Biobanks as resources for health:
Gespeichert in:
| Weitere Verfasser: | |
|---|---|
| Format: | Buch |
| Sprache: | English |
| Veröffentlicht: |
Uppsala
Res. Progr. Ethics in Biomed.
2003
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| Schlagworte: | |
| Online-Zugang: | Inhaltsverzeichnis Inhaltsverzeichnis |
| Beschreibung: | 276 S. |
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Datensatz im Suchindex
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| adam_text | Contents
1. Biobanks as resources for health 9
Mats G. Hansson K Marianne Levin
1. Introduction 9
2. Biobanking is not a new phenomenon 12
3. A great variety of research projects for realising the potential of 13
biobanks
4. Partnership for the benefit of patients 14
5. Swedish law recognises both research interests and the interests of 15
integrity
6. The new legislation opens the way to pragmatic solutions and 15
minimises the risk of arbitrariness
7. A Swedish standard for information and consent procedures 17
8. The importance of agreements on disposition both over the 18
biobanks and biological material
2. Clinical data a necessary requirement for realising the potential of 22
biobanks
Bo S Lindberg
1. Introduction 21
2. Biobanks in Clinical Praxis 22
3. Basic science and translational research 23
4. What kind of clinical information is needed? 24
5. Examples of diseases and the need for clinical and related data 26
6. Pharmaco genetics 30
7. Gene therapy 30
8. What is the task of the physician? 30
3. Examples from Swedish biobank research 33
Magnus Kaijser
1. Introduction 33
2. Collection of Swedish biobank material 33
3. Examples 34
4. Clinical genomics companies and biobanks The use of biosamples 57
in commercial research on the genetics of common diseases
Jens Laage Hellman
1. Introduction 51
2. The clinical genomics company: some features 52
3. The commercial use of biobanks: important issues 57
4. The methodology of the study 62
5. deCode Genetics 62
6. Oxagen 65
7. UmanGenomics 68
8. Comparative analysis 70
9. Concluding remarks 87
5. Public law aspects on the use of biobank samples 91
Privacy versus the interests of research
Elisabeth Rynning
1. Introduction 91
2. Some rights and interests to consider 92
3. Recent legal developments 96
4. Human biological material a carrier of personal data 99
5. Parts of the human body as raw material 103
6. Using Swedish biobank materials in research 105
7. Conclusions 115
8. Closing remarks 121
6. Focusing on personal integrity violation legal guidelines for ethical 129
practice
Ulrik von Essen
1. Introduction 129
2. The Ethical Review Act 130
3. Access to research material 136
4. Review by the Boards for Research Ethics 140
7. A Swedish standard for information and consent procedures in 149
biobank research
Gert Helgesson
1 Introduction 149
2. Biobanks and information on individuals 149
3. Informed consent 151
4. Values at stake 152
5. General and specific information 153
6. Consent 155
7. Discussion 159
8. Mapping the debate on informed consent 165
Stefan Eriksson
1. Introduction 165
2. Short overview of the debate leading up to the Biobanks Act 166
3. Some topics debated during the legislation process 172
9. Public and patient perception of biobanks and informed consent 197
Lena Ring K Asa Kettis Lindblad
1. Introduction 197
2. Empirical research on the views of the general public and patients 198
regarding research on biobank material and informed consent
procedures an international perspective
3. The Swedish public s perceptions of research using biobanks and 201
informed consent procedures a pilot study
10. Intellectual property and biobanks 207
Asa Helktadius, Sanna Wolk £ Richard Wessman
1. Introduction 207
2. The biobank, the market and the law 209
3. Exclusive rights to biobanks 212
4. Who owns the biobank? 220
5. Summary 223
11. Gifts and donations 227
Annina H Persson
1. Gifts and donations 227
2. Terminology 228
3. Who donates human biological material 230
4. Who receives human biological material? 233
5. Gifts 234
6. Object of gifts 236
7. Donations 239
8. Object of donations 242
9. Comparison between gifts and donations 242
10. A comparative analysis of deeds of gift and donors forms 243
11. Makers of gifts and donors 245
12. Recipients of gifts and donees 246
13. Conclusions 248
12. Commercial engagement and public research in the biomedical area 255
Vila Bjorkman
13. Agreements concerning human biological material 257
Urban Paulsson K Rebecka Frisk
1. Background 257
2. General overview agreements and scope of article 257
3. Key clauses 260
4. Conclusion 267
14. Publications and activities 269
1. Project reports 269
2. Scientific publications 270
3. Popular science/reviews 271
4. Conference and seminar contributions 271
5. Project activities 276
|
| adam_txt |
Contents
1. Biobanks as resources for health 9
Mats G. Hansson K Marianne Levin
1. Introduction 9
2. Biobanking is not a new phenomenon 12
3. A great variety of research projects for realising the potential of 13
biobanks
4. Partnership for the benefit of patients 14
5. Swedish law recognises both research interests and the interests of 15
integrity
6. The new legislation opens the way to pragmatic solutions and 15
