Lecture Series on Bioethics

Course coördinators: Prof. Dr. Pascal Borry and Prof. Dr. Paul Schotsmans

The three universities jointly organise a Lecture Series on Bioethics (Leuven 3 ECTS, Nijmegen and Padova each 1.5 ECTS) that cover a whole range of actual and controversial issues in the field of bioethics and various experts are invited to talk.

Due to the flexible structure of the Lectures Series, they will make it possible to include visiting scholars and new controversial issues that are not covered sufficiently in existing courses. The aim of the Lecture Series on Bioethics is to devote time and attention to various actual and controversial topics in the field of bioethics.

Programme

Venue: Pentalfa, Gasthuisberg

You shall not let anyone die alone. Emmanuel Levinas’ Ethics of suffering

By Prof. Dr. Roger Burggraeve

Current ideas in applied ethics regarding the assistance for the dying, specifically palliative care, all too easily gets bogged down by formal procedures, techniques and methods if they are not anchored in a global view on the human and on the responsibility that lies, or rather should lie, at the foundation of every concrete approach. Hence, in our contribution we would like to develop a general, foundational view on responsible care for the suffering and the dying other. Our guide in all this will be Emmanuel Levinas (1905-1995). His multifaceted concept of responsibility-through-and-for-the-other, seems to us to be particularly suited to provide a philosophical basis for the interpretation of the medical and caring assistance for the suffering and the dying other. Starting from Levinas’ concept of the vulnerability of the face of the other, in a first part different aspects of suffering are described. In the second part the suffering of the other will be explicated as an ethical appeal to specific forms of medical and caring responsibility, culminating in a new categorical imperative which radicalises that responsibility.

Prof. Dr. Roger Burggraeve is professor emeritus of Theological Ethics at the Faculty of Theology, Katholieke Universiteit Leuven, Belgium. His research activities have been focused on the writings of Levinas. In 1986 he co-founded the Leuven Centre for Peace Ethics (K.U.Leuven) with a view to contribute to the fundamental ethical and theological study of the themes of war and peace. As visiting professor he actually teaches courses in ethics at the International Insitute 'Lumen Vitae' (Brussels) and at Dharmarama College (India).

Background literature:

R. BURGGRAEVE, "You Shall Not Let Anyone Die Alone. Responsible Care for Suffering and Dying People," in: P. SCHOTSMANS & T. MEULENBERGS (eds.) Euthanasia and Palliative Care in the Low Countries, Ethical Perspectives Monograph Series 3, Leuven-Paris-Dudley, Peeters, 2005, pp. 147-173.

R. BURGGRAEVE, Proximity with the Other. A Multidimensional Ethic of Responsibility in Levinas, Bangalore (India), Dharmaram Publications, 2009, 152 p.

Venue: Pentalfa, Gasthuisberg

Children and biobanks, what are the ethical issues?

By Dr. Kristien Hens

The storage and use of biological samples for genetic research in biobanks raises ethical questions with regard to consent, risks, privacy and commercialization. The issue is further complicated when participants are minors. In this talk I shall first give an overview of different types of biobanks and the ethical issues involved. In the second half of the lecture we shall focus on the questions regarding genetic research on stored tissue samples on minors. Specifically, we shall deal with the issues of parental consent, risks and the return of individual results.

Dr. Kristien Hens is working as a postdoctoral researcher at the University of Maastricht, in the department of Health, Ethics and Society. In 2010 she finished a PhD on the topic of children and biobanks at the Katholieke Universiteit Leuven. Her current project involves the ethical issues of whole genome sequencing and preimplantation diagnostics.

Background literature:

Kristien Hens, Herman Nys, Jean-Jacques Cassiman, Kris Dierickx, The return of individual research findings in paediatric genetic research. Journal of Medical Ethics E-pub.

Kristien Hens, Herman Nys, Jean-Jacques Cassiman, Kris Dierickx, Risks, benefits, solidarity: a framework for the participation of children in genetic biobank research. Journal of Pediatrics 2011 (5) 158, 842-848.

Venue: Pentalfa, Gasthuisberg

What is just health care?

By Prof. Dr. Yvonne Denier

What does just health care imply? Does it mean that people have a right to health care? Does it entail that there are rights-based social obligations to provide equal access to health care for everyone? And if so, why? Why are health care interests so important that they deserve special protection? What kind of social good is health care? What are its functions and do these make different from other commodities? Furthermore, how much equality should there be in health care? What inequalities are morally acceptable and how should the burdens of achieving equality be distributed? To what extent should we allow personal responsibility to play a role in allocating health care services and resources, or in distributing the costs? And what does just health care require with regard to long-term care for the chronically ill and irreversibly dependent? Since the 90’s, issues of scarcity, priority setting, and rationing lie at the centre of most current debates on health care. These are pressing issues: one way or another, limits have to be set. As such, the question of what is involved in just health care becomes much more complex. This complexity can be represented as an incompatible triad, a set of three propositions of which any two are compatible but which together form a contradiction. In the case of health care, the three rival values are: efficiency, justice, and decent-quality care. It seems to be that we can have any two but not all three. In my contribution, I will attempt to answer the question how health care can be incorporated into a theory of justice, while realizing an acceptable balance between efficiency, justice, and care.

