語系:
繁體中文
English
說明(常見問題)
登入
回首頁
切換:
標籤
|
MARC模式
|
ISBD
Ethics, Law and Governance of Bioban...
~
Mascalzoni, Deborah.
Ethics, Law and Governance of Biobanking = National, European and International Approaches /
紀錄類型:
書目-語言資料,印刷品 : Monograph/item
正題名/作者:
Ethics, Law and Governance of Biobanking/ edited by Deborah Mascalzoni.
其他題名:
National, European and International Approaches /
其他作者:
Mascalzoni, Deborah.
面頁冊數:
VIII, 277 p.online resource. :
Contained By:
Springer Nature eBook
標題:
Medical ethics. -
電子資源:
https://doi.org/10.1007/978-94-017-9573-9
ISBN:
9789401795739
Ethics, Law and Governance of Biobanking = National, European and International Approaches /
Ethics, Law and Governance of Biobanking
National, European and International Approaches /[electronic resource] :edited by Deborah Mascalzoni. - 1st ed. 2015. - VIII, 277 p.online resource. - The International Library of Ethics, Law and Technology,141875-0044 ;. - The International Library of Ethics, Law and Technology,14.
Introduction; Deborah Mascalzoni -- Biobanks: a definition; Barbara Parodi -- A participatory space beyond the "autonomy versus property" dichotomy; Mariachiara Tallacchini -- Intellectual Property and Biobanks; Naomi Hawkins -- Consent, Privacy and Property in the Italian Biobanks Regulation: A Hybrid Model within EU?; Matteo Macilotti, Simone Penasa, Marta Tomasi -- Data Protection Principles and Research in the Biobanks Age; Roberto Lattanzi -- The New General Data Protection Regulation – where are we are and where might we be heading?; Jane Reichel and Anna-Sara Lind -- The Tension between Data Sharing and the Protection of Privacy in Genomics Research; Jane Kaye -- Incidental findings: the time is not yet ripe for a policy for biobanks; Jennifer Viberg, Mats G. Hansson, Sophie Langenskiöld, Pär Segerdahl -- Biobanking across borders: the challenges of harmonization; Ruth Chadwick, Heather Strange -- Governing Biobanks Through A European Infrastructure; Emmanuelle Rial-Sebbag, Anne Cambon-Thomsen -- EU governance for research and ethics in biobanks; Jane Reichel -- A Bold Experiment: Iceland’s Genomic Venture ; David Winickoff -- The Estonian Genome Center, University of Tartu; Aime Keis -- The management of the ethical aspects of a local mental diseases biobank for research purposes. An Italian experience; Corinna Porteri -- Biobank governance in Spain: From the autonomy of research ethics committees to the autonomy of lay people; Antonio Casado da Rocha -- Public deliberation and the role of stakeholders as a new frontier in the governance of science: the British Columbia Biobank Deliberation and the DePGx Project; Claudio Corradetti, Gillian Bartlett -- Making researchers moral; Linus Johnsson, Stefan Eriksson, Gert Helgesson, Mats G. Hansson.
Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks.Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldn’t only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.
ISBN: 9789401795739
Standard No.: 10.1007/978-94-017-9573-9doiSubjects--Topical Terms:
559096
Medical ethics.
LC Class. No.: QH332
Dewey Class. No.: 610.1
Ethics, Law and Governance of Biobanking = National, European and International Approaches /
LDR
:05014nam a22004455i 4500
001
962711
003
DE-He213
005
20200704062532.0
007
cr nn 008mamaa
008
201211s2015 ne | s |||| 0|eng d
020
$a
9789401795739
$9
978-94-017-9573-9
024
7
$a
10.1007/978-94-017-9573-9
$2
doi
035
$a
978-94-017-9573-9
050
4
$a
QH332
050
4
$a
R724-726.2
072
7
$a
PSAD
$2
bicssc
072
7
$a
MED050000
$2
bisacsh
072
7
$a
PSAD
$2
thema
072
7
$a
MB
$2
thema
082
0 4
$a
610.1
$2
23
082
0 4
$a
174.2
$2
23
245
1 0
$a
Ethics, Law and Governance of Biobanking
$h
[electronic resource] :
$b
National, European and International Approaches /
$c
edited by Deborah Mascalzoni.
