Freedom and a right (not) to know

The article discusses the relationship between the notion of a moral right to personal self-determination, the notion of a moral right to know and the notion of a moral right not to know. In particular, the author asks under what conditions, if any, the right to self-determination implies a right to have information or a right not to have information. The conclusions he defends are theoretical in character rather than concrete norms and directions, and they are intended to be relevant in many contexts, not only in the context of information concerning, say, medical decisions. Yet the author restates the question concerning the right to have and especially the right not to have genetic knowledge about one's own genes on the basis of a right to self-determination. He argues that a right (not) to have genetic information can be defended on the ground of a right to self-determination, but that this kind of defense presupposes several normative, and controversial, arguments.     

Experiences of Genetic Risk: Disclosure and the Gendering of Responsibility

The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with the moral duty to disclose genetic information? Scholars have argued that gender is partly comprised of distinct assignments and assumptions of responsibility. Thus, there is a danger that gendered patterns of socialization will make women feel that they should take primary responsibility for disclosing genetic information to others. This article explores issues of responsibility and disclosure of risk information by drawing on an empirical study of women and men who have undergone genetic testing for hereditary breast/ovarian cancer. The research study suggests that disclosure of genetic information is a gendered activity, with both the benefits and burdens of this task falling primarily on women. It also illustrates that when disclosure is understood contextually, it is a far more complicated matter than when viewed through a theoretical lens. The article considers the relevance of these findings on ethical debate and genetic counselling practices.     

On our obligation to select the best children: a reply to Savulescu

The purpose of this paper is to examine critically Julian Savulescu's claim that people should select, of the possible children they could have, the one who is expected to have the best life, or at least as good a life as the others, based on the relevant, available genetic information, including information about non-disease genes. I argue here that in defending this moral obligation, Savulescu has neglected several important issues such as access to selection technologies, disproportionate burdens on women, difficulties in determining what is best, problems with aggregate effects of individual choices, and questions about social justice. Taking these matters into account would call such a moral requirement into serious question.     

Traveling questions: uncertainty and nonknowledge as vehicles of translation in genetic research participation

In this paper, I argue that uncertainty and nonknowledge, and not just research results, can be important vehicles of translation through which genetic research participation comes to affect the lives of research participants. Based on interviews with participants in a genetic research project, I outline epistemic, emotional, relational and moral implications of research participation. Many of them resemble what the literature has described as the social implications of genetic counseling, but here they stem from interaction with knowledge-in-the-making or what I simply call nonknowledge. While policies aimed at stimulating translation from bench to bedside tend to build on the assumption that research only works when knowledge translates into technological ability and creates utility, I suggest acknowledging that research has implications long before any clinical applications are at hand. Research questions, and not just results, may serve as a generative form of knowledge that can travel as fast as any answer.     

The evolution of moral progress and biomedical moral enhancement

In The Evolution of Moral Progress Allen Buchanan and Russell Powell advance an evolutionary explanation of moral progress by morality becoming more ‘inclusivist’. We are prepared to accept this explanation as far as it goes, but argue that it fails to explain how morality can become inclusivist in the fuller sense they intend. In fact, it even rules out inclusivism in their intended sense of moral progress, since they believe that human altruism and prosocial attitudes are essentially parochial. We also respond to their charge that the possibility of moral enhancement by biomedical means that we have defended in numerous publications assumes that moral attitudes are biologically hard‐wired to an extent that implies that they are resilient to the influence of cognitive or cultural factors. Quite the contrary, we think they are more open to such influence than they seem to do.     

