Legal imperialism in the regulation of stem cell research and therapy: the problem of extraterritorial jurisdiction

Co-authored w. Daniela Cutas. To be published in: Capps B & Campbell AV (eds.). Bioethics and the Global Politics of Stem Cell Science: Medical Applications in a Pluralistic World. Singapore & London: World Scientific & Imperial College Press, forthcoming.

We explore the ethical implications of restricting researchers’, patients’ and clinicians’ activities in the field of stem cell science, either by not allowing them to engage in it wherever they are in virtue of their citizenship, or by restricting it everywhere altogether regardless of the ethical disagreements surrounding this issue.

Ethical Issues in Forensic Psychiatric Research on Mentally Disordered Offenders

Co-authored w. Susanna Radovic & Henrik Anckarsäter. Accepted by Bioethics, forthcoming in no. 1, 2010.

This paper analyses ethical issues in forensic psychiatric research on mentally disordered offenders, especially those detained in the psychiatric treatment system. The idea of a ‘dual role’ dilemma afflicting forensic psychiatry is more complicated than acknowledged. Our suggestion acknowledges the good of criminal law and crime prevention as a part that should be balanced against familiar research ethical considerations. Risks of research subjects being burdened by improvements of criminal justice due to research should not be seen as weighty reasons. Direct substantial risks must be balanced by health benefits, and  normal informed consent requirements apply. When direct risks are slight, as in register-based epidemiology, lack of consent may be counter-balanced by special measures to protect integrity and the general benefit of better understanding of treatment and prevention. Special requirements on consent procedures in the forensic psychiatric context are suggested, and the issue of the relation between decision competence and legal accountability is found to be in need of further study. The major ethical hazard in forensic psychiatric research connects to the role of researchers as assessors and consultants in a society entertaining strong prejudices against mentally disordered offenders.

Keywords: dual role dilemma, ethics, forensic psychiatry, informed consent, mentally disordered offenders, public good, research ethics

Tillräkneligheten, etiken och det goda samhället (Legal accountability, ethics and the good society)

Published in Radovic, S & Anckarsäter, H (eds.). Tillräknelighet. Lund 2009: Studentlitteratur.

The precarious practice of risk assessment in forensic psychiatry

Co-authored w. Nilsson T, Gustavson C, Forsman A & Anckarsäter, H. International Journal of Law and Psychiatry, 32, DOI: 10.1016/j.ijlp.2009.09.010

The development of forensic psychiatric risk assessments is discussed from a clinical point of view using the example of Sweden. A central task in forensic psychiatry has traditionally been to identify dangerous, mentally disordered subjects considered to be prone to commit violent acts. Over time, “dangerousness” has been reworded into “risk”. Nevertheless, such assessments have generally been based on the psychiatric factors characterising the individual patient, while group interaction, situational factors, or social and cultural circumstances, such as the availability of alcohol and drugs, have been largely overlooked. That risk assessments have a focused on people with a diagnosis of “mental disorder” and been used as grounds for coercive measures and integrity violations has somehow been accepted as a matter of course in the public and political debate. Even the basic question whether offenders with a mental disorder are really more prone to criminal recidivism than other offenders seems to have been treated light-handedly and dealt with merely by epidemiological comparisons between groups of persons with broad ranges of psychosocial vulnerability and the general population. Legal texts, instructions and guidelines from the authorities in charge are often vague and general, while actors in the judicial system seem to put their trust in psychiatric opinions. The exchange of professional opinions, general public expectations, and judicial decision processes poses a huge risk for misunderstandings based on divergent expectations and uses of terminology.

Shared decision-making and patient autonomy

Co-authored w. Lars Sandman. Published in Theoretical Medicine and Bioethics, 30 ( 4 ): 289-310

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice.

Shared Decision making, Paternalism and Patient Choice

Co-authored w. Lars Sandman, final version published in Health Care Analysis, 2009, 17, DOI: 10.1007/s10728-008-0108-6

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of SDM are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship

The Goals of Public Health: An Integrated, Multidimensional Model

Public Health Ethics, 2008, 1 (1) p. 39-52

While promoting population health has been the classic goal of public health practice and policy, in recent decades, new objectives in terms of autonomy and equality have been introduced. These different goals are analysed, and it is demonstrated how they may conflict severly in several ways, leaving serious unclarities both regarding the normative issue of what goal should be pursued by public health, what that implies in practical terms, and the descriptive issue of what goal that actually is pursued in different contexts. A basic conflict of perspective is handled by integrating the ideas of public health striving for health-related autonomy and equality, resulting in a prioritarian oriented population approach to health-related autonomy. This integrated goal is demonstrated to constrain itself in several ways attractive from the point of view of the classic goal, but several serious problems remain. For this reason, a model where all of the three goals are integrated into one coherent structure where they can be assigned varying degrees of importance relative to the level of population health is described. It is argued that this model avoids the problems set out earlier, and is actually normatively preferable to the classic goal alone. It is furthermore argued that the model may be employed as a useful tool for descriptive ethics, as well as a vehicle for international harmonisation of public health policies. A number of practical implications regarding, e.g., the importance of respecting autonomy and the allocation of public health resources are noted, as are a battery of questions for further research.

