Worst case bioethics



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Synthetic Biology: What can be learned from Worst Case Scenarios?

Grunwald, Armin

armin.grunwald@kit.edu
The career of new and emerging science and technology (NEST) in scientific, political and public debates is related with a specific type of techno-visionary communication as has been pointed out by several STS researchers, ethicists and technology assessment practitioners at the occasion of nanotechnology and human enhancement technologies. Synthetic Biology is in some respect a similar case: high potentials and expectations but also far-ranging fears and concerns, a very early stage of development, lack of knowledge about future developments, applications and their impacts and consequences as well, high interest of civil society organisations and of funding agencies.

Many fears and concerns are already considered, partly reminding to the GMO debate and addressing issues such as bio-safety and bio-security. It is still unclear whether there might be completely new (possible) risks. It seems that arguments and positions of the ‘Playing God’ type and the human ‘hubris type’ might become intensively discussed in public debates. It is not easy to identify worst case scenarios beyond mere speculation because of lack of knowledge. Probably the worst case scenarios which have been brought forward in the field of nanotechnology and nanobiotechnology will be reconsidered in the field of Synthetic Biology: the ‘ultimate catastrophe’ diagnosed by Jean-Pierre Dupuy and the ‘why the future doesn’t need us’ scenarios by Bill Joy. Both of these dystopian views have to do with loss of human control over technology, and both of them could be related with bio-safety and bio-security issue mentioned above by thinking them to the extreme.

The question I want to deal with in my paper is whether we could learn anything from those worst case scenarios, and what this could be. Some might think about consequences in the light of the ‘Imperative of Responsibility’ by Hans Jonas or regarding the Precautionary Principle. My answer will be, as far as I can see today, sceptical concerning this type of conclusion because of the mere speculative nature of those scenarios.

However, building on the recent debate on the ‘speculative nano-ethics’ I will then show that, in spite of this diagnosis, we can learn from speculative worst case scenarios but in different respect. An ‘explorative philosophy’ could uncover anthropological presuppositions of those worst case scenarios, allow for hermeneutical insight into hidden images of the relation between technology and life, or between humans and technology, possibly relate worst case scenarios of Synthetic Biology with grand narratives of humankind and so on. By doing this we obviously could not learn anything about the future of Synthetic Biology and its implications on society, but we probably would learn a lot about ourselves today. This seems to the most promising insight of investigating worst case scenarios. It reflects that all the stories which are told and debated over the future at the occasion of NEST are result and part of our present thinking.


The Human Right to Health and Democratic Institutions

Gunderson, Martin

gunderson@macalester.edu
It is important to distinguish temporary crises that require immediate aid such as devastating earth quakes from long-term crises brought about by extreme poverty, intractable conflict and the like. In general, I am concerned with an ongoing health crisis—the state of poor health in nations that lack the resources to provide their citizens with adequate heath care. I assume for the sake of argument that there is a human right to health. In particular, I am concerned with the role of democratic decision-making in the implementation of the right to health. Norman Daniels correctly points out in Just Health: Meeting Health Needs Fairly that we cannot simply derive specific health care entitlements from a human right to health. Daniels argues that health care entitlements should be determined on the basis of principles of justice that are applied through a process of deliberation, which he calls “accountability for reasonableness.” On his model, policies that limit health care must be based on rationales that are publically accessible and reasonable. In addition, the policies must be open to revision and regulation. Daniels claims that accountability for reasonableness facilitates democratic decision-making, but he does provide an argument for the role of democracy in creating health care entitlements.

I argue that democratic decision-making regarding the creation of health care entitlements is crucial for the implementation of the right to health. At a practical level democracy, as some have argued, enables people to demand health care entitlements and to hold public officials accountable. At a theoretical level democratic decision-making regarding the availability of health care resources is an extension of individual autonomy in individual health care decisions. In addition, the most plausible philosophical justifications for the right to health also justify a right to democratic decision-making in the implementation of the right to health. Hence as resources are made available to poor nations through international aid in an effort to fulfil the right to health, the process of implementing that right by creating specific health care entitlements requires democratic decision-making.

Unfortunately, some of the nations most in need of aid lack the social conditions and institutions necessary for democratic decision-making. In such cases implementation of the right to health requires efforts at building the sort of civil and national institutions that can support health care entitlements and democratic decision-making. This creates ethical issues that need to be addressed. Significant cultural changes may be needed, and this can give rise to charges of cultural imperialism. In addition, emphasis on cultural change makes it difficult for international humanitarian agencies such as the Red Cross and Red Crescent, as well as the World Health Organization to maintain neutrality regarding local political and ideological disputes. In the end, however, I argue that these issues do not provide compelling objections to the need for creating democratic institutions related to the provision of health care.
Distributing health care according to need – what concept of health care need is needed?