Yvonne Denier (°1976) studied Philosophy and Applied Ethics at the KULeuven. In 2005, she obtained a Doctoral Degree in Philosophy with a study on justice in health care, which has been published as Efficiency, Justice and Care. Philosophical Reflections on Scarcity in Health Care (Springer, 2007). She has been visiting researcher at the Internationales Zentrum für Ethik in den Wissenschaften in Tübingen, and at the Hastings Center in New York. She is Ethical Advisor of Zorgnet Vlaanderen, a large employers’ organization uniting over 500 health care organizations in Flanders: hospitals, care provisions for elderly and organizations providing mental health care. She is also Assistant Professor of Medical Ethics at the Centre for Biomedical Ethics and Law (Faculty of Medicine, KULeuven). Her research focuses on health care ethics, organizational ethics, end-of-life care ethics, and theories of distributive justice. She also teaches on these subjects and has published in several internationally peer-reviewed journals. She also participates as an ethicist in several ethics committees on local and community level in Flanders. She is a member of the Belgian Advisory Council on Bioethics.

Background literature:

Yvonne Denier, Mind the gap! Three approaches to scarcity in health care. Medicine Health Care and Philosophy (2008) 11: 73-87.

Yvonne Denier, On personal responsibility and the human right to healthcare, Cambridge Quarterly of Health care Ethics (2005) 14: 224-234.

Venue: Holy Spirit College

The law about ending a patient’s life on request in Belgium and the Netherlands

By Prof. Dr. Herman Nys

This presentation discusses the Belgian law on euthanasia (2002) by comparing it with its Dutch counterpart. The definition of euthanasia, the request of the patient, the health status required, the obligations of the physician and the ex post evaluation will be analysed and commented.

Herman Nys obtained a degree of master (1974) and doctor (1980) in law at the K.U.Leuven. He specialized in Medical Law at various European universities (Nijmegen, London). He teaches Medical Law in the Medical and Law School of the K.U.Leuven and has been a guest professor at the Université Catholique de Louvain. From 1999 till 2006 he has been professor in International Health Law at the University of Maastricht (the Netherlands). He is consultant biolaw to Unesco. He is the author of a standardwork on Belgian Medical Law that was published in Dutch (1991) and French (1995). He is the editor of the International Encyclopaedia of Medical Law, a looseleaf review of medical law of many national states. His main research interests are genetics, biomedical research with human beings and end of life. He is past-president of the Advisory Group on Ethics of Europabio and member of the Belgian Advisory Council on Bioethics and different institutional ethics committees. He was vice president of the 14th World Congress on Medical Law in Maastricht, August 2002.

Background literature:

Herman Nys. Euthanasia in the Low countries: A comparative Analysis of the Law regarding Euthanasia in Belgium and the Netherlands. Ethical Perspectives 9 (2002) 2-3: 73-85.

The Belgian Act on Euthanasia of May, 28^th 2002. Ethical Perspectives 9 (2002) 2-3: 182-188.

Monday 14 November 2011, 16.00-17:30

Venue: Pentalfa, Gasthuisberg

Working title: Ethics of cancer screening: information or persuasion?

By Prof. Dr. Martin Hiele

Screening for cancer (colon and breast cancer, cervical and prostate cancer) is an important public health issue. Screening programs for detection of cancer in an early stage (or for colon cancer in a precursor stage) is organized in many industrialized countries. An important issue for a successful screening program, is a high participation rate. There is debate in literature about the aim and modalities of the information that should be given to people invited for participation. Should the information primarily try to convince as many participants as possible (Bekker, 2010), or should it be as balanced as possible to offer the opportunity to people to make an informed choice (Hersch, 2011). These 2 viewpoints will be discussed, and comparisons with other situations from preventive and curative medicine will be made.

Martin Hiele is professor of gastroenterology at the University of Leuven. He is president of the Ethics Committee of the University Hospitals Leuven.

Background literature:

Bekker HL. Decision aids and uptake of screening. BMJ 2010;341:948-949.