Screening: Ethical Aspects

Co-authored with Niklas Juth. Published in: Ashcroft, R, Dawson, A, Draper, H & McMillan 2007 (eds.), Principles of Health Care Ethics, 2nd Edition, Chichester: John Wiley & Sons

This chapter contains sections titled:

    * Introduction
    * What is Screening?
    * Why Screening?
    * Screening - What and When?
    * Screening - How?
    * Conclusions
    * Acknowledgement
    * References

KEYWORDS

ethics of screening; health care goal autonomy; testing method safety; prenatal screening and neonatal screening; ethical defensibility of screening programme

Preimplantation Genetic Diagnosis: Ethical Aspects

In: Encyclopedia of Life Sciences. Chichester, UK 2007: John Wiley & Sons.

In preimplantation genetic diagnosis, genetic traits of embryos are detected before the initiation of pregnancy. Although tampering with embryos is morally controversial, this procedure may seem to reduce ethical problems in prenatal diagnosis by offering the possibility of selecting offspring, on the basis of genetic information, more efficiently and without any need to consider abortion. However, counseling of patients becomes more complicated, and the procedure may seem to make the outside influence of their decisions easier to both achieve and justify. As a consequence, preimplantation genetic diagnosis raises concerns about the connection between the preselection of children on genetic grounds and the discrimination of disabled people. Moreover, it introduces the new ethical problem of whether or not the selection of future children on the basis of nonpathological traits should be acceptable practice.

A qualitative study of organizational background and developments at cancer genetic centres in Sweden

Co-authored w. Annika Baan & Lilian Axelsson. Published in: European Journal of Cancer Supplements, 2007, 5 (4): 440

Naturalist Farewells to Philosophy: A Note

In: Kvantifikator för en Dag: Essays Dedicated to Dag Westerståhl on his Sixtieth Birthday, Göteborg 2006: Philosophical Communications: Web Series, Department of Philosophy, University of Gothenburg.

A recurring theme in philosophy is the suggestion that there are philosophical reasons to stop doing philosophy. This general idea is briefly sketched with regard to its various versions, other reasons to abandon philosophy, proposals regarding revisions of philosophy and possible paradoxical implications. Three uniting sub-themes of otherwise very different suggestions on what is the alleged reason to abandon philosophy are discerned. Of these, implied ideas of what philosophy is are subjected to some brief critical comments in connection to peculiar naturalist versions of the farewell to philosophy theme.

Ethical Aspects of Controlling Genetic Doping

In: Tamburrini CM & Tännsjö T (2005), Genetic Technology and Sport - Ethical Questions, London: Routledge

The IOC and WADA have announced their ambition to develop control program in order to detect athletes' illegitimate use of genetic technology for enhancing performance. Although it is far from clear what such uses should be counted as illegitimate, as well as to what extent the idea of control programs for such things is a feasible idea, I will assume that such programs will concern so-called somatic genetic modifications that aims at altering the athlete's initial bodily biochemistry in a way (...) that may enhance performance without the presence of any medical reason for undertaking such modifications. This means that the envisioned control-program will have to make use of the method of genetic testing in order to detect the possible presence (or non-presence) of various genetic variants within the athlete. As a consequence of this, several ethical issues familiar within the field of genetic testing for health purposes are suddenly actualised within the area of doping control. These issues concern primarily how to handle and communicate the information about the athlete that is uncovered by such testing. However, due to the ways in which gene doping may be performed, in the case of atheletic control programs, issues of medical safety and the question of what hardships it is reasonable to require of athletes to endure also become paramount. As a consequence, one may ask whether or not sporting ethics will have to consider applying the rule of informed consent in connection to testing programs of the kind here discussed

On the Relation Between Metaethical and Substantial Normative Forms of Moral Relativism

In: Westerståhl & Tännsjö (eds.) 2005, Lectures on Relativism, Göteborg: Dept. of Philosophy, University of Gothenburg

Are Compulsory Immunisation and Incentives to Immunise Effective Ways to Achieve Herd Immunity in Europe?

Co-authored with: Moran NE, Shickle D, Dierickx K, Petrini C, Piribauer F, Czabanowska K, Cowley H, Blancafort S, Petsetakis E. Published in: Selgelid M & Battin M 2006 (eds.), Ethics and Infectious Disease, London: Blackwell.

