From single biobanks to international networks: developing e-governance

The future holds the possibility to link and network biobanks, existing biorepositories and reference databases for research purposes in ways that have not been possible before. There is the potential to develop 'research portals' that will enable researchers to access these research resources that are located around the globe with the click of a mouse. In this paper, I will argue that our current governance system for research is unable to provide all of the oversight and accountability mechanisms that are required for this new way of doing research that is based upon flows of data across international borders. For example, our current governance framework for research is nationally based, with a complex system of laws, policies and practice that can be unique to a jurisdiction. It is also evident that many of the nationally based governance bodies in this field do not have the legal powers or expertise to adjudicate on the complex issues, such as privacy and disclosure risks that are raised by cross-border data sharing. In addition, the conceptual underpinning of this research governance structure is based on the "one researcher, one project, one jurisdiction" model. In the conclusion of this paper, I lay out some preliminary ideas as to how this system has to change to accommodate research that is based on networks. I suggest that a move to digital governance mechanisms might be a start to making research governance systems more appropriate for the 21st century.     

Owning Genetic Information and Gene Enhancement Techniques: Why Privacy and Property Rights May Undermine Social Control of the Human Genome

In this article I argue that the proper subjects of intangible property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy these intangible property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or societal invasions into private domains. I argue that the threshold for overriding privacy rights and intangible property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is commonly suggested. Once the bar is raised, so-to-speak, the burden of overriding it is formidable. Thus many policy decisions that have been recently proposed or enacted – citywide audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national bans on genetic testing and enhancement of humans, to name a few – will have to be backed by very strong arguments.     

The evolution of developmental gene networks: lessons from comparative studies on holometabolous insects

Recent comparative studies have revealed significant differences in the developmental gene networks operating in three holometabolous insects: the beetle Tribolium castaneum, the parasitic wasp Nasonia vitripennis and the fruitfly Drosophila melanogaster. I discuss these differences in relation to divergent and convergent changes in cellular embryology. I speculate on how segmentation gene networks have evolved to operate in divergent embryological contexts, and highlight the role that co-option might have played in this process. I argue that insects represent an important example of how diversification in life-history strategies between lineages can lead to divergence in the genetic and cellular mechanisms controlling the development of homologous adult structures.     

Biobank governance: a lesson in trust

Biobanks are controversial due to their ethical, legal, and social implications. Recent discussion has highlighted a central role for governance in helping to address these controversies. We argue that sustainable governance of biobanks needs to be informed by public discourse. We present an analysis of a deliberative public engagement to explore the public values, concerns, and interests underlying recommendations pertaining to biobank governance. In particular, we identify five themes underlying expressed goals and concerns of participants regarding the development, operation and application of biobank research. Ultimately, we argue that, for the deliberants, governance represented a way to achieve trust in biobanks through accountability, transparency and control. As discussion of biobank governance moves the conceptual to the specific, policy makers and researchers should acknowledge the importance of the public viewpoint in maintaining trust; this acknowledgement is of importance to the ultimate success and longevity of biobanks.     

Persons Versus Brains: Biological Intelligence in Human Organisms

I go deep into the biology of the human organism to argue that the psychological features and functions of persons are realized by cellular and molecular parallel distributed processing networks dispersed throughout the whole body. Persons supervene on the computational processes of nervous, endocrine, immune, and genetic networks. Persons do not go with brains.     

Institutional Governance and Refugee Resistance: Displaced Karen in the Thai–Burma Borderlands

Displaced Karen constitute a complex array of actors in the Thai–Burma borderlands. Forms of governance meant to contain and control these actors are framed by practices of territorial sovereignty and bureaucratic processes of identification and resource allocation. This article examines forms of institutional governance through two broad authorities, the state (predominantly the Thai government) and the humanitarian aid apparatus. It argues that the operations of these two authorities establish a series of control over space and movement and a system of administrative categorisation that works to identify and regulate displaced populations. Based on an ethnographic study of displaced Karen residing in the Thai–Burma borderlands, I go on to argue that the Karen challenge these institutional forms of governance because they do not adequately capture their claims for political autonomy. Key features of this political autonomy include Karen understandings of being a refugee and their experience of the refugee apparatus, their advocacy around human rights abuses, and their agitation for political and social change. I argue that these challenges represent a reframing of the discourse around refugeedom, where displaced Karen bring the experience of displacement back into the ‘humanitarian case’ and pursue a desire to be actively engaged in a political resolution to their displacement.     

