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This article explores whether 'digital pills' that track medication intake should be used to enhance adherence. We concentrate on psychiatric conditions since these pose unique challenges. We analyze two public policies... more
This article explores whether 'digital pills' that track medication intake should be used to enhance adherence. We concentrate on psychiatric conditions since these pose unique challenges. We analyze two public policies that potentially encourage the development of systems for remote monitoring of intake, namely the granting of patents and marketing authorization, and identify key stakeholders and their main interests so as to discuss whether these policies provide disproportionate benefits to some. The stakeholders identified are patients, system providers, drug manufacturers, insurers or healthcare systems, physicians, data users, and society at large. We discuss relevant industry reports, regulatory data, patent documents, and academic
The ethical (un)acceptability of euthanasia for severe physical suffering is undoubtedly one of the most controversial topics of our time. Perhaps even more controversial is the debate on whether euthanasia could also be justified for... more
The ethical (un)acceptability of euthanasia for severe physical suffering is undoubtedly one of the most controversial topics of our time. Perhaps even more controversial is the debate on whether euthanasia could also be justified for cases of mental suffering, which we understand as suffering without an underlying diagnosable condition or cause. Various widely debated cases from The Netherlands and Belgium have made this issue more than just a philosophical exercise. In this chapter we look into the ethical aspects of seeing mental suffering as a possibly allowable indication for euthanasia. First, we clarify the important concepts—such as ‘physical suffering’, ‘psychological suffering’, and ‘mental suffering’—that are used throughout this chapter. Next we focus on the following key question: can one consistently claim a right to request euthanasia for patients with diagnosable physical or psychological sources of suffering, while denying the same right to patients with mental suffering without medical diagnosis? We do so by identifying various reasons that could be given to justify why mental suffering is relevantly different from physical or psychological suffering. We will discuss the claims that mental suffering should be seen as special as it: (1) diminishes a person’s competence; (2) is a different type of suffering; (3) is undiagnosable; and (4) can never be proven to be incurable. We conclude with two important reasons to remain cautious about allowing euthanasia in cases of mental suffering.
In several jurisdictions, sex offenders may be offered chemical castration as an alternative to further incarceration. In some, agreement to chemical castration may be made a formal condition of parole or release. In others, refusal to... more
In several jurisdictions, sex offenders may be offered chemical castration as an alternative to further incarceration. In some, agreement to chemical castration may be made a formal condition of parole or release. In others, refusal to undergo chemical castra-tion can increase the likelihood of further incarceration though no formal link is made between the two. Offering chemical castration as an alternative to fur-ther incarceration is often said to be partially coercive, thus rendering the offender’s consent invalid. The dominant response to this objection has been to argue that any coercion present in such cases is compatible with valid consent. In this article, we take a different tack, arguing that, even if consent would not be valid, offering chemical castration will often be supported by the very considerations that underpin concerns about consent: considerations of autonomy. This is because offering chemical castration will often increase the offender’s autonomy, both at the...
In 2012, Eli Lilly, a US pharmaceutical corporation, initiated an investor-state arbitral claim against the Canadian government after the Canadian courts invalidated two of Eli Lilly's Canadian patents, claiming that the application... more
In 2012, Eli Lilly, a US pharmaceutical corporation, initiated an investor-state arbitral claim against the Canadian government after the Canadian courts invalidated two of Eli Lilly's Canadian patents, claiming that the application of the so-called ‘promise doctrine’ violates international patent law agreements. Even though this is not the first investment arbitration case in which intellectual property rights have played such a substantial role, Eli Lilly's claim against Canada illustrates an innovative attempt to employ an international investment agreement to protect IPRs, with a private actor seeking to claim compensation for the invalidation of its patents. Furthermore, it has created significant controversy over the inclusion and recognition of intellectual property rights as ‘investments’ within the scope of international investment agreements. Therefore, in this article, we examine the initial granting and revocation of Eli Lilly's patents in more detail, and discuss the critical problems arising from the possibility of private investors directly challenging domestic patent laws’ compliance with international patent agreements before international arbitral tribunals.
In this chapter we review recent developments in patent law in the US and Europe in relation to the patenting of ‘isolated’ human body materials, noting the tension in patent law between its general aspiration of promoting the (bio)... more
In this chapter we review recent developments in patent law in the US and Europe in relation to the patenting of ‘isolated’ human body materials, noting the tension in patent law between its general aspiration of promoting the (bio) economy while at the same time ring-fencing products of nature from effective monopolisation by patentees. Central to this is the proposition that patents should be granted for ‘inventions’ but not for ‘discoveries’, two symbolic terms that lack clear definitions. We find that hard law has been used in Europe to define a boundary between these categories that is industry-favourable – mere isolation transforms a discovery into an invention. By contrast, in the US, the Supreme Court has rejected this view, a view that was dominant for a century in US practice, considering that something beyond mere novelty over the natural material in its natural environment is required – some act of invention must have occurred.
