy: the Emperor’s new clothes. Aristotelian Society Supplementary Volume 77:1–21

    Article  Google Scholar 

  • O’Roak BJ, Deriziotis P, Lee C et al. (2011) Exome sequencing in sporadic autism spectrum disorders identifies severe de novo mutations. Nature Genetics 43:585–589

    Article  PubMed Central  PubMed  Google Scholar 

  • Owen GS, Freyenhagen F, Richardson G et al. (2009) Mental capacity and decisional autonomy: an interdisciplinary challenge. Inquiry 52:79–107

    Article  Google Scholar 

  • Parfit D (1984) Reasons and persons. Oxford University Press, Oxford

    Google Scholar 

  • Parker LS (2008) The future of incidental findings: Should they be viewed as benefits? The Journal of Law, Medicine and Ethics 36:341–351

    Article  PubMed Central  PubMed  Google Scholar 

  • Projektgruppe EURAT (2013) Eckpunkte für eine Heidelberger Praxis der Ganzgenomsequenzierung. Marsilius-Kolleg der Universität Heidelberg, Heidelberg

    Google Scholar 

  • Richardson HS (2001) Autonomy's many normative presuppositions. American Philosophical Quarterly 38:287–303

    Google Scholar 

  • Rotimi CN, Marshall PA (2010) Tailoring the process of informed consent in genetic and genomic research. Genome Medicine 2:20

    Article  PubMed Central  PubMed  Google Scholar 

  • Rudnik-Schöneborn S, Langanke M, Erdmann P et al. (2014) Ethische und rechtliche Aspekte im Umgang mit genetischen Zufallsbefunden – Herausforderungen und Lösungsansätze. Ethik in der Medizin 26:105–119

    Google Scholar 

  • Schroeder M (2008) Having reasons. Philosophical Studies 139:57–71

    Article  Google Scholar 

  • Schroeder M (2009) Means-end coherence, stringency, and subjective reasons. Philosophical Studies 143:223–248

    Article  Google Scholar 

  • Spohn W (1993) Wie kann die Theorie der Rationalität normativ und empirisch zugleich sein? In: Eckensberger LH, Gähde U (Hrsg) Ethische Norm und empirische Hypothese. Suhrkamp, Frankfurt a. Main, S 151–196

    Google Scholar 

  • Van Ness B (2008) Genomic research and incidental findings. The Journal of Law, Medicine and Ethics 36:292–297

    Article  PubMed Central  PubMed  Google Scholar 

  • Vilarino-Guell C, Wider C, Ross OA et al. (2011) VPS35 mutations in parkinson disease. The American Journal of Human Genetics 89:162–167

    Article  PubMed  Google Scholar 

  • Völzke H, Alte D, Schmidt CO et al. (2011) Cohort Profile: The study of health in Pomerania. International Journal of Epidemiology 40:294–307

    Article  PubMed  Google Scholar 

  • Vogelstein E (2014) Competence and ability. Bioethics 28:235–244

    Article  PubMed  Google Scholar 

  • Walker T (2013) Respecting autonomy without disclosing information. Bioethics 27:388–394

    Article  PubMed  Google Scholar 

  • Williams B (1979) Internal and external reasons. In: Harrison R (Hrsg) Rational action. Cambridge University Press, Cambridge, S 101–113

    Google Scholar 

  • Winkler EC, Ose D,·Glimm H et al. (2013) Personalisierte Medizin und Informed Consent: Klinische und ethische Erwägungen im Rahmen der Entwicklung einer Best Practice Leitlinie für die biobankbasierte Ganzgenomforschung in der Onkologie. Ethik in der Medizin 25:195–203

    Google Scholar 

  • Wolf SM, Lawrenz FP, Nelson CA et al (2008) Managing incidental findings in human subjects research: analysis and recommendations. The Journal of Law, Medicine and Ethics 36:219–248

    Article  PubMed Central  PubMed  Google Scholar 

  • Wolf SM, Annas GJ, Elias S (2013) Patient autonomy and incidental findings in clinical genomics. Science 340:1049–1050

    Article  PubMed Central  CAS  PubMed  Google Scholar 

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Authors and Affiliations

  1. Nationales Centrum für Tumorerkrankungen (NCT), Medizinische Onkologie, Universitätsklinikum Heidelberg, Im Neuenheimer Feld 460, 69120, Heidelberg, Deutschland

    Sebastian Schleidgen

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  1. Sebastian Schleidgen
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Correspondence to Sebastian Schleidgen .

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Editors and Affiliations

  1. Theologische Fakultät, Ernst-Moritz-Arndt Universität Greifswald, Greifswald, Germany

    Martin Langanke

  2. Theologische Fakultät, Ernst-Moritz-Arndt Universität Greifswald, Greifswald, Germany

    Pia Erdmann

  3. Center for Ethics and Law in the Life Sciences (CELLS), Leibniz Universität Hannover, Hannover, Germany

    Jürgen Robienski

  4. Institut für Humangenetik, RWTH Aachen, Aachen, Germany

    Sabine Rudnik-Schöneborn

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Schleidgen, S. (2015). Autonomie , Rationalität und angemessene Aufklärung im Kontext molekulargenetischer Zusatzbefunde. In: Langanke, M., Erdmann, P., Robienski, J., Rudnik-Schöneborn, S. (eds) Zufallsbefunde bei molekulargenetischen Untersuchungen. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-662-46217-1_12

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  • DOI: https://doi.org/10.1007/978-3-662-46217-1_12

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  • Publisher Name: Springer, Berlin, Heidelberg

  • Print ISBN: 978-3-662-46216-4

  • Online ISBN: 978-3-662-46217-1

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