LEADER 05108nam 22006735 450 001 9910337507603321 005 20251113175608.0 010 $a3-030-04363-0 024 7 $a10.1007/978-3-030-04363-6 035 $a(CKB)4100000007522612 035 $a(DE-He213)978-3-030-04363-6 035 $a(MiAaPQ)EBC6422842 035 $a(Au-PeEL)EBL6422842 035 $a(OCoLC)1231605317 035 $a(oapen)https://directory.doabooks.org/handle/20.500.12854/32527 035 $a(PPN)233799850 035 $a(ODN)ODN0010074025 035 $a(DNLM)1746730 035 $a(EXLCZ)994100000007522612 100 $a20190116d2019 u| 0 101 0 $aeng 135 $aurnn|008mamaa 181 $ctxt$2rdacontent 182 $cc$2rdamedia 183 $acr$2rdacarrier 200 14$aThe Ethics of Medical Data Donation /$fedited by Jenny Krutzinna, Luciano Floridi 205 $a1st ed. 2019. 210 1$aCham :$cSpringer International Publishing :$cImprint: Springer,$d2019. 215 $a1 online resource (X, 198 p. 1 illus.) 225 1 $aPhilosophical Studies Series,$x2542-8349 ;$v137 311 08$a3-030-04362-2 327 $aChapter 1. Introduction (Jenny Krutzinna and Luciano Floridi) -- Part I: Conceptualising the Ethics of Medical Data Donation -- Chapter 2. Data Donation: How to Resist the iLeviathan (Barbara Prainsack) -- Chapter 3. Data Donations as Exercises of Sovereignty (Patrik Hummel, Matthias Braun and Peter Dabrock) -- Chapter 4. The Ethics of Uncertainty for Data Subjects (Philip J. Nickel) -- Chapter 5. Incongruities and Dilemmas in Data Donation: Juggling our 1s and 0s (Kerina H. Jones) -- Part II: Governance and Regulation of Medical Data Donation -- Chapter 6. Posthumous Medical Data Donation: The Case for a Regulatory Framework (Edina Harbinja) -- Chapter 7. Medical Data Donation, Consent and the Public Interest after Death: A Gateway to Posthumous Data Use (Annie Sorbie) -- Part III: Implementing Ethical Medical Data Donation -- Chapter 8. The Personal Data is Political (Bastian Greshake Tzovaras and Athina Tzovara) -- Chapter 9. Personal Data Cooperatives ? A New Data Governance Framework forData Donations and Precision Health (Ernst Hafen) -- Chapter 10. Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Road to Big Consent (David M. Shaw) -- Part IV: An Ethical Code for Posthumous Medical Data Donation -- Chapter 11. Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data (Jenny Krutzinna, Mariarosaria Taddeo and Luciano Floridi) -- Chapter 12. An Ethical Code for Posthumous Medical Data Donation (Jenny Krutzinna, Mariarosaria Taddeo and Luciano Floridi). . 330 $aThis open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one?s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. 410 0$aPhilosophical Studies Series,$x2542-8349 ;$v137 606 $aMedical policy 606 $aSocial policy 606 $aTechnology$xPhilosophy 606 $aHealth Policy 606 $aSocial Policy 606 $aPhilosophy of Technology 615 0$aMedical policy. 615 0$aSocial policy. 615 0$aTechnology$xPhilosophy. 615 14$aHealth Policy. 615 24$aSocial Policy. 615 24$aPhilosophy of Technology. 676 $a362.1 676 $a174.29069 686 $aMED036000$aPHI021000$aPOL029000$2bisacsh 700 $aKrutzinna$b Jenny$4edt$01357066 702 $aKrutzinna$b Jenny$4edt$4http://id.loc.gov/vocabulary/relators/edt 702 $aFloridi$b Luciano$4edt$4http://id.loc.gov/vocabulary/relators/edt 801 0$bMiAaPQ 801 1$bMiAaPQ 801 2$bMiAaPQ 906 $aBOOK 912 $a9910337507603321 996 $aThe Ethics of Medical Data Donation$93362399 997 $aUNINA