Research regarding the drivers of acceptance of clinical decision support systems (CDSS) by physicians is still rather limited. The literature that does exist, however, tends to focus on problems regarding the user-friendliness of CDSS.... more
Research regarding the drivers of acceptance of clinical decision support systems (CDSS) by physicians is still rather limited. The literature that does exist, however, tends to focus on problems regarding the user-friendliness of CDSS. We have performed a thematic analysis of 24 interviews with physicians concerning specific clinical case vignettes, in order to explore their underlying opinions and attitudes regarding the introduction of CDSS in clinical practice, to allow a more in-depth analysis of factors underlying (non-)acceptance of CDSS. We identified three general themes from the results. First, ‘the perceived role of the AI’, including items referring to the tasks that may properly be assigned to the CDSS according to the respondents. Second, ‘the perceived role of the physician’, referring to the aspects of clinical practice that were seen as being fundamentally ‘human’ or non-automatable. Third, ‘concerns regarding AI’, including items referring to more general issues th...
This article explores whether 'digital pills' that track medication intake should be used to enhance adherence. We concentrate on psychiatric conditions since these pose unique challenges. We analyze two public policies that potentially... more
This article explores whether 'digital pills' that track medication intake should be used to enhance adherence. We concentrate on psychiatric conditions since these pose unique challenges. We analyze two public policies that potentially encourage the development of systems for remote monitoring of intake, namely the granting of patents and marketing authorization, and identify key stakeholders and their main interests so as to discuss whether these policies provide disproportionate benefits to some. The stakeholders identified are patients, system providers, drug manufacturers, insurers or healthcare systems, physicians, data users, and society at large. We discuss relevant industry reports, regulatory data, patent documents, and academic
... Record Details. Record ID, 1147943. Record Type, bookChapter. Author, Sigrid Sterckx [801000998147] - Ghent University Sigrid.Sterckx@UGent.be; Julian Cockbain. Chapter Title, The lack of access to medicines and the Health Impact Fund... more
... Record Details. Record ID, 1147943. Record Type, bookChapter. Author, Sigrid Sterckx [801000998147] - Ghent University Sigrid.Sterckx@UGent.be; Julian Cockbain. Chapter Title, The lack of access to medicines and the Health Impact Fund scheme. Publication Status, inpress ...
Current methods of genome editing have been steadily realising the once remote possibilities of making effective and realistic genetic changes to humans, animals and plants. To underpin this, only 6 years passed between Charpentier and... more
Current methods of genome editing have been steadily realising the once remote possibilities of making effective and realistic genetic changes to humans, animals and plants. To underpin this, only 6 years passed between Charpentier and Doudna’s 2012 CRISPR-Cas9 paper and the first confirmed (more or less) case of gene-edited humans. While the traditional legislative and regulatory approach of governments and international bodies is evolving, there is still considerable divergence, unevenness and lack of clarity. However, alongside the technical progress, innovation has also been taking place in terms of ethical guidance from the field of patenting. The rise of so-called “ethical licensing” is one such innovation, where patent holders’ control over genome editing techniques, such as CRISPR, creates a form of private governance over possible uses of gene-editing through ethical constraints built into their licensing agreements. While there are some immediately apparent advantages (epi...
Current methods of genome editing have been steadily realising the once remote possibilities of making effective and realistic genetic changes to humans, animals and plants. To underpin this, only 6 years passed between Charpentier and... more
Current methods of genome editing have been steadily realising the once remote possibilities of making effective and realistic genetic changes to humans, animals and plants. To underpin this, only 6 years passed between Charpentier and Doudna's 2012 CRISPR-Cas9 paper and the first confirmed (more or less) case of gene-edited humans. While the traditional legislative and regulatory approach of governments and international bodies is evolving, there is still considerable divergence, unevenness and lack of clarity. However, alongside the technical progress, innovation has also been taking place in terms of ethical guidance from the field of patenting. The rise of so-called "ethical licensing" is one such innovation, where patent holders' control over genome editing techniques, such as CRISPR, creates a form of private governance over possible uses of gene-editing through ethical constraints built into their licensing agreements. While there are some immediately appare...