minimises the risk of arbitrariness
7. A Swedish standard for information and consent procedures 17
8. The importance of agreements on disposition both over the 18
biobanks and biological material
2. Clinical data a necessary requirement for realising the potential of 22
biobanks
Bo S Lindberg
1. Introduction 21
2. Biobanks in Clinical Praxis 22
3. Basic science and translational research 23
4. What kind of clinical information is needed? 24
5. Examples of diseases and the need for clinical and related data 26
6. Pharmaco genetics 30
7. Gene therapy 30
8. What is the task of the physician? 30
3. Examples from Swedish biobank research 33
Magnus Kaijser
1. Introduction 33
2. Collection of Swedish biobank material 33
3. Examples 34
4. Clinical genomics companies and biobanks The use of biosamples 57
in commercial research on the genetics of common diseases
Jens Laage Hellman
1. Introduction 51
2. The clinical genomics company: some features 52
3. The commercial use of biobanks: important issues 57
4. The methodology of the study 62
5. deCode Genetics 62
6. Oxagen 65
7. UmanGenomics 68
8. Comparative analysis 70
9. Concluding remarks 87
5. Public law aspects on the use of biobank samples 91
Privacy versus the interests of research
Elisabeth Rynning
1. Introduction 91
2. Some rights and interests to consider 92
3. Recent legal developments 96
4. Human biological material a carrier of personal data 99
5. Parts of the human body as raw material 103
6. Using Swedish biobank materials in research 105
7. Conclusions 115
8. Closing remarks 121
6. Focusing on personal integrity violation legal guidelines for ethical 129
practice
Ulrik von Essen
1. Introduction 129
2. The Ethical Review Act 130
3. Access to research material 136
4. Review by the Boards for Research Ethics 140
7. A Swedish standard for information and consent procedures in 149
biobank research
Gert Helgesson
1 Introduction 149
2. Biobanks and information on individuals 149
3. Informed consent 151
4. Values at stake 152
5. General and specific information 153
6. Consent 155
7. Discussion 159
8. Mapping the debate on informed consent 165
Stefan Eriksson
1. Introduction 165
2. Short overview of the debate leading up to the Biobanks Act 166
3. Some topics debated during the legislation process 172
9. Public and patient perception of biobanks and informed consent 197
Lena Ring K Asa Kettis Lindblad
1. Introduction 197
2. Empirical research on the views of the general public and patients 198
regarding research on biobank material and informed consent
procedures an international perspective
3. The Swedish public's perceptions of research using biobanks and 201
informed consent procedures a pilot study
10. Intellectual property and biobanks 207
Asa Helktadius, Sanna Wolk £ Richard Wessman
1. Introduction 207
2. The biobank, the market and the law 209
3. Exclusive rights to biobanks 212
4. Who owns the biobank? 220
5. Summary 223
11. Gifts and donations 227
Annina H Persson
1. Gifts and donations 227
2. Terminology 228
3. Who donates human biological material 230
4. Who receives human biological material? 233
5. Gifts 234
6. Object of gifts 236
7. Donations 239
8. Object of donations 242
9. Comparison between gifts and donations 242
10. A comparative analysis of deeds of gift and donors'forms 243
11. Makers of gifts and donors 245
12. Recipients of gifts and donees 246
13. Conclusions 248
12. Commercial engagement and public research in the biomedical area 255
Vila Bjorkman
13. Agreements concerning human biological material 257
Urban Paulsson K Rebecka Frisk
1. Background 257
2. General overview agreements and scope of article 257
3. Key clauses 260
4. Conclusion 267
14. Publications and activities 269
1. Project reports 269
2. Scientific publications 270
3. Popular science/reviews 271
4. Conference and seminar contributions 271
5. Project activities 276 |
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| spelling | Biobanks as resources for health ed. by Mats G. Hansson ... Uppsala Res. Progr. Ethics in Biomed. 2003 276 S. txt rdacontent n rdamedia nc rdacarrier Banques de tissus Banques de tissus - Droit Biological Specimen Banks Biotechnology Schweden Sweden Hansson, Mats J. edt application/pdf http://swbplus.bsz-bw.de/bsz114722315inh.pdf Inhaltsverzeichnis HBZ Datenaustausch application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=015962479&sequence=000002&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis |
| spellingShingle | Biobanks as resources for health Banques de tissus Banques de tissus - Droit Biological Specimen Banks Biotechnology |
| title | Biobanks as resources for health |
| title_auth | Biobanks as resources for health |
| title_exact_search | Biobanks as resources for health |
| title_exact_search_txtP | Biobanks as resources for health |
| title_full | Biobanks as resources for health ed. by Mats G. Hansson ... |
| title_fullStr | Biobanks as resources for health ed. by Mats G. Hansson ... |
| title_full_unstemmed | Biobanks as resources for health ed. by Mats G. Hansson ... |
| title_short | Biobanks as resources for health |
| title_sort | biobanks as resources for health |
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