Hersch J, Jansen J, Irwig L, et al. How do we achieve informed choice for women considering breast screening? Preventive Medicine, 2011: http://dx.doi.org/10.1016/j.ypmed.2011.06.013

Venue: Holy Spirit College

Ethical aspects of using mentally incompetent persons and children as living organ sources

By Prof. Dr. Sigrid Sterckx

Confronted with a growing demand for transplantation and an insufficient supply of cadaveric organs, transplant centres and desperate patients have increasingly turned to living donors to alleviate the organ shortage. As a result, in some countries that operate an ‘opt-in’ system for post-mortem organ donation, the amount of living donor organs presently even exceeds the number of deceased donor organs. However, despite the widespread use of living donors, the supply of organs still falls well short of demand. In a further effort to reduce organ scarcity, various strategies to enlarge the pool of living donors are being examined. In some (European as well as non-European) countries, the ongoing liberalisation of living donor criteria has resulted in the acceptance of using mentally incompetents and children as living organ sources. However, since minors and mentally incompetent persons are deemed to be incapable of giving free and informed consent that would justify being subjected to a procedure that is not in their own medical interest and may significantly harm them, this raises serious ethical issues. In this lecture we will investigate the ethical legitimacy of using mentally incompetent persons and children as living organ sources. Our ethical analysis will be illustrated with various examples of legal frameworks and court rulings.

Sigrid Sterckx is a Professor of Ethics at Ghent University. She lectures courses in Theoretical Ethics, Methods in Ethics, Contemporary Continental Ethics and Global Ethics. Her current research focuses on: ethical aspects of biobanking, organ transplantation and patenting of human body material; ethical issues regarding human enhancement (attempts to enhance non-disease related traits); medical decision-making at the end of life; environmental ethics and governance, particularly in relation to climate change; and ethical aspects of the patent system. Sigrid Sterckx also serves on various advisory boards and commissions, including the Belgian Advisory Council on Bioethics, which advises the Federal Government. She is an ethics consultant for various EU research projects.

Background literature:

Sören Holm, The child as organ and tissue donor: discussions in the Danish Council of Ethics. Cambridge Quaterly of Healthcare Ethics (2004) 13: 156-160.

Cara Cheyette, Organ harvests from the legally incompetent: An argument against compelled altruism (2000) 41: 465-515.

Venue: Pentalfa, Gasthuisberg

Living longer: curse or blessing?

By Drs. Laura Capitaine

Man has forever been enthralled by the quest for interventions enabling the prolongation of human life. Throughout the centuries, this enterprise has taken different forms, ranging from the use of alchemy to the consumption of various dietary supplements. Today, this search continues, but under the auspices of a respectable science: biogerontology. Biogerontologists study the human ageing process in the hope that this will enable them to pave the way for extensions of the human lifespan. Recent developments within this field are promising. An overview of the most important aforementioned developments will be presented during the first part of this lecture. The prospect of an extended lifespan is greeted by some with joy and by others with fear. This fear is based on the realization that a substantially extended lifespan will very likely bring about radical changes to our lives, both at the individual and the societal level. The second part of this lecture will involve a discussion of the main ethical implications surrounding life extension.

Biography

Laura Capitaine has a Master’s degree in Philosophy (Ghent University) and an Erasmus Mundus Master of Bioethics (Catholic University of Leuven, Case Western Reserve University, Università degli Studi di Padova). Laura’s doctoral research consists of an ethical analysis of the use of age as a criterion for decision making in health care. The analysis takes place within the broader framework of theories of distributive justice. Special attention is paid to intergenerational justice, to the various models for the use of age as a criterion (such as the ‘fair innings’ model) and to the relationship between age and the generally applied standard of Quality Adjusted Life Years (QALYs). In addition, some more specific problems associated with age, such as lifespan extension and anti-ageing, age in the context of both medically assisted reproduction and organ donation, are addressed.

Background literature:

Juengst ET, Binstock RH, Mehlman M, Post SG, Whitehouse P. Biogerontology, "anti-aging medicine," and the challenges of human enhancement. Hastings Cent Rep 2003;33:21-30.

Lucke JC, Hall W. Strong and weak lifespan extension: What is most feasible and likely? Australasian Journal on Ageing 2006;25:58-62.

Venue: Pentalfa, Gasthuisberg

Preconceptional genetic carrier testing and the commercial offer directly-to-consumers

Prof. Dr. Pascal Borry

Recently, a number of commercial companies are offering preconceptional carrier tests directly-to-consumers. This offer raises a number of concerns and issues above and beyond those encountered with preconceptional tests offered within the traditional health care setting. In order to bring some of these issues to light and to initiate dialogue on this topic, this presentation discusses the following issues: the current offer of preconceptional carrier tests through online commercial companies; the implications for the informed consent procedure and the need for good information; the need for medical supervision and follow-up; and the appropriate use of existing resources. The article concludes with some reflections about the potential sustainability of the offer of preconceptional carrier tests directly-to-consumers.