The use of artificial intelligence (AI) in healthcare comes with opportunities but also numerous challenges. A specific challenge that remains underexplored is the lack of clear and distinct definitions of the concepts used in and/or... more
The use of artificial intelligence (AI) in healthcare comes with opportunities but also numerous challenges. A specific challenge that remains underexplored is the lack of clear and distinct definitions of the concepts used in and/or produced by these algorithms, and how their real world meaning is translated into machine language and vice versa, how their output is understood by the end user. This "semantic" black box adds to the "mathematical" black box present in many AI systems in which the underlying "reasoning" process is often opaque. In this way, whereas it is often claimed that the use of AI in medical applications will deliver "objective" information, the true relevance or meaning to the end-user is frequently obscured. This is highly problematic as AI devices are used not only for diagnostic and decision support by healthcare professionals, but also can be used to deliver information to patients, for example to create visual aids for use in shared decision-making. This paper provides an examination of the range and extent of this problem and its implications, on the basis of cases from the field of intensive care nephrology. We explore how the problematic terminology used in human communication about the detection, diagnosis, treatment, and prognosis of concepts of intensive care nephrology becomes a much more complicated affair when deployed in the form of algorithmic automation, with implications extending throughout clinical care, affecting norms and practices long considered fundamental to good clinical care.
Whether living tissue and donation by minors is acceptable is the subject of considerable debate. In view of the vulnerable position of minors, the risks involved in the medical procedure, and the possible conflict of interests on the... more
Whether living tissue and donation by minors is acceptable is the subject of considerable debate. In view of the vulnerable position of minors, the risks involved in the medical procedure, and the possible conflict of interests on the part of the parents, the legal approach in Europe has traditionally been very restrictive. However, this approach may raise concerns when a situation would arise where donation by a minor would still be in that person’s best interests. Moreover, a very restrictive approach may be difficult to reconcile with the requirement to give due weight to the views of minors in accordance with their age and maturity. In the light of these considerations, this article examines whether there is room to improve the way in which living tissue and organ donation by minors is currently regulated across Europe. We first sketch the debate about the acceptability of using minors as living donors and explore its potential clinical need. Subsequently, we assess whether inte...
ABSTRACT The inclusion of an investment chapter in the Comprehensive Economic and Trade Agreement (CETA) and the Transatlantic Trade and Investment Partnership (TTIP) has encountered significant opposition, especially in relation to... more
ABSTRACT The inclusion of an investment chapter in the Comprehensive Economic and Trade Agreement (CETA) and the Transatlantic Trade and Investment Partnership (TTIP) has encountered significant opposition, especially in relation to Investor-State Dispute Settlement (ISDS). In this context, the EU has proposed several changes to the traditional procedures, including the creation of an investment court. The need to reform ISDS has long been recognised, but the key question remains: What is required for such a dispute settlement mechanism to have legitimate authority? Drawing from insights in legal theory and political philosophy, we examine what could be adequate criteria for the normative legitimacy of ISDS. We argue that ISDS can only be minimally legitimate if there are sufficient procedural safeguards to ensure fair access to the proceedings and equal consideration of their interest for all those affected by investment tribunals’ or courts’ decisions. Furthermore, we emphasize the need to look beyond what potential beneficial and adverse consequences of ISDS are, and explain that the appointment of the judges by the state parties and the reintroduction of some control of the state parties over dispute settlement outcomes are not sufficient to guarantee the normative legitimacy of ISDS.
Advancements in the field of biotechnology have accelerated the development of drugs that are manufactured from cultures of living cells, commonly referred to as “biologics.” Due to the complexity of the production process, generic... more
Advancements in the field of biotechnology have accelerated the development of drugs that are manufactured from cultures of living cells, commonly referred to as “biologics.” Due to the complexity of the production process, generic biologics are unlikely to be chemically identical to the reference product, and accordingly are referred to as “biosimilars.”Encouraging the development of biosimilars has been presented as the key solution to decrease prices and increase access to biologics, but the development and use of biosimilars continues to raise problems, none of which can easily be addressed. Developing a biosimilar requires considerable time and financial resources, and legitimate safety concerns necessitate elaborate clinical testing of biosimilars. As a consequence, the introduction of biosimilars onto the market has not resulted in significant price reductions, and concerns regarding the substitution and interchangeability of original biologics with biosimilars persist.This a...
In 2014, the Belgian Euthanasia Law was amended so as to extend the possibility of obtaining euthanasia to minors who have the capacity for discernment. The amendment led to considerable debate among Belgian legal experts, health care... more
In 2014, the Belgian Euthanasia Law was amended so as to extend the possibility of obtaining euthanasia to minors who have the capacity for discernment. The amendment led to considerable debate among Belgian legal experts, health care professionals and ethicists, in large part due to concerns about the scope and assessment of the minor's 'capacity for discernment', a concept first introduced in Belgian medical law by the amendment. This article offers a critical legal analysis of the concept of 'capacity for discernment' and its implications for euthanasia practice in Belgium. We do so by focusing on a ruling of the Belgian Constitutional Court of 29 October 2015, where the concept figured prominently in the examination of the constitutionality of the amendment. This approach also allows us to shed light on the interpretation of several core aspects of the original 2002 Euthanasia Law and its 2014 amendment.