Gustavsson, Erik

erik.gustavsson@liu.se

Scarce resources make priority setting in publicly financed health care systems unavoidable in worst case scenarios as well as in day to day health care. The underlying assumption for priority setting is that there is a gap between individuals’ demands for health care and scarce resources. This raises difficult ethical questions on how to distribute health care services. One generally considered plausible way to do that is according to people’s needs for health care. As intuitively appealing this suggestion might appear at first glance it is not clear what giving care according to the need principle actually means.

To characterize a plausible principle of health care need it seems as a reasonable starting point to explore the conceptual underpinnings of the concept of need. I shall focus on three different views on how to understand needs which are found in the literature, (i) need in an instrumental sense, (ii) need in a categorical sense, and (iii) need in a fundamental sense.

The crucial difference, usually stressed by writers, is between those who claim that all needs statements are instrumental (takes the form of “x needs y in order to z”) and those who deny this claim and argue that some needs statements are categorical or fundamental (takes the form “if x really needs y then x needs y period”). The latter pair derives its normative force from the necessary condition that harm should be avoided while the former derives its normative force from the advancement of well-being. Is this basically the same claim or are there reasons for choosing one over the other in the project of constructing a concept of health care need?

Two interrelated points will be discussed in this presentation. First, it will be made explicit that these three theories share the same conceptual underpinnings of the concept of need. I argue that they all take the instrumental form. Second, I shall discuss whether there are any important differences in the element(s) from which each concept derives its normative force.

Finally, it will be concluded that in the project of constructing a concept of health care need each theory make fruitful contributions to construct a plausible understanding of the concept of health care need and are, in this context, rather three different aspects of the same thing – the concept of health care need.


Humanism as a transcendental basis for intellectual-disability policies and studies

Häyry, Matti

matti.hayry@manchester.ac.uk
In societies that are ideologically and politically committed to the notion of equality it is necessary to choose a criterion for the kind of beings who merit equal respect or equal treatment. Historically, men, citizens, those with economic means, those with defined religious views, and those with defined physiological features have been included in the community of equals, while others have been excluded. Enlightenment philosophers extended the sphere of equality to all rational beings and to all sentient beings; and their critics have used membership in the human species as the measure of dignity and moral worth.

One group whose inclusion in the community of equals has not traditionally been self-evident but has gained momentum during the last decades is constituted by human beings with intellectual disabilities. On what grounds can they be included? On what grounds can they be excluded? Answers to these questions are crucial for policy decisions concerning the treatment of people with intellectual disabilities and informing popular attitudes towards them.

This paper studies answers to the question of including people with intellectual disabilities into the sphere of equal moral consideration and respect. The question will be approached by philosophically examining the views presented by Jeff McMahan and Eva Feder Kittay in an exchange of views during the last decade. McMahan and Kittay represent the opposite poles of the debate, and it is therefore instructive to see how their arguments and counterarguments proceed.

The conclusion will, according to my working hypothesis, be that the only way to grant people with intellectual disabilities an entitlement to equal consideration and respect in policy making and legislation is to assume that humanity as a transcendental principle is the only, or at least the most important, yardstick of moral status.


A Worst Case Balancing Act: Peak Oil, Biofuels and Synthetic Biology

Heavey, Patrick

patric777@ireland.com
Several significant threats may face humanity in the near to medium-term future. Population is growing rapidly, and may increase by 50% from current levels within a few decades. The demand for land, water and food will increase proportionately, yet useable land and agricultural output may be reduced by climate change. Demand for oil will increase with population – in addition to transport requirements, fossil fuels are used in numerous consumer products, including plastics, paints and cosmetics. Peak oil, the time when oil extraction reaches a maximum, to be followed by a decline in output until resources are used up, is likely to occur within the same time frame. This could result in a transition back to an earlier form of civilisation; if such a transition occurs, it is likely to be traumatic.

It would appear to be an ethical imperative that some replacement is found for fossil fuels, while also addressing climate change. Research into biofuels may offer the potential for both. Here biomass (plants, industrial waste, microbes, algae, etc) is used as a source of fuel, and some of the fuels produced have significantly lower greenhouse gas emissions than fossil fuels. In addition, biofuels are a renewable energy source. The Nuffield Council on Bioethics, however, has described current biofuels policies as unethical. One concern is the food vs fuel debate – the fact that land used for biofuels could otherwise be used for food. Biofuel production was a factor in the food riots of 2008. The current technology has also caused significant deforestation, and it poses a threat to biodiversity, threatening numerous species with extinction. Also, while some modes of biofuel production can help reduce greenhouse gas emission, others can increase it by as much as 2,000%.