Reduplication in a computational HPSG of Hausa

In this article, I shall discuss the treatment of reduplication, and most notably total reduplication in an implemented grammar of Hausa. I shall compare several patterns observed in the language and conclude, on the basis of segmental and suprasegmental properties alike, that partial and total reduplication operate on entirely different structures: phonological representations of limited size (max: CVC) in the case of partial reduplication, and morphological representations, such as stems in the case of total reduplication. Finally, I shall show that partial reduplication can readily be captured by the morphophonological means offered by the underlying formalism, yet argue that total reduplication is best modelled on the basis of a binary morphological construction. I shall propose a formalisation that keeps all of the linguistic generalisations within the grammar proper, yet ensures compositionality and reversibility.     

HUMAN GENE THERAPY: DOWN THE SLIPPERY SLOPE?

The strength of a slippery slope argument is a matter of some dispute. Some see it as a reasonable argument pointing out what probably or inevitably follows from adopting some practice, others see it as essentially a fallacious argument. However, there seems to be a tendency emerging to say that in many cases, the argument is not actually fallacious, although it may be unsubstantiated. I shall not try to settle this general discussion, but merely seek to assess the strength of the slippery slope argument applied to human gene therapy. The structure of my argument will be the following. First, I shall distinguish between three different versions of the slippery slope argument; two logical versions and an empirical one. Next, I will address human gene therapy in terms of each of the three versions, partly relying on slippery slope arguments against this practice that have already surfaced in the literature. I shall argue that neither version pulls through. The logical versions fail primarily because relevant distinctions can be made between different uses of gene therapy, contrary to what the proponents of the arguments claim. The empirical version fails because there seems to be no evidence supporting the claim that we shall in fact slide down the slope if we engage in gene therapy, and because if we accepted the conclusion that we should not allow gene therapy on the basis of the empirical argument, we should have to make very far-reaching and undesirable modifications in health care in general, in order to be consistent. Or at least so I shall argue.     

Genetic enhancement--a threat to human rights?

Genetic enhancement is the modification of the human genome for the purpose of improving capacities or 'adding in' desired characteristics. Although this technology is still largely futuristic, debate over the moral issues it raises has been significant. George Annas has recently leveled a new attack against genetic enhancement, drawing on human rights as his primary weapon. I argue that Annas' appeal to human rights ultimately falls flat, and so provides no good reason to object to genetic technology. Moreover, this argument is an example of the broader problem of appealing to human rights as a panacea for ethical problems. Human rights, it is often claimed, are 'trumps': if it can be shown that a proposed technology violates human rights, then it must be cast aside. But human rights are neither a panacea for ethical problems nor a trump card. If they are drafted into the service of an argument, it must be shown that an actual human rights violation will occur. Annas' argument against genetic technology fails to do just this. I shall conclude that his appeal to human rights adds little to the debate over the ethical questions raised by genetic technology.     

Competing Models of Stability in Complex, Evolving Systems: Kauffman vs. Simon

I criticize Herbert Simon's argument for the claim that complex natural systems must constitute decomposable, mereological or functional hierarchies. The argument depends on certain assumptions about the requirements for the successful evolution of complex systems, most importantly, the existence of stable, intermediate stages in evolution. Simon offers an abstract model of any process that succeeds in meeting these requirements. This model necessarily involves construction through a decomposable hierarchy, and thus suggests that any complex, natural, i.e., evolved, system is constituted by a decomposable hierarchy. I argue that Stuart Kauffman's recent models of genetic regulatory networks succeed in specifying processes that could meet Simon's requirements for evolvability without requiring construction through a decomposable hierarchy. Since Kauffman's models are at least as plausible as Simon's model, Simon's argument that complex natural systems must constitute decomposable, mereological or functional hierarchies does not succeed.     