In the context of debates on (forensic) psychiatry issues pertaining to moral dimensions of (forensic) psychiatric health care are frequently discussed. These debates invite reflection on the question whether forensic practitioners have a... more
In the context of debates on (forensic) psychiatry issues pertaining to moral dimensions of (forensic) psychiatric health care are frequently discussed. These debates invite reflection on the question whether forensic practitioners have a role in stimulating patients' moral development and moral growth in the context of forensic psychiatric and psychological treatment and care. We conducted a qualitative study to examine to what extent forensic practitioners consider moral development and moral growth to be a part of their current professional practices and to what extent they think that stimulating moral development is a legitimate objective in the context of forensic psychiatric treatment. In addition, we asked how forensic practitioners balance pubic safety and risk management concerns with the interests and wellbeing of the individual patient. We conclude that: (i) elements of moral development and moral growth in forensic psychiatric care practices are to a certain extent i...
Research Interests:
The introduction of Web 2.0 technology, along with a population increasingly proficient in Information and Communications Technology (ICT), coupled with the rapid advancements in genetic testing methods, has seen an increase in the... more
The introduction of Web 2.0 technology, along with a population increasingly proficient in Information and Communications Technology (ICT), coupled with the rapid advancements in genetic testing methods, has seen an increase in the presence of participant-centred research initiatives. Such initiatives, aided by the centrality of ICT interconnections, and the ethos they propound seem to further embody the ideal of increasing the participatory nature of research, beyond what might be possible in non-ICT contexts alone. However, the majority of such research seems to actualise a much narrower definition of 'participation'-where it is merely the case that such research initiatives have increased contact with participants through ICT but are otherwise non-participatory in any important normative sense. Furthermore, the rhetoric of participant-centred initiatives tends to inflate this minimalist form of participation into something that it is not, i.e. something genuinely particip...
In 2013, a European Patent for the technique of time-lapse microscopy was granted by the European Patent Office (EPO) to Stanford University and was subsequently opposed by Unisense FertiliTech A/S and by the European Society for Human... more
In 2013, a European Patent for the technique of time-lapse microscopy was granted by the European Patent Office (EPO) to Stanford University and was subsequently opposed by Unisense FertiliTech A/S and by the European Society for Human Reproduction and Embryology (ESHRE), Sigrid Sterckx, Julian Cockbain and Guido Pennings. ESHRE et al.'s opposition was based on the argument that Stanford's patent was directed to a method of medical diagnosis, methods that are excluded from patentability by Article 53(c) of the European Patent Convention. The Opposition Division of the EPO rejected the oppositions in November 2015, and both opponents have now filed their appeals. In this paper, we comment on the Opposition Division decision and the grounds of appeal put forward by ESHRE et al.
Continuous sedation at the end of life is a practice that has attracted a great deal of attention. An increasing number of guidelines on the proposed correct performance of the practice have been drafted. All of the guidelines stress the... more
Continuous sedation at the end of life is a practice that has attracted a great deal of attention. An increasing number of guidelines on the proposed correct performance of the practice have been drafted. All of the guidelines stress the importance of using sedation in proportion to the severity of the patient's symptoms, thus to reduce the patient's consciousness no more than is absolutely necessary. As different patients can have different experiences of suffering, the amount of suffering should, ideally, be assessed subjectively; that is, via communication with the patient. Continuously sedated patients are often unable to communicate, however, making subjective methods of pain assessment unusable. For these patients, the degree of consciousness is the sole available measure. It therefore seems important to adequately measure how deeply the patient is sedated, thereby allowing sedation to be increased when it is too light and decreased when it is too heavy. This is in accordance with the idea that reducing consciousness is not an ethically neutral act. Although consciousness measuring techniques are a hot topic in anesthesiology, almost no research exists on the use of such techniques in the context of continuous sedation at the end of life. This article aims to review existing techniques to measure consciousness and to evaluate their applicability, efficiency, and invasiveness for patients who are continuously sedated until death. Techniques commonly used to assess the depth of sedation in continuously sedated patients are basic clinical assessment and sedation scales, as they are often considered reliable and non-invasive. These techniques might not be very reliable, however, since it is known that some patients are nonresponsive and yet aware. Moreover, sedation scales require stimulation of the patient (for example prodding, shaking, or providing painful stimuli), and can thus be considered invasive of one's bodily integrity or dignity. Other techniques, such as EEG (electroencephalography) derivatives, may score better on reliability and invasiveness. Yet these have so far never been compared to sedation scale scores for patients receiving continuous sedation at the end of life. Therefore, we conclude that, for both clinical and ethical reasons, research into the efficiency and applicability of other techniques, such as derivatives of EEG, are urgently needed.