Preimplantation Genetic Diagnosis: Ethical Aspects

In: Nature Encyclopedia of the Human Genome, London 2003: Nature Publishing Group

Review of Mats G. Hansson's (red.), The Use of Human Biobanks. Ethical, Social, Economical, and Legal Aspects

Journal of Medical Ethics 2003, 29 (2): 123

Reply to Miah: Prospects and Tensions in the Meeting of Bioethics and the Philosophy of Sports

In: Miah, A. & Eassom, S.B. (eds.) 2002, Sport Technology: History, Philosophy, Policy, Amsterdam, Boston, London, New York, Oxford, Paris, San Diego, San fransisco, Singapore, Sydney & Tokyo 2002: JAI/Elsevier Science

Genetic population screening--an ethical dilemma (in Swedish)

Lakartidningen (Journal of the Swedish Medical Association). 2002 Apr 25;99(17):1918-9

Proposal for ethical guidelines concerning preimplantation genetic diagnosis (in Swedish)

Lakartidningen (Journal of the Swedsih Medical Association). 2002 Mar 19;99(14):1568-73

Divisibility and the Moral Status of Embryos

Final version published in Bioethics 2001, 15 (5/6): 382-397. D.O.I.: 10.1111/1467-8519.00249 Online access: http://www3.interscience.wiley.com/journal/118982814/abstract

The phenomenon of twinning in early fetal development has become a popular source for doubt regarding the ascription of moral status to early embryos. In this paper, the possible moral basis for such a line of reasoning is critically analysed with sceptical results. Three different versions of the argument from twinning are considered, all of which are found to rest on confusions between the actual division of embryos involved in twinning and the property of early embryos to be divisible, to be based on highly questionable ethical assumptions, or to imply inconsistent claims regarding the moral importance of potentiality and/or the moral status of embryos. This is taken to expose a number of related inconsistencies in the moral basis of pro-life positions. In particular, ascribing moral significance to the property of being (in)divisible is found to be incompatible with the claim that human individuals possess unique values which could underpin an absolute moral ban on murder.

Selected Champions: Making Winners in the Age of Genetic Technology

In: Tamburrini, C M & Tännsjö, T (eds.) 2000, Values in Sport: Elitism, Nationalism, Gender Equality and the Scientific manufacture of Winners, London & New York: E & FN SPON. (Reprinted in: William J. Morgan (Ed.): Ethics in Sport. 2nd ed.. p. 273-284. Champaign, Illinois: Human Kinetics Publishers.)

One of the most lively current controversies within sports concerns those interventions with the human body (and mind) that are acceptable in a 'fair competition' and those that are not so acceptable. On the philosophical level, this issue actualises the more basic query regarding the underlying criteria for demarcation between acceptable and unacceptable interventions. Traditionally, the controversies in this field have regarded intake of achievement-enhancing substances (some, like water, are allowed; others, like steroids, are prohibited and yet others, like transfusion of one's own blood from a period of 'top shape', are controversial), but also peculiar forms of 'designed environment' in training (such as the 'low oxygen, low airpressure' house made so famous by the Norwegian cross-country skier Björn Dählie). In this paper I will take the discussion at least one step beyond these issues and consider the prospect of using various forms of gene technology in the making of winners in elite sports. The second section of the chapter describes various oportunities to use gene technology in sports. As will be evident, genetic interventions may proceed in very different ways, and it is not obvious that they can all be treated alike in the context of sports. In the third section, I discuss to what extent ideals and values within sports used to back up reasons for prohibiting doping may also be a basis for rejecting genetic interventions. My conclusion, summed up the last section, is that this may be plausible regarding some interventions, but not by a long way is it plausible regarding them all. In fact, genetic interventions in order to enhance athletic achievement in many ways seem to promote important values within sports! Moreover, even for those interventions which in theory may be classified as analogous to doping, in practice it will often be impossible to check whether or not an athlete has made use of them.

Recherche médicale contrôlée ou procédés médicaux de routine? Considérations éthiques et politiques pour une ligne de conduite

In: Proellochs, P & Schultess, D (eds), Ya-t-il des limites éthiques à la recherche scientifique?, Genève 2000: Editions Médecine & Hygiène

Review of Lennart Nordenfeldt's 'Talking about Health'

Theoria 2000, no. 3, vol. 66, pp. 293-98

The Morality of Interference

Theoria, 1999, 65 (1): 55-69.

This paper is about the idea of a moral distinction between doing harm and allowing harm to occurr. It discusses, and developes a general argument against, the version of the distinction often described as counterfactual, which I characterize in terms of making a moral difference between different ways of causing harm (in contrast to, e.g., the version famously discussed by Jonathan Bennett). The gist of the argument is that all variants of this version of the doing-allowing idea would have to make factors out of the agent's control into wrong-making characteristics and that, therefore, this version violates a plausible extension of the principle that 'ought' implies 'can'.