Drawing a Line: Situating Moral Boundaries in Genetic Medicine

Bioethics traditionally focuses on establishing moral limits between different types of acts. However, boundaries are established by communities and individuals who differ in the constraints shaping their moral world. Phase boundaries, the sites of transition between two physical phases such as a liquid and a gas, provide a metaphor for 'drawing a line' in bioethics discourse. Phase boundaries occur where the physical constraints allow both phases to coexist in stable equilibrium. This relationship can also be considered in reverse, using the known position of the phase boundary to disclose the physical constraints. By analogy, instead of trying to locate the 'correct' moral boundary, the alternative perspective of 'reverse ethics' works from a commonly accepted boundary to examine the constraints of the moral world that are being used to establish it. Genetic interventions into the human body provide interesting examples of boundary establishment. In gene therapy, focusing on boundaries has resulted in a model of moral permissibility that ignores some alternative standpoints and increases the potential for conflict between them. Reverse ethics examines such conflicts in terms of the nature of the moral worlds that have come into contact with each other, taking seriously the diversity of factors governing the location of a boundary, in ways that might help shift some entrenched lines of conflict.     

The ethics of efficacy in North India's goonda raj (rule of toughs)

This study of goondas (gangsters or toughs) in North Indian politics comes by way of a comment on intellectual method in the anthropology of moralities. More especially, it offers critical remarks on the recent adoption of ‘virtue’ as the cardinal moral co‐ordinate of human life. Drawing on field research conducted across northern India, we show that when people celebrate goondas as leaders, they do so not because they see in them virtuous men, but because they think them capable of ‘getting things done’. This ethics of efficacy is neither merely instrumental nor is it but another variant of virtue ethics. It presents, instead, an altogether different moral teleology orientated towards effective action rather than excellent character. While challenging the self‐centred bent of the late anthropology of ethics, we also make preliminary remarks on the contrast between ‘moral’ and ‘practical’ judgement, and the limits of ‘the moral’ as such.     

Fostering caring relationships: Suggestions to rethink liberal perspectives on the ethics of newborn screening

Newborn screening (NBS) involves the collection of blood from the heel of a newborn baby and testing it for a list of rare and inheritable disorders. New biochemical screening technologies led to expansions of NBS programs in the first decade of the 21st century. It is expected that they will in time be replaced by genetic sequencing technologies. These developments have raised a lot of ethical debate. We reviewed the ethical literature on NBS, analyzed the issues and values that emerged, and paid particular interest to the type of impacts authors think NBS should have on the lives of children and their families. Our review shows that most authors keep their ethical reflection confined to policy decisions, about for instance (a) the purpose of the program, and (b) its voluntary or mandatory nature. While some authors show appreciation of how NBS information empowers parents to care for their (diseased) children, most authors consider these aspects to be ‘private’ and leave their evaluation up to parents themselves. While this division of moral labor fits with the liberal conviction to leave individuals free to decide how they want to live their private lives, it also silences the ethical debate about these issues. Given the present and future capacity of NBS to offer an abundance of health‐related information, we argue that there is good reason to develop a more substantive perspective to whether and how NBS can contribute to parents’ good care for children.     

Rationale for an integrated approach to genetic epidemiology

Conclusion: Genetic knowledge is now in the public domain and its interpretation by the media and the citizens brings the issues into the public forum of discussion for the necessary ethical, legal and socio-cultural evaluation of its application. Science is being perceived by some as dangerous and as requiring international regulation. Others feel that genetic knowledge will be the breakthrough that will permit medical progress and individual autonomy with regards to personal health and lifestyle choices. The mapping of the human genome has already yielded valuable information on an increasing number of diseases and their variants. Prevailing popular and journalistic archetypes ("imaginaires") used in the media are perceived by the producers as slowing down the possible application of genetic knowledge. The answers to these dilemmas are not readily apparent nor are they prescribed by classical philosophy of medicine. Since genetic knowledge eventually resides with the individual who carries the genes of disease and/or susceptibility, a logical approach to integration of this knowledge at a societal level would seem to reside with individual education and decision-making. The politics of the ensuing social debate could transform the current social contract since an individual's interests need to be balanced against those of his or her immediate family in the sharing of information. The ethical foundations of such a contract requires the genetic education of "Everyone" as a matter of urgent priority. Genetic education should not serve ideological power struggles between the medical establishment and the ethical-legal alliance. Instead, it should ensure the transfer of knowledge to physicians, to patients, to users, to planners, to social science and humanities researchers and to politicians, so that they may make "informed" and free decisions....     