There is a possibility that advanced biofuels technology, currently at the research and development stage, may help solve some of the ethical issues. Synthetic biology, the nascent attempt to create new forms of life and engineer current life-forms to required specifications, may allow new plant species to be engineered which can produce biofuels more efficiently. Also, algae can be engineered to act as fuel sources; certain species could be cultivated at sea or in areas of unproductive land. These fuel sources are not commercially viable, currently, but synbio could make them so.

But synthetic biology has its own ethical problems. It is the ultimate dual-use activity, with the potential to be applied for great good or great evil. Beneficial advances in one area of synbio could be applied in different areas of synbio research for extremely negative purposes, such as the creation of biological weapons of mass destruction. DIY biology/biohacking is a significant issue – it may grant great destructive power to interested members of the public. There is also potential for disaster due to scientific unknowns and engineering errors. Thomas Douglas and Julian Savulescu have referred to synbio as a possible blueprint for humanity’s destruction.

The advent of synbio could help to solve the fossil fuel crisis, replacing non-renewable fossil fuels with cheap, renewable energy. Or it could add to the above threats, causing a coming together of worst case scenarios of Shakespearian proportions: "When sorrows come, they come not single spies, but in battalions" (Hamlet).
Physicians’ attitudes towards advance directives in England and France: National differences or common policies?

Horn, Ruth

ruth.horn@bristol.ac.uk
Patient-autonomy is an essential element of modern medical practice. Changing demographics and the increasing number of patients with dementia raise question about how patients’ wishes should be taken into account when they are no longer able to express themselves. One instrument to this is the advance directive, whose legal recognition was advocated by the Council of Europe at the beginning of 2012. Yet, although most Western countries, such as England and France, have adopted legislation on advance directives, they are only rarely implemented in practice. In spite of these legal requirements, decisions regarding treatment withdrawal at the end of life remain an urgent problem for physicians.

In this paper I will explore the attitudes of English and French physicians towards advance directives in order to achieve a better understanding of discrepancies between normative standards and their practical implementation. Using semi-structured interviews, I investigated the ways that English and French physicians reflect on the advantages and disadvantages of advance directives. The comparison highlights different value systems and a different understanding of the concepts of autonomy, social responsibilities and solidarity.

Attributing a high value to respect for patient autonomy, most English doctors express concerns regarding the authenticity of an anticipated will. They therefore consider it preferable to discuss the patient’s wishes with them, rather than resorting to signed documents. In France, most physicians do not want their decisions to be led by signed documents because they are afraid of losing their professional autonomy and their responsibility towards the vulnerable person. Alluding to a culture where most physicians are still attached to excessive medical interventions, even at the end of life, some French doctors emphasise the importance of doctors learning when to judge treatment to be disproportionate, rather than turning the decision over to the patients.

The findings suggest that doctors in each country have different needs regarding end-of-life decision-making which are related to their respective cultural, political and philosophical tradition. Seemingly, these needs are not necessarily covered by implementing advance directives. The question arises, then, whether policy makers in each country should first concentrate on specific requirements, such as improving conditions for doctor-patient communication or sensitising doctors for excessive, disproportionate treatment, before trying to apply an internationally recognised instrument. Once these national requirements are satisfied advance directives might be an additional element in improving end-of-life decision-making. Comparing countries and gaining an insight into their particularities enables us to develop a broader knowledge of the problems regarding respect for patient autonomy and thus to generate a common understanding of different needs. Such understanding should facilitate the creation of common policies, like that sought by the Council of Europe.


How is defined the best interest of society when precautionary principle is applied ?

Ispas, Ioana

ioana_isp@yahoo.com
Precautionary principle is explicitly mentioned in EU legislation focused on environment. The use of precautionary principle as moral supporting method for decision making process is based on EC Communication on the precautionary principle (2000) where this principle is discussed and applications for consumer health protection and environment are described. The procedure for risk assessment is based on: 1) risk evaluation; 2) risk management; 3) risk communication. The precautionary principle is used for different purposes such as identification of potential negative effects, scientific evaluation and scientific uncertainty. In medical area the precautionary principle was invoked as decision method in pediatry (Hyder, A., Juul, N. Games, Gambling, and Children: Applying the Precautionary Principle for Child Health .Journal of Child and Adolescent Psychiatric Nursing, 21(4), 202-204(3) 2008), vaccinology (Crowcroft, N., Elliman, D. Vaccination and anesthesia: the precautionary principle is to vaccinate. Paediatric Anaesthesia, 17(12), 1216-1218(3), 2007) as well as in cancer prevention (Hardell, Lennart. Pesticides,soft-tissue sarcoma and non-Hodgkin lymphoma - historical aspects on the precautionary principle in cancer prevention. Acta Oncologica, 47(3), 347-354(8) 2007).