250
$a
1st ed. 2015.
264
1
$a
Dordrecht :
$b
Springer Netherlands :
$b
Imprint: Springer,
$c
2015.
300
$a
VIII, 277 p.
$b
online resource.
336
$a
text
$b
txt
$2
rdacontent
337
$a
computer
$b
c
$2
rdamedia
338
$a
online resource
$b
cr
$2
rdacarrier
347
$a
text file
$b
PDF
$2
rda
490
1
$a
The International Library of Ethics, Law and Technology,
$x
1875-0044 ;
$v
14
505
0
$a
Introduction; Deborah Mascalzoni -- Biobanks: a definition; Barbara Parodi -- A participatory space beyond the "autonomy versus property" dichotomy; Mariachiara Tallacchini -- Intellectual Property and Biobanks; Naomi Hawkins -- Consent, Privacy and Property in the Italian Biobanks Regulation: A Hybrid Model within EU?; Matteo Macilotti, Simone Penasa, Marta Tomasi -- Data Protection Principles and Research in the Biobanks Age; Roberto Lattanzi -- The New General Data Protection Regulation – where are we are and where might we be heading?; Jane Reichel and Anna-Sara Lind -- The Tension between Data Sharing and the Protection of Privacy in Genomics Research; Jane Kaye -- Incidental findings: the time is not yet ripe for a policy for biobanks; Jennifer Viberg, Mats G. Hansson, Sophie Langenskiöld, Pär Segerdahl -- Biobanking across borders: the challenges of harmonization; Ruth Chadwick, Heather Strange -- Governing Biobanks Through A European Infrastructure; Emmanuelle Rial-Sebbag, Anne Cambon-Thomsen -- EU governance for research and ethics in biobanks; Jane Reichel -- A Bold Experiment: Iceland’s Genomic Venture ; David Winickoff -- The Estonian Genome Center, University of Tartu; Aime Keis -- The management of the ethical aspects of a local mental diseases biobank for research purposes. An Italian experience; Corinna Porteri -- Biobank governance in Spain: From the autonomy of research ethics committees to the autonomy of lay people; Antonio Casado da Rocha -- Public deliberation and the role of stakeholders as a new frontier in the governance of science: the British Columbia Biobank Deliberation and the DePGx Project; Claudio Corradetti, Gillian Bartlett -- Making researchers moral; Linus Johnsson, Stefan Eriksson, Gert Helgesson, Mats G. Hansson.
520
$a
Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks.Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldn’t only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.
650
0
$a
Medical ethics.
$3
559096
650
0
$a
Civil law.
$3
869545
650
0
$a
Ethics.
$3
555769
650
1 4
$a
Theory of Medicine/Bioethics.
$3
671734
650
2 4
$a
Civil Law.
$3
671948
700
1
$a
Mascalzoni, Deborah.
$4
edt
$4
http://id.loc.gov/vocabulary/relators/edt
$3
1066077
710
2
$a
SpringerLink (Online service)
$3
593884
773
0
$t
Springer Nature eBook
776
0 8
$i
Printed edition:
$z
9789401795722
776
0 8
$i
Printed edition:
$z
9789401795746
776
0 8
$i
Printed edition:
$z
9789402405217
830
0
$a
The International Library of Ethics, Law and Technology,
$x
1875-0044 ;
$v
14
$3
1257573
856
4 0
$u
https://doi.org/10.1007/978-94-017-9573-9
912
$a
ZDB-2-SME
912
$a
ZDB-2-SXM
950
$a
Medicine (SpringerNature-11650)
950
$a
Medicine (R0) (SpringerNature-43714)
筆 0 讀者評論
多媒體
評論
新增評論
分享你的心得
Export
取書館別
處理中
...
變更密碼[密碼必須為2種組合(英文和數字)及長度為10碼以上]
登入