Pascal Borry is Professor of Bioethics at the Centre for Biomedical Ethics and Law, Faculty of Medicine, K.U.Leuven (Belgium). His research interests are in the areas of the ethical, legal and social aspects of genetics and genomics. His main publications focus on genetic testing and screening relevant to newborn, children, and adolescents; biobanking; direct-to-consumer genetic testing; and the relation between empirical and normative approaches in bioethics. Since 2009 he is member of the Professional and Public Policy Committee of the European Society of Human Genetics. In 2006, Pascal Borry received the triennal prize for biomedical ethics ‘Professor Roger Borghgraef’. He was a visiting scholar at the Case Western Reserve University (Cleveland, Ohio, US), Université de Montreal and McGill University and is currently an affiliated researcher at the VU University Medical Centre Amsterdam.

Background literature:

Pascal Borry, Lidewij Henneman, Phillis Lakeman, Leo P. ten Kate, Martina C. Cornel, Heidi C. Howard, Preconceptional genetic carrier testing and the commercial offer directly-to-consumers. Human Reproduction 2011 E-pub.

Venue: Holy Spirit College

Ongoing Ethical Debate on Non Heart Beating Donation in General and on Organ Donation after Euthanasia in Specific

By Prof. Dr. Paul Schotsmans

The possibility to integrate Non Heart Beating Donation as an eventual source for organ donation is at the moment largely debated and in some countries (mainly Holland) largely integrated. Many ethical issues are on the agenda: who should decide to stop therapy? What with comfort therapy? How to consider the regulations concerning the declaration of death and the no touch period? One of the specific forms of Non Heart Beating Donation has become the possibility for those who request euthanasia, also to donate their organs after the declaration of their death. The Eurotransplant Ethics Committee provided some precise guidelines for this procedure. This debate might illustrate an ethical process of clarification and policy making.    

Paul Schotsmans is professor of medical ethics, Faculty of Medicine, K.U. Leuven, and was vice-dean of the Faculty from 2005-2011. He is co-chairing the Belgian Advisory Committee on Bioethics (2010-2014). He was chair of the Eurotransplant Ethics Committee (2001-20010).

Background literature:

D. Van Raemdonck et al., Initial Experience with Transplantation of Lungs Recovered from Donors after Euthanasia, Applied Cardiopulmonary Pathophysiology 15: 38-48, 2011.

D. Ysebaert et al., Organ Procurement after Euthanasia: Belgian Experience. Transplant Proc 2009; 41: 585.

W. Weimar, M.A. Bos, J.J.V. Busschbach (Eds.), Organ Transplantation: Ethical, Legal and Psychosocial Aspects. Expanding the European Platform. Lengerich/Berlin, Pabst Science Publishers, 2011, 429 pp.

Venue: Pentalfa, Gasthuisberg

Ethical and legal aspects of pediatric clinical research

Dr. Wim Pinxten

Although Harry Shirkey reported already in 1968 that in absence of pediatric clinical research minors would be turned into ‘therapeutic orphans’, pediatric patients have been ignored in clinical research for long, and systematic efforts to encourage the inclusion of minors in clinical studies only came decades later. Today, the urgent need for pediatric clinical research in the population of minors continues to exist, even though it has been generally recognized that pediatric clinical trials are indispensible to provide minors with an equitable gamut of safe and efficacious drugs as their adult counterparts.

Because of the important differences between adults and minors, paradigms of clinical research, research ethics and research regulation that are grafted on the competent adult do not adequately respond to the specifics of pediatric clinical research. Therefore, specific attention must be paid to the ethical, legal, and social issues in pediatric clinical research.

In this lecture, challenges in the approach of ethical, legal, and social issues in pediatric clinical research will be explored and discussed.

Wim Pinxten (1977) has a background in religious studies (MA), law (BA), applied ethics (MA), and biomedical sciences (PhD). As a researcher in medical ethics and health law, he has been involved in several EC-funded projects at the International Forum for Biophilosophy and the Katholieke Universiteit Leuven. 
In 2010 he joined the department of Medical Ethics and Philosophy of Medicine of the Erasmus Medical Center as a senior research fellow.

His research interests are in the ethical, legal and social aspects of clinical research in (minor) human subjects, ageing and senescence, global justice in healthcare, sustainable healthcare, and rare diseases and orphan drugs.

Background Literature:

Wim Pinxten, Herman Nys & Kris Dierickx, Frontline ethical issues in pediatric clinical research: ethical and regulatory aspects of seven current bottlenecks in pediatric clinical research. Eur J Pediatric, Springer Verlag 2010