Racial discrimination: How not to do it

The UNESCO Statements on Race of the early 1950s are understood to have marked a consensus amongst natural scientists and social scientists that ‘race’ is a social construct. Human biological diversity was shown to be predominantly clinal, or gradual, not discreet, and clustered, as racial naturalism implied. From the seventies social constructionists added that the vast majority of human genetic diversity resides within any given racialised group. While social constructionism about race became the majority consensus view on the topic, social constructionism has always had its critics. Sesardic (2010) has compiled these criticisms into one of the strongest defences of racial naturalism in recent times. In this paper I argue that Sesardic equivocates between two versions of racial naturalism: a weak version and a strong version. As I shall argue, the strong version is not supported by the relevant science. The weak version, on the other hand, does not contrast properly with what social constructionists think about ‘race’. By leaning on this weak view Sesardic’s racial naturalism intermittently gains an appearance of plausibility, but this view is too weak to revive racial naturalism. As Sesardic demonstrates, there are new arguments for racial naturalism post-Human Genome Diversity Project. The positive message behind my critique is how to be a social constructionist about race in the post-genomic era.     

Texture density adaptation and visual number revisited

Burr and Ross [1] have recently proposed that the visual dimension of number is itself directly adaptable. The aftereffect they describe is one that my colleagues and I previously used to investigate the perception of texture density [2-4]. Burr and Ross [1] argue that the effect is new because it concerns visual number, rather than texture density, but they did not report critical tests to support this claim. Here, I shall briefly describe the striking similarity between our prior work and that of Burr and Ross [1], and discuss how some of our results rule out Burr and Ross's [1] interpretation that numerosity, and not density, is at play. I shall also provide a new demonstration that confirms that these effects are based on density, using a display that explicitly dissociates density from numerosity. Taken together, this line of arguments suggests that Burr and Ross's [1] recent study may best be thought of as replicating support within a well-established line of work on texture density.     

The structure of diversity within New World mitochondrial DNA haplogroups: implications for the prehistory of North America

The mitochondrial DNA haplogroups and hypervariable segment I (HVSI) sequences of 1,612 and 395 Native North Americans, respectively, were analyzed to identify major prehistoric population events in North America. Gene maps and spatial autocorrelation analyses suggest that populations with high frequencies of haplogroups A, B, and X experienced prehistoric population expansions in the North, Southwest, and Great Lakes region, respectively. Haplotype networks showing high levels of reticulation and high frequencies of nodal haplotypes support these results. The haplotype networks suggest the existence of additional founding lineages within haplogroups B and C; however, because of the hypervariability exhibited by the HVSI data set, similar haplotypes exhibited in Asia and America could be due to convergence rather than common ancestry. The hypervariability and reticulation preclude the use of estimates of genetic diversity within haplogroups to argue for the number of migrations to the Americas.     

The balance of weak and strong interactions in genetic networks

Genetic interactions are being quantitatively characterized in a comprehensive way in several model organisms. These data are then globally represented in terms of genetic networks. How are interaction strengths distributed in these networks? And what type of functional organization of the underlying genomic systems is revealed by such distribution patterns? Here, I found that weak interactions are important for the structure of genetic buffering between signaling pathways in Caenorhabditis elegans, and that the strength of the association between two genes correlates with the number of common interactors they exhibit. I also determined that this network includes genetic cascades balancing weak and strong links, and that its hubs act as particularly strong genetic modifiers; both patterns also identified in Saccharomyces cerevisae networks. In yeast, I further showed a relation, although weak, between interaction strengths and some phenotypic/evolutionary features of the corresponding target genes. Overall, this work demonstrates a non-random organization of interaction strengths in genetic networks, a feature common to other complex networks, and that could reflect in this context how genetic variation is eventually influencing the phenotype.     

Designing humans: A human rights approach

Advances in genomic technologies such as CRISPR‐Cas9, mitochondrial replacement techniques, and in vitro gametogenesis may soon give us more precise and efficient tools to have children with certain traits such as beauty, intelligence, and athleticism. In this paper, I propose a new approach to the ethics of reproductive genetic engineering, a human rights approach. This approach relies on two claims that have certain, independent plausibility: (a) human beings have equal moral status, and (b) human beings have human rights to the fundamental conditions for pursuing a good life. I first argue that the human rights approach gives us a lower bound of when reproductive genetic engineering would be permissible. I then compare this approach with other approaches such as the libertarian, perfectionist, and life worth living approaches. Against these approaches, I argue that the human rights approach offers a novel, and more plausible, way of assessing the ethics of reproductive genetic engineering.     