Judgments of moral responsibility in tissue donation cases

If a person requires an organ or tissue donation to survive, many philosophers argue that whatever moral responsibility a biological relative may have to donate to the person in need will be grounded at least partially, if not entirely, in biological relations the potential donor bears to the recipient. We contend that such views ignore the role that a potential donor's unique ability to help the person in need plays in underwriting such judgments. If, for example, a sperm donor is judged to have a significant moral responsibility to donate tissue to a child conceived with his sperm, we think this will not be due to the fact that the donor stands in a close biological relationship to the recipient. Rather, we think such judgments will largely be grounded in the presumed unique ability of the sperm donor to help the child due to the compatibility of his tissues and organs with those of the recipient. In this paper, we report the results of two studies designed to investigate the comparative roles that biological relatedness and unique ability play in generating judgments of moral responsibility in tissue donation cases. We found that biologically related individuals are deemed to have a significant moral responsibility to donate tissue only when they are one of a small number of people who have the capacity to help.     

The Immoral Landscape? Scientists Are Associated with Violations of Morality

Do people think that scientists are bad people? Although surveys find that science is a highly respected profession, a growing discourse has emerged regarding how science is often judged negatively. We report ten studies (N = 2328) that investigated morality judgments of scientists and compared those with judgments of various control groups, including atheists. A persistent intuitive association between scientists and disturbing immoral conduct emerged for violations of the binding moral foundations, particularly when this pertained to violations of purity. However, there was no association in the context of the individualizing moral foundations related to fairness and care. Other evidence found that scientists were perceived as similar to others in their concerns with the individualizing moral foundations of fairness and care, yet as departing for all of the binding foundations of loyalty, authority, and purity. Furthermore, participants stereotyped scientists particularly as robot-like and lacking emotions, as well as valuing knowledge over morality and being potentially dangerous. The observed intuitive immorality associations are partially due to these explicit stereotypes but do not correlate with any perceived atheism. We conclude that scientists are perceived not as inherently immoral, but as capable of immoral conduct.     

Theory and practice of clinical ethics support services: narrative and hermeneutical perspectives

In this paper we introduce narrative and hermeneutical perspectives to clinical ethics support services (CESS). We propose a threefold consideration of 'theory' and show how it is interwoven with 'practice' as we go along. First, we look at theory in its foundational role: in our case 'narrative ethics' and 'philosophical hermeneutics' provide a theoretical base for clinical ethics by focusing on human identities entangled in stories and on moral understanding as a dialogical process. Second, we consider the role of theoretical notions in helping practitioners to understand their situation in clinical ethics practice, by using notions like 'story', 'responsibility', or 'vulnerability' to make explicit and explain their practical experience. Such theoretical notions help us to interpret clinical situations from an ethical perspective and to foster moral awareness of practitioners. And, thirdly, we examine how new theoretical concepts are developed by interpreting practice, using practice to form and improve our ethical theory. In this paper, we discuss this threefold use of theory in clinical ethics support services by reflecting on our own theoretical assumptions, methodological steps and practical experiences as ethicists, and by providing examples from our daily work. In doing so, we illustrate that theory and practice are interwoven, as theoretical understanding is dependent upon practical experience, and vice-versa.     

Testing participation in BRCA1/2-positive families: initiator role of index cases

The objectives of this study were to: (1) describe diffusion of information by affected women in whom a mutation has been identified (index cases) to their families and testing participation among high-risk relatives; (2) assess information recall and understanding by index cases and their satisfaction with the testing process; and (3) determine the factors associated with higher/lower testing decision in the family. Thirty index cases completed a self-administered questionnaire assessing their personal and family characteristics and their satisfaction with their own genetic testing process and a telephone interview to evaluate their knowledge about the risk of a genetic predisposition to breast and ovarian cancer, the type and number of close relatives that they informed, and the difficulties that they encountered. Information about breast/ovarian cancer risk and test availability was generally well transmitted (75%), predominantly (88%) to first-degree relatives. In contrast, testing participation was low (15%) and essentially occurred among sisters and daughters. There was a general lack of knowledge despite a high level of satisfaction regarding the information given by the geneticist. Family support and the knowledge of index cases about the risk of transmission of BRCA1/2 mutations by women were found to be positively and significantly associated with the testing decision among first-degree relatives. Difficulties in informing relatives appeared to be related to poor understanding of the information by index cases, as well as fear, and avoidance among close relatives. A major challenge for genetic counseling is to ensure that consulting patients not only receive complete understanding but also understand this information and anticipate the impact of the test result before deciding to take the test.     