Since the adoption of the WTO-TRIPS Agreement in 1994, there has been significant controversy over the impact of pharmaceutical patent protection on the access to medicines in the developing world. In addition to the market exclusivity... more
Since the adoption of the WTO-TRIPS Agreement in 1994, there has been significant controversy over the impact of pharmaceutical patent protection on the access to medicines in the developing world. In addition to the market exclusivity provided by patents, the pharmaceutical industry has also sought to further extend their monopolies by advocating the need for additional 'regulatory' protection for new medicines, known as data exclusivity. Data exclusivity limits the use of clinical trial data that need to be submitted to the regulatory authorities before a new drug can enter the market. For a specified period, generic competitors cannot apply for regulatory approval for equivalent drugs relying on the originator's data. As a consequence, data exclusivity lengthens the monopoly for the original drug, impairing the availability of generic drugs. This article illustrates how the pharmaceutical industry has convinced the US and the EU to impose data exclusivity on their tra...
Continuous sedation at the end of life is an end-of-life practice that has gained considerable attention in the international literature. Nevertheless, significant confusion persists, even on how to label or define the practice. Several... more
Continuous sedation at the end of life is an end-of-life practice that has gained considerable attention in the international literature. Nevertheless, significant confusion persists, even on how to label or define the practice. Several different terms and definitions exist, and these are often non-neutral and indicative of one's normative position on sedation at the end of life. This is problematic for two reasons. First, the use of such value-laden terms or definitions of continuous sedation may make it difficult, if not impossible, to agree on the facts surrounding continuous sedation. Second, including normative criteria in a definition can lead one to make disguised circular or tautological statements. This paper identifies commonly used terms and definitions and demonstrates how particular elements present in these are value-laden and can influence the ethical evaluation of continuous sedation at the end of life. Two commonly used terms, 'palliative sedation' and 'terminal sedation', have been strongly criticized. We propose to use another, more descriptive term, namely 'continuous sedation at the end of life'. As regards the different definitions of sedation, some are general, but most contain very specific elements, thereby clearly limiting the number of cases that are covered by the definition. Some definitions of sedation include the intention one should (not) have, the possible indications for the practice, and the type of patients the practice should be reserved for. Including value-laden elements in the very definition of a clinical practice runs the risk of pre-empting a proper normative debate about the practice. We explain why this is the case and why it is problematic, and we propose an alternative, descriptive, definition that seeks to avoid these problems.
An 'Information Centre' has recently been established by law which has the power to collect, collate and provide access to the medical information for all patients treated by the National Health Service in England, whether in... more
An 'Information Centre' has recently been established by law which has the power to collect, collate and provide access to the medical information for all patients treated by the National Health Service in England, whether in hospitals or by General Practitioners. This so-called 'care.data' scheme has given rise to major and ongoing controversies. We will sketch the background of the scheme and look at the responses it has elicited from citizens and medical professionals. In Autumn 2013, NHS England set up a care.data website where citizens could record their concerns regarding the collection of health-related data by the Information Centre. We have reviewed all the comments on this website up until June 2015. We have also analysed the readers' comments on the coverage of the care.data scheme in one of the main national UK newspapers. When discussing the responses of citizens, we will make a distinction between the problems that citizens detect and the solutions ...
Research Interests:
The capabilities approach of Amartya Sen and Martha Nussbaum has become an influential viewpoint for addressing issues of social justice and human development. It has not yet, however, given adequate theoretical consideration to the... more
The capabilities approach of Amartya Sen and Martha Nussbaum has become an influential viewpoint for addressing issues of social justice and human development. It has not yet, however, given adequate theoretical consideration to the requirements of environmental sustainability. Sen has focussed on the instrumental importance of human development for achieving sustainability, but has failed to consider the limits of this account, especially with respect to consumption-reduction. Nussbaum has criticised constraining material consumption for its paternalistic prescription of one particular conception of the good life, without considering it as an imperative of justice. We discuss two possible extensions of the capabilities approach. First, the concept of capability ceilings contains several attractive elements, but it also suffers from some shortcomings. Therefore, second, we advocate constraining people's combinations of functionings in accordance with a personal budget which cons...