Genetic Treatment and Preselection. Ethical Differences and Similarities

In: Nordgren, A (ed.), Gene Therapy and Ethics, Studies in Bioethics and Research Ethics No. 4, Uppsala 1999: Acta Universitatis Upsaliensis.

Medical genetic interventions can be performed in two ways. First, genetic defects may be repaired (gene therapy). Secondly, a possible future individual (an embryo or a possible combination of gametes) may be preselected because of its favourable genetic make-up (by using genetic diagnostic methods and procedures from reproductive medicine ­ so called Preimplantation Genetic Diagnosis). The first kind of intervention means that someone gets medical treatment in the normal sense, however, the second kind does not. Rather, in that case, the potential patient is exchanged for another individual who is in no need of treatment. The paper explores to what extent arguments for and against these kinds of genetic intervention apply equally to all of them. For example, may the benefits that can be achieved through gene therapy be equally well achieved through genetic preselection?  Are fears of a resurrection of eugenic practices through gene technology more warranted regarding therapeutic interventions than regarding preselective ones (or vice versa)? Since genetic preselection is an intervention at the germ-line level and is presently clinically applied: How is it possible to motivate that clinical application of germ-line gene therapy is not similarily permitted?

Ethical Aspects of Risk Decisions

In: Novakova (ed.), Amalgam and Health - New Perspectives on Risks, FRN Report 99:1, Stockholm 1999: Swedish Council for Planning and Coordination of Research

On Choosing Children

In: Kampits, P, Kokai, K & Weiberg, A (eds.), Applied Ethics. Papers of the 21st International Wittgenstein Symposium, vol. 2, Kirchberg am Wechsel 1998: Austrian Ludwig Wittgenstein Society.

The Argument from Transfer

Final version published in Bioethics 1996, 10 (1): 27-42.

Utilitarian arguments on bioethical issues regarding human reproduction typically start with the view that it is wrong, other things being equal, not to procreate when this would have resulted in an additional being with a life worth living. The paper takes this view for granted and examines the common utilitarian claim that overpopulation and destitution in the world mean that, in practice, this obligation to procreate, other things being equal, often turns into a (categorical) obligation not to procreate. A version of this argument is defended - a version called the argument from transfer - according to which, rather than having additional children and care for them in order to make them happy, many people in the West ought to abstain from procreation and take care of destitute children already existing. The reasoning leading up to this conclusion raises some philosophical questions, seldom discussed in connection with bioethics, which indicate that the argument from transfer, although supporting the claim above, cannot neutralise the obligation to create more happy people as easily as assumed by utilitarians. It is argued that the argument from transfer may place many people facing the choice of procreation in a peculiar moral dilemma.

The Morality of Scientific Openness

co-authored w. Stellan Welin. Science and Engineering Ethics, 1996, 2 (4): 411-428. (Reprinted in Junker, K & Ott, K 1998 (eds.), Science and the public. More than just 'doing what's right': Ethics and science, London 1998: The Open University).

The ideal of scientific openness - i.e. the idea that scientific information should be freely accessible to interested parties - is strongly supported throughout the scientific community. At the same time, however, this ideal does not appear to be absolute in the everyday practice of science. In order to get the credit for new scientific advances, scientists often keep information to themselves. Also, it is common practice to withhold information obtained in commissioned research when the scientist has agreed with his or her employer to do so. The secrecy may be intended for ever, as in the military area, but also temporarily until a patent application has been made. The paper explores to what extent such secrecy is undesirable, as seems to be suggested by the ideal of scientific openness. Should this ideal be interpreted as having certain exceptions which make the above-mentioned practices acceptable? Are there, on closer inspection, good arguments for the ideal of scientific openness, and for officially upholding it? Possible versions of the ideal of scientific openness is explored and the issue is found to be rather complex, allowing for wide variations depending on the acting parties, beneficiaries, types of information and moral requirements involved. The case is made that the arguments usually given in favor of this ideal are weaker than what seems to be generally believed, and that, on closer inspection, they leave plenty of room for exceptions to it. These exceptions only partly cover the actual practice of withholding scientific information, and there may still be good reason to advocate, teach and enforce the ideal of scientific openness within the scientific community.

Key words: scientific information, scientific openness, scientific secrecy, research ethics, ethics of science, science policy.

Abortion: From Ethics to Politics

EAGO Newsletter, vol. 2, no. 2, 1996, pp. 25-28

Die Frage der Lagerung von hochgradig radioaktivem Müll in Schweden

in: Zilleßen, Dienel & Strubelt (red.), Die Modernisierung der Demokratie: Internationale Ansätze, Darmstadt: Westdeutcher Verlag, pp. 121-134.