In Defense of Prenatal Genetic Interventions

Jürgen Habermas has argued against prenatal genetic interventions used to influence traits on the grounds that only biogenetic contingency in the conception of children preserves the conditions that make the presumption of moral equality possible. This argument fails for a number of reasons. The contingency that Habermas points to as the condition of moral equality is an artifact of evolutionary contingency and not inviolable in itself. Moreover, as a precedent for genetic interventions, parents and society already affect children's traits, which is to say there is moral precedent for influencing the traits of descendants. A veil‐of‐ignorance methodology can also be used to justify prenatal interventions through its method of advance consent and its preservation of the contingency of human identities in a moral sense. In any case, the selection of children's traits does not undermine the prospects of authoring a life since their future remains just as contingent morally as if no trait had been selected. Ironically, the prospect of preserving human beings as they are – to counteract genetic drift – might even require interventions to preserve the ability to author a life in a moral sense. In light of these analyses, Habermas' concerns about prenatal genetic interventions cannot succeed as objections to their practice as a matter of principle; the merits of these interventions must be evaluated individually.     

'Cells' and 'organisms' as a habitat for DNA.

Although the bulk of the hereditary information in bacteria is organized as a single chromosome, it has been known for some years now that bacteria may also carry pieces of self-replicating extrachromosomal DNA. These units are known as plasmids. Sometimes such plasmids carry the information necessary to give rise to mature bacterial viruses under appropriate conditions, but in other cases they specify the production of enzymes and other proteins which alter the bacterial phenotype. Plasmids are often inessential for survival of bacteria, although they may widen the range of environmental conditions under which they flourish. Thus plasmids may be thought of as adventitious additions to the genetic content of bacterial cells. Recently it has become clear that furthur organizational units of DNA are to be found in bacterial cells. These units are called insertion sequences and transposons. Unlike plasmids and the chromosome, however, these DNA units do not carry enough genetic information to specify their own independent replication: they must rely on plasmids or the chromosome for that purpose. Nevertheless they behave in many respects as independent functional units. Although it is possible to think of the chromosome, plasmids and transposons/insertion sequences as three distinct hierarchies of bacterial DNA, genes may move from one hierarchy to another; and such transitions have important implications for the evolution of bacterial populations. Moreover, their study in bacteria may throw much light on the type of DNA interactions occurring in higher cells.     

Alcohol dependence associated with increased utilitarian moral judgment: a case control study

Recent studies indicate that emotional processes, mediated by the ventromedial prefrontal cortex (VMPC), are of great importance for moral judgment. Neurological patients with VMPC dysfunction have been shown to generate increased utilitarian moral judgments, i.e. are more likely to endorse emotionally aversive actions in order to maximize aggregate welfare, when faced with emotionally salient personal moral dilemmas. Patients with alcohol dependence (AD) also exhibit impairments in functions mediated by the prefrontal cortex, but whether they exhibit increased utilitarian moral reasoning has not previously been investigated. The aim of this study was to investigate moral judgment in AD patients (n = 20) compared to healthy controls (n = 20) matched by sex, age and education years. Each subject responded to a battery of 50 hypothetical dilemmas categorized as non-moral, moral impersonal and moral personal. They also responded to a questionnaire evaluating explicit knowledge of social and moral norms. Results confirmed our hypothesis that AD patients generated increased utilitarian moral judgment compared to controls when faced with moral personal dilemmas. Crucially, there was no difference in their responses to non-moral or impersonal moral dilemmas, nor knowledge of explicit social and moral norms. One possible explanation is that damage to the VMPC, caused by long term repeated exposure to alcohol results in emotional dysfunction, predisposing to utilitarian moral judgment. This work elucidates a novel aspect of the neuropsychological profile of AD patients, namely a tendency to generate utilitarian moral judgment when faced with emotionally salient moral personal dilemmas.     