Editor – We thank Schildman and colleagues for their comments regarding our study of continuous sedation (CS) in end-of-life care. We agree that more work needs to be done in the development of high-quality international guidance to aid... more
Editor – We thank Schildman and colleagues for their comments regarding our study of continuous sedation (CS) in end-of-life care. We agree that more work needs to be done in the development of high-quality international guidance to aid sound clinical decision-making and also concur with their observations that guidelines alone are insufficient: too much emphasis on guidelines risks encouraging routinisation and obscuring the vital importance of case by case-based consideration of decisions about CS and the need for clinical staff to have the necessary time and repeated opportunities to refine this area of their practice. The role of nurses is often neglected, yet they have been shown to suffer emotional and moral distress in CS practice.1 It is interesting to note, in line with the observation of Schildman et al., that a Dutch study of the general public suggests that there are likely to be some individuals who express a preference to end their life at one point in time without any compromise to their level of consciousness.2 Research by Steinhauser et al.3 also suggests that not all patients associate deep ‘sleep’ with a good death. We agree with Schildman and colleagues that decisions regarding the initiation of CS need to be clearly distinguished from decisions regarding clinically assisted nutrition and hydration (CANH). Justifying the withholding or withdrawing of CANH on the basis of the argument that, since the patient is no longer conscious, CANH is ‘futile’, fails to make the necessary distinction between the two decisions and is a misuse of the concept of futility.4 Yours sincerely
In this article, the question is addressed as to whether European patent law discriminates against medical devices and in favor of pharmaceuticals, and, if so, whether such discrimination is unfair to the medical devices sector. Three... more
In this article, the question is addressed as to whether European patent law discriminates against medical devices and in favor of pharmaceuticals, and, if so, whether such discrimination is unfair to the medical devices sector. Three forms of discrimination are identified: the availability of Supplementary Protection Certificates for pharmaceuticals; the allowance of first medical indication claims for pharmaceuticals; and the allowance of second and further medical indication claims for pharmaceuticals, now enshrined in the most recent version of the European Patent Convention. The first two forms of discrimination are found to be arguably justifiable, whereas the third is not.
Should sport revolve around natural talent or should athletes be allowed to enhance their bodies with biotech? As many commentators have noted, it seems that the contemporary doping debate is in urgent need of more in-depth investigations... more
Should sport revolve around natural talent or should athletes be allowed to enhance their bodies with biotech? As many commentators have noted, it seems that the contemporary doping debate is in urgent need of more in-depth investigations of these issues. Ultimately, the most vexing problems posed by doping do not seem to be about health or fair play – although doping clearly does pose momentous problems on those fronts too. But if some forms of doping would be made available in an adequately healthy and fair way, they would probably still cause much concern – concern about doping itself would persist, no matter how much its circumstances would be tidied up.

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Hippocrates famously advised doctors 'it is far more important to know what person the disease has than what disease the person has'. Yet 2,500 years later, 'personalised medicine', based on individual genetic profiling and the... more
Hippocrates famously advised doctors 'it is far more important to know what person the disease has than what disease the person has'. Yet 2,500 years later, 'personalised medicine', based on individual genetic profiling and the achievements of genomic research, claims to be revolutionary. In this book, experts from a wide range of disciplines critically examine this claim. They expand the discussion of personalised medicine beyond its usual scope to include many other highly topical issues, including: human nuclear genome transfer ('three-parent IVF'), stem cell-derived gametes, private umbilical cord blood banking, international trade in human organs, biobanks such as the US Precision Medicine Initiative, direct-to-consumer genetic testing, health and fitness self-monitoring. The authors question whether personalised medicine actually threatens the common good.
Research Interests:
(In T. Potthast & S. Meisch (eds). Climate change and sustainable development: Ethical perspectives on land use and food production (pp. 55-60). Wageningen: Wageningen Academic Publishers. ISBN: 978-90-8686-197-2.) Humanity’s current... more
(In T. Potthast & S. Meisch (eds). Climate change and sustainable development: Ethical perspectives on land use and food production (pp. 55-60). Wageningen: Wageningen Academic Publishers. ISBN: 978-90-8686-197-2.)
Humanity’s current consumption patterns threaten the lives of current as well as future people. This provides a strong moral imperative to take the material constraints of the environment as the point of departure for an account of sustainable distributive justice. This ecological space paradigm should focus on a multidimensional, non-aggregative conception of carrying capacity. However, because resources are merely instrumental in pursuing various ends, we suggest combining capabilities and ecological space as the currency of distributive justice. As regards scope, this integrative account has the major advantage of combining the strength of the capabilities approach regarding global justice with the focus of the ecological space paradigm on intertemporal justice. The pattern of distribution should then take the form of distributing material resources so as to enable everyone to reach the capability threshold, while the leftover ecological space should be distributed on an equal per capita basis.
(In T. Potthast & S. Meisch (eds). Climate change and sustainable development: Ethical perspectives on land use and food production (pp. 121-127). Wageningen: Wageningen Academic Publishers. ISBN: 978-90-8686-197-2.) Climate Change has... more
(In T. Potthast & S. Meisch (eds). Climate change and sustainable development: Ethical perspectives on land use and food production (pp. 121-127). Wageningen: Wageningen Academic Publishers. ISBN: 978-90-8686-197-2.)