In this paper I will analyse the opinions of the European Group for Ethics in Science and New Technologies (nr.15-24) to highlight the controversies related with the best interest of society and to understand the development of the precautionary principle framework for this particular aspect. In this context I will trace back the EU controversies regarding how to use in practice precautionary principle and I will insist on ethical values to limit or to validate such approaches. Generally speaking the precautionary principle in relation best interest of society was mentioned more in area of new and emerging fields of science and new technologies, linked with solidarity and equity principle.


Human capabilities, mild autism, deafness and the morality of embryo selection

Jaarsma, Pier; Welin, Stellan

pier.jaarsma@liu.se
A preimplantation genetic test for one or more Autism Spectrum Disorders might be developed in the foreseeable future. Recently, the philosophers Julian Savulescu and Guy Kahane claimed, among other things, that there are strong reasons for prospective parents to seek to prevent the birth of children who are disposed to Autism or Asperger’s Disorder. In this paper we will criticize this claim.

We will discuss the morality of selection for mild autism in embryo selection in a hypothetical IVF situation where Preimplantation Genetic Diagnostics is performed and compare this with a similar selection for congenital deafness. To do this we first discuss some human differences that are relevant. We then introduce the Principle of human Capabilities (PC) and compare this principle with the Principle of procreative Beneficence (PB) introduced by Savalescu and Kahane. We apply the two principles to selection for mild autism and selection for congenital deafness. We argue that PC allows for the selection for mild autism but rules out selection for congenital deafness. PB will not give clear answers; the ruling of PB depends to a large extent on expected social, cultural and political developments.

We will introduce and discuss another intuitive principle, the principle of human flourishing (PF) and compare it with PB and PC. We will discuss arguments for the value of autism in our world and argue that persons with autism may flourish and have a reasonable good life. Under PC and under PF it is morally permissible to select for mild autism in the PGD situation. To select for congenital deafness is morally wrong under PC and a clear answer is neither given by PB nor PF. The wider PB (WPB) gives only one very robust recommendation: procreate with someone rich. We will argue that PC is preferable to PB and WPB as well as PF.
Clinical Responsibility When Refusing to Treat with Donor Gametes

Jenkins, Simon; Draper, Heather; Ives, Jonathan; Avery, Sue

SPJ029@bham.ac.uk
Donated gametes can be used to help parents avoid passing on genetic conditions that cause suffering and disability. Clinics offering treatment with donated gametes are governed by the Human Fertilisation and Embryology Act, which stipulates that they must consider ‘the welfare of any child who may be born as a result of the treatment […] and of any other child who may be affected by the birth (Human Fertilisation and Embryology Act (2008), section 14 (2), available at http://www.legislation.gov.uk/ukpga/2008/22/contents). The accompanying Code of Practice states that the treating clinician must take into account a patient’s ‘medical history, where the medical history indicates that any child who may be born is likely to suffer a serious medical condition’ (Human Fertilisation and Embryology Authority Code of Practice, section 8.10 b) iii), available at http://www.hfea.gov.uk/5473.html). While it seems clear that there is a legal obligation to avoid the birth of such children, it is not clear whether clinics are only morally responsible for children born as a result of treatment, because given that putative parents seeking to avoid passing on genetic condition may be fertile, children could be born as a result of a clinic’s refusal to treat.

This paper will argue that fertility clinics already concern themselves with the welfare of people other than the patients themselves (for example the patient’s partner, the child who will result from treatment, and any other child who will be affected). One potential objection here is that the people whose welfare clinics already consider are people who can be considered patients themselves. This may be true in some cases, but it is not clear that the child who will be born from treatment is a patient at the time of treatment, given the view of the legal and moral status of gametes suggested by other practices (such as their routine destruction). It is perhaps even harder to see how an already-existing child is a patient in such a way.

Given this, the paper will argue that to be consistent, clinics must also consider the welfare of children who may be born as a result of a refusal to treat. It might be argued here that clinics should move in the opposite direction in order to achieve consistency, such that they cease to account for the welfare of these groups who have been shown not to be patients, but this paper will argue that the consequences of failing to account for the welfare of children in gamete allocation are too dire to countenance. This gives clinics a reason to prioritise the fertile with heritable genetic conditions over the infertile where gametes are in short supply even where this means that the infertile may not have the opportunity to reproduce at all. This conclusion takes seriously Savulescu’s argument that ‘doctors [should] be influenced by reasons for action which go beyond the welfare of the individual concerned […including] the welfare of others’ (Savulescu, Julian 1999. ‘Should doctors intentionally do less than the best?’ in Journal of Medical Ethics; 25).

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