Best Practice & Research Clinical Gastroenterology 28 (2014) 233–234
Contents lists available at ScienceDirect
Best Practice & Research Clinical Gastroenterology
Preface
Everything you always wanted to know about Ethical issues in gastroenterology... When asked to be responsible as Guest Editors for an issue of the journal Best Practice & Research: Clinical Gastroenterology: Ethical Issues in Gastroenterology we did not hesitate. We consented. But as sometimes happens, also to ethicists, one is not completely prepared for what one consents to. It turned out to be quite a challenge. Why? Because ethics research and the kind of publications that result from it are different from medical research (This we knew of course, but still.). Because within ethics there are many different approaches and styles (This we also knew, in fact we selected our authors in order to provide examples of such differences, but still.). Because it was difficult to choose subjects as any choice implies that other themes are not discussed although they also do deserve discussion. So what we serve is a mixture of different subjects and approaches, contributions from authors with different disciplinary backgrounds, physicians, ethicists and a literary scholar, showing the importance of interdisciplinary research in the field of applied ethics. What you will find: Inez de Beaufort in her chapter “‘Please, sir, can I have some more?’ Food, lifestyle, diets: respect and moral responsibility” discusses general issues regarding responsibility for lifestyle and eating habits, our responsibility to respect food and to contribute to bridging the food gap in the world. Clinical issues Suzanne van de Vathorst in “Artificial nutrition at the end of life: ethical issues” analyses four different situations in which withholding or stopping artificial nutrition for dying patients is considered. This issue is illustrated by a case discussion written by Rozemarijn van Bruchem-Visser et al, “Why should we not tube feed patients with severe Alzheimer dementia?” Göran Hermerén in his “Human stem-cell research in gastroenterology: experimental treatment, tourism and biobanking” describes many ethical and regulatory questions regarding stem cell treatments and research. A promising field – also for gastroenterology – that however is paved with complex ethical issues. Wim Pinxten and Heidi Howard go into whole genome sequencing, biobanking, incidental findings in their article “Ethical issues raised by whole genome sequencing”. They discuss the ethical and practical challenges doctors and researchers face when implementing WGS in clinical care and research settings. Gert van Dijk, Medard Hilhorst and Edmond Rings’ article “Liver, pancreas and small bowel transplantation: current ethical issues” is about the difficult choices to be made in living donation, and also the problems regarding dead donor transplantations. It raises both societal as well as clinical questions. Ineke Bolt and Marieke van Summeren delve into the problem of competence and informed consent of obese minors for whom bariatric surgery is considered in their “Competence assessment in minors, http://dx.doi.org/10.1016/j.bpg.2014.03.001 1521-6918/Ó 2014 Elsevier Ltd. All rights reserved.
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Preface / Best Practice & Research Clinical Gastroenterology 28 (2014) 233–234
illustrated by the case of bariatric surgery for morbidly obese children”. They defend a risk- related standard for assessing competence that can also be applied to other interventions. Subjects from the field of public health and society Marieke ten Have in her contribution “Ethical aspects of obesity prevention” discusses the ethical aspects of measures to prevent obesity and relates these to the moral framework to evaluate preventive strategies that she and her colleagues have developed and published earlier. She argues that a careful balancing of ethical arguments is of the highest importance in an era in which obesity is a very serious problem. Leonie van Dam and Michael Bretthauer in their article called “Ethical issues in colorectal cancer screening” discuss the ethical aspects of screening. Screening is offered in many countries given the fact that colon carcinoma is a major cause of death but gives rise to complex issues such as the method of screening and the question of justifying screening if people may not die from colorectal cancer but another disease. Hans-Joerg Ehni’s contribution, “Expensive cancer drugs and just health care” is about the trend of increasingly expensive pharmaceutical drugs and a fair allocation of health care costs. It is a profound analysis that, in our view, presents all the important theories and refined arguments. Matthias Kaiser deals with a heavily debated issue that is integrity in scientific biomedical research in “The Integrity of Science – Lost in Translation?”