The GAMY Project: young people’s attitudes to genetics in the South Wales valleys

This paper explores young people’s attitudes to genetics. It describes a qualitative study involving a group of teenagers in a deprived South Wales valley town over a period of 18 months. The GAMY (Genetics and Merthyr Youth) Project involved a series of interactions with participants, including 2 interviews, 4 group days and 4 genetics tasks through which these young people learned about, and then reflected upon, issues relating to genetics and health. We have gathered data about the informed attitudes of teenagers to genetics based on deliberative learning and reflection over a long period of time, and as such this paper provides useful insights into the underlying values that are guiding young people’s views and the factors that are shaping their responses to new genetic technologies. Attitudes to genetics are complex and not easily generalisable. There were low levels of familiarity with, and knowledge of, genetics from the outset. Most young people did not have pre-existing attitudes towards genetics and had given little or no thought to the topic before the project began. However, levels of awareness and general genetic literacy increased as the project progressed. This study suggests that over time young people can develop an awareness of genetics that makes sense to them; they demonstrate that they can think creatively about genetics, and they are able to engage in considering genetic and other risk factors when thinking about health and disease.     

Secrets of the subterranean pathosystem of Armillaria

Armillaria root disease affects fruit and nut crops, timber trees and ornamentals in boreal, temperate and tropical regions of the world. The causal pathogens are members of the genus Armillaria (Basidiomycota, Physalacriaceae). This review summarizes the state of knowledge and highlights recent advances in Armillaria research. Taxonomy: Armillaria includes more than 40 morphological species. However, the identification and delineation of species on the basis of morphological characters are problematic, resulting in many species being undetected. Implementation of the biological species' concept and DNA sequence comparisons in the contemporary taxonomy of Armillaria have led to the discovery of a number of new species that are not linked to described morphological species. Host range: Armillaria exhibits a range of symbioses with both plants and fungi. As plant pathogens, Armillaria species have broad host ranges, infecting mostly woody species. Armillaria can also colonize orchids Galeola and Gastrodia but, in this case, the fungus is the host and the plant is the parasite. Similar to its contrasting relationships with plants, Armillaria acts as either host or parasite in its interactions with other fungi. Disease control: Recent research on post-infection controls has revealed promising alternatives to the former pre-plant eradication attempts with soil fumigants, which are now being regulated more heavily or banned outright because of their negative effects on the environment. New study tools for genetic manipulation of the pathogen and characterization of the molecular basis of the host response will greatly advance the development of resistant rootstocks in a new stage of research. The depth of the research, regardless of whether traditional or genomic approaches are used, will depend on a clear understanding of where the different propagules of Armillaria attack a root system, which of the pathogen's diverse biolymer-degrading enzymes and secondary metabolites facilitate infection, and how the course of infection differs between resistant and susceptible hosts.     

Moral enhancement and freedom

This paper identifies human enhancement as one of the most significant areas of bioethical interest in the last twenty years. It discusses in more detail one area, namely moral enhancement, which is generating significant contemporary interest. The author argues that so far from being susceptible to new forms of high tech manipulation, either genetic, chemical, surgical or neurological, the only reliable methods of moral enhancement, either now or for the foreseeable future, are either those that have been in human and animal use for millennia, namely socialization, education and parental supervision or those high tech methods that are general in their application. By that is meant those forms of cognitive enhancement that operate across a wide range of cognitive abilities and do not target specifically 'ethical' capacities. The paper analyses the work of some of the leading contemporary advocates of moral enhancement and finds that in so far as they identify moral qualities or moral emotions for enhancement they have little prospect of success.