Climate Change has made us aware of the finite absorptive capacity of the atmosphere. Moreover, a fifth of the emissions that overstep our earth’s boundaries result from meat and dairy consumption, which is estimated to double by 2050. In this paper we question whether an equal per capita (EPC) allocation of emission entitlements, and Contraction and Convergence (C&C) approach that is derived from the EPC model, meets the demands of distributive and participatory justice. We first explain that the EPC ignores historical responsibility for the problem and prefers the use of a benchmark emissions year on the basis of which emissions are measured and entitlements are distributed. We argue that the use of a benchmark favours the largest culprits and harms the development of non-industrialized nations. Nevertheless, whilst advocating the inclusion of historical responsibility, we refrain from promoting negative allocations, for this would violate premises of egalitarian moral theory. Furthermore, the EPC model ignores existing geographical and interpersonal differences that seem to require a differentiated allocation, for it disregards the moral difference between subsistence and luxury emissions. It thus centres on the means instead of the ends of energy use. Moreover, we observe that the equal allocation proposal isolates goods, and argue that theories of justice relate to ‘packages of goods’, rather than to separate goods. Finally, we question whether the EPC scheme meets the requirements of participatory justice. The proponents of an equal allocation assume the state to be the aggregate rights bearer, yet in our view such an assumption implies certain potentially harmful generalisations. With regard to the responsibility-based efforts that nations should undertake, we propose to differentiate between groups within nations so as to enhance the participatory justice of bearing responsibility for the problem.
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(In O. Lessmann, F. Rauschmayer (eds). The capability approach and sustainability (57-75). New York: Routledge. ISBN: 978-0-415-71253-8. [Reprinted from Journal of Human Development and Capabilities, 14 (1): 58-76]. ) Abating the threat... more
(In O. Lessmann, F. Rauschmayer (eds). The capability approach and sustainability (57-75). New York: Routledge. ISBN: 978-0-415-71253-8. [Reprinted from Journal of Human Development and Capabilities, 14 (1): 58-76]. )
Abating the threat climate change poses to the lives of future people clearly challenges our development models. The 2011 Human Development Report rightly focuses on the integral links between sustainability and equity. However, the human development and capabilities approach emphasizes the expansion of people’s capabilities simpliciter, which is questionable in view of environmental sustainability. We argue that capabilities should be defined as triadic relations between an agent, constraints and possible functionings. This triadic syntax particularly applies to climate change: since people’s lives and capabilities are dependent on the environment, sustainable human development should also include constraining human activities in order to prevent losses in future people’s well-being due to the adverse effects of exacerbated climate change. On this basis, we will advocate that the goals of sustainable human development should be informed by a framework that consists of enhancing capabilities up to a threshold level, as well as constraining the functionings beyond this threshold in terms of their greenhouse gas emissions.
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(in D. McBain (ed.). Power, justice and citizenship: The relationships of power, pp. 123-133) According to Samuel Scheffler, a conflict exists between distributive justice and individual responsibility. At the heart of this debate lies... more
(in D. McBain (ed.). Power, justice and citizenship: The relationships of power, pp. 123-133)
According to Samuel Scheffler, a conflict exists between distributive justice and individual responsibility. At the heart of this debate lies the common-sense moral concept of ‘special responsibilities,’ i.e. responsibilities we only have to people with whom we have significant personal ties. For example, membership of the same community is often said to entail this kind of responsibility. However, this conception of individual responsibility is under attack from two different directions. On the one hand, according to the voluntarist objection, special responsibilities may constitute significant burdens for their bearers and hence, cannot be imposed on people without their consent or voluntary choice. The distributive objection on the other hand, claims that the common-sense moral conception of responsibility is overly limited in scope, and that it cannot be a sufficient guide for moral conduct, given the challenges we are facing in a globalised world (such as climate change, persistent poverty and rapid resource depletion). We will take the non-reductionist claim as the point of departure for our analysis. According to this claim, genuine special responsibilities are based upon relationships that one has reason to value, irrespective of whether or not these relationships are actually valued. Although non-reductionists defend special responsibilities against the voluntarist objection on this basis, we will argue that a sound conception of the reasons to value certain relationships can widen rather than restrict the scope of individual responsibility, thus meeting the distributive challenge as well. More specifically, we will examine which conditions might provide sufficient reasons to value relationships. We will conclude that such an account can widen the scope of special responsibilities to include the whole of mankind and shall defend a conception of global citizenship and cosmopolitanism.