. Based on a subtle analysis of the definitions and on the cases from different fields of scientific enterprise he discusses the different integrity problems one may face. Finally Frans Meulenberg and Inez de Beaufort in their article “Fiction, Ethics and the gastroenterological journey: Ordinary Tales from Endoscopic Odysseys” present examples of literature and films regarding diseases of the digestive system and argue that such an approach provides rich or thick case descriptions that can help the reader (whether doctor or layperson) to better understand what it is like to suffer from such a disease. The ordering, though not arbitrary of course, could have been different as clinical issues and public health and societal issues are intricately linked. All contributions are about ethical issues. That is probably the only thing they have in common. Some use the classical Beauchamp and Childress four principles approach with which many doctors have been ‘raised’. Some argue for a new approach, such as Hermerén with his four question approach. Some straightly make their moral points. Others provide an overview of issues and do not take a personal normative view, well at least it may be more veiled. Some will demand maximum concentration of the non-philosophical reader, others are written in an essayist style and are easier to digest. Some are very close to daily decisions in health care, others take a more distant perspective. You will hopefully be intrigued, may be sometimes amused, sometimes challenged by the complexity of the problem or by the complexity of the solutions (or both), sometimes you will probably agree with the authors, sometimes you may strongly disagree. For all contributions we hope that they will inspire reflection on the ethical issues they discuss and lead to further debate. Inez de Beaufort, Professor of Medical Ethics1, Ineke Bolt, Assistant Professor*,1 Erasmus MC, Dept Medical Ethics and Philosophy of Medicine, PO Box 2040, 3000 CA Rotterdam, The Netherlands Corresponding author. Erasmus MC, Dept Medical Ethics and Philosophy of Medicine, Postbus 2040, 3000 CA Rotterdam, The Netherlands. Tel.: þ31 (0) 10 7043841. E-mail address: [email protected] (I. Bolt)
1
www.erasmusmc.nl/ethiek.
Contents lists available at ScienceDirect
Best Practice & Research Clinical Gastroenterology
Preface
Everything you always wanted to know about Ethical issues in gastroenterology... When asked to be responsible as Guest Editors for an issue of the journal Best Practice & Research: Clinical Gastroenterology: Ethical Issues in Gastroenterology we did not hesitate. We consented. But as sometimes happens, also to ethicists, one is not completely prepared for what one consents to. It turned out to be quite a challenge. Why? Because ethics research and the kind of publications that result from it are different from medical research (This we knew of course, but still.). Because within ethics there are many different approaches and styles (This we also knew, in fact we selected our authors in order to provide examples of such differences, but still.). Because it was difficult to choose subjects as any choice implies that other themes are not discussed although they also do deserve discussion. So what we serve is a mixture of different subjects and approaches, contributions from authors with different disciplinary backgrounds, physicians, ethicists and a literary scholar, showing the importance of interdisciplinary research in the field of applied ethics. What you will find: Inez de Beaufort in her chapter “‘Please, sir, can I have some more?’ Food, lifestyle, diets: respect and moral responsibility” discusses general issues regarding responsibility for lifestyle and eating habits, our responsibility to respect food and to contribute to bridging the food gap in the world. Clinical issues Suzanne van de Vathorst in “Artificial nutrition at the end of life: ethical issues” analyses four different situations in which withholding or stopping artificial nutrition for dying patients is considered. This issue is illustrated by a case discussion written by Rozemarijn van Bruchem-Visser et al, “Why should we not tube feed patients with severe Alzheimer dementia?” Göran Hermerén in his “Human stem-cell research in gastroenterology: experimental treatment, tourism and biobanking” describes many ethical and regulatory questions regarding stem cell treatments and research. A promising field – also for gastroenterology – that however is paved with complex ethical issues. Wim Pinxten and Heidi Howard go into whole genome sequencing, biobanking, incidental findings in their article “Ethical issues raised by whole genome sequencing”. They discuss the ethical and practical challenges doctors and researchers face when implementing WGS in clinical care and research settings. Gert van Dijk, Medard Hilhorst and Edmond Rings’ article “Liver, pancreas and small bowel transplantation: current ethical issues” is about the difficult choices to be made in living donation, and also the problems regarding dead donor transplantations. It raises both societal as well as clinical questions. Ineke Bolt and Marieke van Summeren delve into the problem of competence and informed consent of obese minors for whom bariatric surgery is considered in their “Competence assessment in minors, http://dx.doi.org/10.1016/j.bpg.2014.03.001 1521-6918/Ó 2014 Elsevier Ltd. All rights reserved.
