This open access book offers insights in short- and long-term experiences from families with bone marrow transplantations between minor siblings. It is based on the first extended qualitative study with 17 families about experiences with recent transplants and experiences with transplants up to 20 years in the past. It covers reflections of donors, recipients and other family members, as well as family interactions. Transplantation of bone marrow from one sibling to another who is ill with a blood cancer (such as Leukemia) is a life-saving therapy. Young children however are not in a position to give consent themselves. How should they be adequately included, depending to their age? Which ethical questions are raised for the parents both at the time of treatment and afterwards, and for the medical professionals in clinical and regulatory contexts? For an in-depth discussion of the findings the books brings together a group of leading scholars from the fields of bioethics, family sociology and philosophy of medicine.
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Part I Introductory and Conceptual Considerations |
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1 The Child's Body and Bone Marrow Transplantation: Introduction |
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3 | (16) |
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2 A Donor by Coincidence or by Conception - My Sister's Keeper Revisited |
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19 | (12) |
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3 Dimensions and Tensions of the Child's Well-Being and Stem Cell Transplantation: A Conceptual Analysis |
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31 | (34) |
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Part II Mapping Responsibilities |
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4 Mapping Responsibilities: Report from the Qualitative Interview Study |
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65 | (8) |
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5 Mediating the Risks of Mutual Care: Families and the Ethical Challenges of Sibling Bone Marrow Donation |
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73 | (10) |
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6 Responsibility, Care and Illness in Family Relationships |
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83 | (14) |
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Part III Dealing with Illness |
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7 Experiences in Times of Illness: Report from the Qualitative Interview Study |
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97 | (12) |
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8 Illness and Family Decision-Making |
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109 | (16) |
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9 Dwelling on the Past: Illness, Transplantation and Families' Responsibilities in Retrospect |
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125 | (26) |
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Part IV Processes of Decision Making |
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10 Processes of Decision Making: Report from the Qualitative Interview Study |
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151 | (6) |
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11 Deciding About Child Bone Marrow Donation - Procedural Moral Pitfalls |
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157 | (14) |
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12 A Decision-Making Approach for Children to Ethically Serve as Stem Cell Donors |
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171 | (18) |
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Part V Constructing Familial Bodies |
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13 Constructing Familial Bodies: Report from the Qualitative Interview Study |
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189 | (6) |
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14 Stem Cell Transplantation, Microchimerism and Assemblages |
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195 | (18) |
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15 Intercorporeality: Giving Life from One Body to Another |
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213 | (18) |
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231 | (6) |
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| Appendix: Study Description and Additional Quotes |
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237 | (38) |
| About the Contributors |
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275 | (4) |
| Literature for Study Description and Sample |
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279 | |
Christina Schües is Professor of Philosophy in the Institute for History of Medicine and Science Studies at the University of Lübeck, and also adjunct Professor of Philosophy in the Institute of Philosophy and Sciences of Art at Leuphana University of Lüneburg. Coming from classical and post-classical phenomenology she is especially interested at the interface between epistemology, anthropology, and political ethics. Her research interests concern the relationality of the human condition in light of biomedical practices and anthropo-technologies; thereby, her focus includes the politics of the body, the power of time, and peace studies.
Christoph Rehmann-Sutter is Professor of Theory and Ethics in the Biosciences at the University of Lübeck in Germany and honorary professor of philosophy at the University of Basel, Switzerland. He has widely published in philosophy and ethics of biomedicine. Research interests include philosophical foundations of bioethics and phenomenological philosophy of biology. With a hermeneutic approach to ethics and often with qualitative empirical methods, he has been working about ethical issues of genetic engineering, of prenatal genetics, transplantation, stem cell medicine and palliative care, currently also on the ethics of climate change.
Martina Jürgensen (PhD) is a sociologist at the University of Lübeck. She has broad expertise from a series of projects in the field of medical sociology, health services research, childhood- and family studies, and qualitative methodology. Her current research focuses on children with diversity of sexual development (DSD). She was lead researcher in the project "Stem cell transplantation between siblings.
Madeleine Herzog is a medical anthropologist and practicing relationship and sex therapist. Her research interests include anthropology of family and kinship, medical anthropology, sociology and anthropology of the body and of emotions, and praxeology. She was researcher in the project "Stem cell transplantation between siblings.
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