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(in D. McBain (ed.). Power, justice and citizenship: The relationships of power, pp. 3-17) Although an appeal to human moral agency can motivate us to shoulder responsibility for our normative conduct, its phenomenological features have... more
(in D. McBain (ed.). Power, justice and citizenship: The relationships of power, pp. 3-17)
Although an appeal to human moral agency can motivate us to shoulder responsibility for our normative conduct, its phenomenological features have also been invoked to support certain restrictions on individual responsibility imposed by common-sense morality. Indeed, global dynamics such as climate change generate doubts about our practice of regarding the individual as the locus of responsibility, since, as noted by Samuel Scheffler, we tend to experience acts as having primacy over omissions, near effects as having primacy over remote effects, and individual effects as having primacy over group effects. At first sight, these phenomenological features of agency might appear to justify absolving the individual of her responsibility, but we will argue that in fact they can neither support nor justify a restrictive conception of individual responsibility. Individuals are agents with causal powers on the global level and therefore they can properly be held responsible for the harm their actions cause – however mediated the causal connection may be. In contrast to Scheffler, we will argue that the doubts about individual responsibility on the global level are generated by the context that gives rise to the so-called common-sense morality in which the vested interests of those who have a great deal to gain from a restrictive conception of responsibility and a great deal to lose from coming to see the global context as morally salient, are dominant. This context is shaped by a particular interpretation of the liberal political assumptions, which emphasises individual freedom and holds that the role of social and political institutions is to discharge as many responsibilities for citizens as possible.
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(In G. Collste & L. Reuter (eds). Proceedings from the 50th Societas Ethica Annual Conference 2013. Climate change, sustainability, and an ethics of an open future (pp. 63-78). Linköping: Linköping University Press. ISBN:... more
(In G. Collste & L. Reuter (eds). Proceedings from the 50th Societas Ethica Annual Conference 2013. Climate change, sustainability, and an ethics of an open future (pp. 63-78). Linköping: Linköping University Press. ISBN: 978-91-7519-289-5.) This paper focuses on the diversified climate action the international community is currently witnessing. Besides examining possible reasons for the failure of the top-down approach to effectively halt rising emission levels, the development of bottom-up initiatives is discussed. In addition, this paper evaluates the European Union’s emissions trading system (EU ETS) according to two criteria of justice, with a special focus on two characteristics of the EU ETS: grandfathering and offsetting. The final section of this paper addresses the rise of emissions trading systems and considers the claims made by prominent commentators who believe emissions trading to be inherently unethical. The paper concludes, first, that whether emissions trading is morally reprehensible depends on its design and, second, that the EU ETS fails to respect justice-based criteria and points to the unwillingness of EU leaders to mend a flawed climate policy tool.
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Are you or have you been a customer of 23andMe? We would love to hear what you got out of their test, and what you think about how they use your data. We would be grateful if you would be willing to answer a few questions - this would... more
Are you or have you been a customer of 23andMe? We would love to hear what you got out of their test, and what you think about how they use your data. We would be grateful if you would be willing to answer a few questions - this would take about 5-10 minutes and your answers will only be used anonymously for academic research. The research team will not be able to know who you are.

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We are a group of university researchers with no connection to 23andMe and are interested in your views purely for research purposes. By participating, you will help us understand how 23andMe customers react to the company’s business strategies.

By filling in the survey you consent to these terms. If you have any questions about our research, please contact either of the research team leaders: Prof. Aviad Raz (Department of Sociology and Anthropology, Ben Gurion University, Beersheva, Israel. email: aviadraz@bgu.ac.il); and Prof. Barbara Prainsack (Department of Global Health & Social Medicine, King's College London, London WC2R 2LS, UK. email: barbara.prainsack@kcl.ac.uk).

Collaborators: Professor Sigrid Sterckx, Department of Philosophy and Moral Sciences, Faculty of Arts and Philosophy, Ghent University, Belgium; Dr Julian Cockbain, Bioethics Institute Ghent, Belgium; Dr Heidi C. Howard, Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
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We seek to clarify and assess the underlying moral reasons for opposing all medically unnecessary genital cutting of female minors, no matter how severe. We find that within a Western medicolegal framework, these reasons are compelling.... more
We seek to clarify and assess the underlying moral reasons for opposing all medically unnecessary genital cutting of female minors, no matter how severe. We find that within a Western medicolegal framework, these reasons are compelling. However, they do not only apply to female minors, but rather to non-consenting persons of any age irrespective of sex or gender. Keeping our focus exclusively on a Western context for the purposes of this article, we argue as follows: Under most conditions, cutting any person’s genitals without their informed consent is a serious violation of their right to bodily integrity. As such, it is morally impermissible unless the person is non-autonomous (incapable of consent) and the cutting is medically necessary.