Eugenics and Mandatory Informed Prenatal Genetic Testing: A Unique Perspective from China

The application of genetic technologies in China, especially in the area of prenatal genetic testing, is rapidly increasing in China. In the wealthy regions of China, prenatal genetic testing is already very widely adopted. We argue that the government should actively promote prenatal genetic testing to the poor areas of the country. In fact, the government should prioritize resources first to make prenatal genetic testing a standard routine care with an opt‐out model in these area. Healthcare professions would be required to inform pregnant women about the availability of genetic testing and provide free testing on a routine basis unless the parents choose not to do so. We argue that this proposal will allow parents to make a more informed decision about their reproductive choices. Secondarily, this proposal will attract more healthcare professionals and other healthcare resources to improve the healthcare infrastructures in the less‐developed regions of the country. This will help to reduce the inequity of accessing healthcare services between in different regions of China. We further argue that this policy proposal is not practicing eugenics.     

Shifting values partly explain the debate over group selection

I argue that images of the notion of group, in correspondence with their social and political values, shape the debate over the evolution of altruism by group selection. Important aspects of this debate are empirical, and criteria can decide among a variety of selection processes. However, leading researchers undermine or reinterpret such tests, explaining the evolution of altruism on the basis of a single extreme metaphor of ‘group’ and a single inclusive selection process. I shall argue that the extreme images for the notion of group are associated with ideologies that these researchers support or fear. Hence, the history of social and political uses of ‘group’ and ‘group selection’ can explain, at least in part, some of the empirical deficiencies of the debate, and why it has continued without resolution or dissolution.     

RETRACING LIBERALISM AND REMAKING NATURE: DESIGNER CHILDREN,RESEARCH EMBRYOS,AND FEATHERLESS CHICKENS

Liberal theory seeks to achieve toleration, civil peace, and mutual respect in pluralistic societies by making public policy without reference to arguments arising from within formative ideals about what gives value to human life. Does it make sense to set aside such conceptions of the good when it comes to controversies about stem cell research and the genetic engineering of people or animals? Whether it is reasonable to bracket our worldviews in such cases depends on how we answer the moral questions that the use of these biotechnologies presuppose. I argue that the moral language of liberal justice – of rights and duties, interests and opportunities, freedom and consent, equality and fairness – cannot speak to these underlying concerns about what the human embryo is, why the natural lottery matters to us, and whether ‘animal nature’ is worth preserving. I conclude that liberal theory is incapable of furnishing a coherent or desirable account to govern the way we use our emerging powers of biotechnology.     

Inborn errors of metabolism: the flux from Mendelian to complex diseases

Inborn errors of metabolism are characterized by dysregulation of the metabolic networks that underlie development and homeostasis, and constitute an important and expanding group of genetic disorders in humans. Diagnostic methods that are based on molecular genetic tools have a limited ability to correlate phenotypes with subtle changes in metabolic fluxes. We argue that the direct and dynamic measurement of metabolite flux will facilitate the integration of environmental, genetic and biochemical factors with phenotypic information. Ultimately, this integration will lead to new diagnostic and therapeutic approaches that are focused on the manipulation of these pathways.     

Tailored Medicine: Whom Will it Fit? The Ethics of Patient and Disease Stratification

A key selling point of pharmacogenetics is the genetic stratification of either patients or diseases in order to target the prescribing of medicine. The hope is that genetically 'tailored' medicines will replace the current 'one-size-fits-all' paradigm of drug development and usage. This paper is concerned with the relationship between difference and justice in the use of pharmacogenetics. This new technology, which facilitates the identification and use of difference, has, we shall argue, the potential to lead to injustice either by the inappropriate use of difference or through the inappropriate failure to use difference. We build on empirical data from a detailed study of the range of options for the development of pharmacogenetics to present a consideration of the ethical issues that surround patient and disease stratification. In it we explore the ways in which the use of pharmacogenetics may lead to the creation of new, genetically stratified, forms of difference and new forms of injustice based on these divisions. We also examine the ways in which existing forms of difference and social stratification may interact with the use of pharmacogenetics. In conclusion, we suggest how an understanding of these ethical issues could usefully inform future policy discussions.