234
Preface / Best Practice & Research Clinical Gastroenterology 28 (2014) 233–234
illustrated by the case of bariatric surgery for morbidly obese children”. They defend a risk- related standard for assessing competence that can also be applied to other interventions. Subjects from the field of public health and society Marieke ten Have in her contribution “Ethical aspects of obesity prevention” discusses the ethical aspects of measures to prevent obesity and relates these to the moral framework to evaluate preventive strategies that she and her colleagues have developed and published earlier. She argues that a careful balancing of ethical arguments is of the highest importance in an era in which obesity is a very serious problem. Leonie van Dam and Michael Bretthauer in their article called “Ethical issues in colorectal cancer screening” discuss the ethical aspects of screening. Screening is offered in many countries given the fact that colon carcinoma is a major cause of death but gives rise to complex issues such as the method of screening and the question of justifying screening if people may not die from colorectal cancer but another disease. Hans-Joerg Ehni’s contribution, “Expensive cancer drugs and just health care” is about the trend of increasingly expensive pharmaceutical drugs and a fair allocation of health care costs. It is a profound analysis that, in our view, presents all the important theories and refined arguments. Matthias Kaiser deals with a heavily debated issue that is integrity in scientific biomedical research in “The Integrity of Science – Lost in Translation?”. Based on a subtle analysis of the definitions and on the cases from different fields of scientific enterprise he discusses the different integrity problems one may face. Finally Frans Meulenberg and Inez de Beaufort in their article “Fiction, Ethics and the gastroenterological journey: Ordinary Tales from Endoscopic Odysseys” present examples of literature and films regarding diseases of the digestive system and argue that such an approach provides rich or thick case descriptions that can help the reader (whether doctor or layperson) to better understand what it is like to suffer from such a disease. The ordering, though not arbitrary of course, could have been different as clinical issues and public health and societal issues are intricately linked. All contributions are about ethical issues. That is probably the only thing they have in common. Some use the classical Beauchamp and Childress four principles approach with which many doctors have been ‘raised’. Some argue for a new approach, such as Hermerén with his four question approach. Some straightly make their moral points. Others provide an overview of issues and do not take a personal normative view, well at least it may be more veiled. Some will demand maximum concentration of the non-philosophical reader, others are written in an essayist style and are easier to digest. Some are very close to daily decisions in health care, others take a more distant perspective. You will hopefully be intrigued, may be sometimes amused, sometimes challenged by the complexity of the problem or by the complexity of the solutions (or both), sometimes you will probably agree with the authors, sometimes you may strongly disagree. For all contributions we hope that they will inspire reflection on the ethical issues they discuss and lead to further debate. Inez de Beaufort, Professor of Medical Ethics1, Ineke Bolt, Assistant Professor*,1 Erasmus MC, Dept Medical Ethics and Philosophy of Medicine, PO Box 2040, 3000 CA Rotterdam, The Netherlands Corresponding author. Erasmus MC, Dept Medical Ethics and Philosophy of Medicine, Postbus 2040, 3000 CA Rotterdam, The Netherlands. Tel.: þ31 (0) 10 7043841. E-mail address: [email protected] (I. Bolt)
1
www.erasmusmc.nl/ethiek.
