The right to genetic ignorance confirmed

One of the much debated issues around the evolving human genetics is the question of the right to know versus the right not to know. The core question of this theme is whether an individual has the right to know about her own genetic constitution and further, does she also have the right to remain in ignorance. Within liberal traditions it is usually held that people, if they so wish, have the right to all the knowledge available about themselves. This right is based on the value of autonomy or on the right of self-determination, and it is sometimes partly justified as a countermeasure to the authorities' control over people. I do not wish to deny the right to genetic knowledge (about oneself). I think that its existence is self-evident. The argument I want to put forth in this paper is that in liberal societies we should acknowledge people's right to remain in ignorance as well. The only reason for not doing this would be that grave harm to others would follow if people were allowed to make these seemingly self-regarding decisions. Arguments presented against the right to ignorance are twofold. First there are those arguing against the right to ignorance on the grounds of harm to others, that is, philosophers who do not deny people's right to ignorance in self-related matters but wish to state that genetic ignorance causes harm to others, and this is one of the most commonly accepted reason for restricting people's freedom. The other line of argument flows from the Kantian view that not even merely self-regarding foolishness (in the eyes of others) should be allowed.     

Conscientious Objection in Healthcare Provision: A New Dimension

The right to conscientious objection in the provision of healthcare is the subject of a lengthy, heated and controversial debate. Recently, a new dimension was added to this debate by the US Supreme Court's decision in Burwell vs. Hobby Lobby et al. which effectively granted rights to freedom of conscience to private, for‐profit corporations. In light of this paradigm shift, we examine one of the most contentious points within this debate, the impact of granting conscience exemptions to healthcare providers on the ability of women to enjoy their rights to reproductive autonomy. We argue that the exemptions demanded by objecting healthcare providers cannot be justified on the liberal, pluralist grounds on which they are based, and impose unjustifiable costs on both individual persons, and society as a whole. In doing so, we draw attention to a worrying trend in healthcare policy in Europe and the United States to undermine women's rights to reproductive autonomy by prioritizing the rights of ideologically motivated service providers to an unjustifiably broad form of freedom of conscience.     

Sharing Research Data and Intellectual Property Law: A Primer

Sharing research data by depositing it in connection with a published article or otherwise making data publicly available sometimes raises intellectual property questions in the minds of depositing researchers, their employers, their funders, and other researchers who seek to reuse research data. In this context or in the drafting of data management plans, common questions are (1) what are the legal rights in data; (2) who has these rights; and (3) how does one with these rights use them to share data in a way that permits or encourages productive downstream uses? Leaving to the side privacy and national security laws that regulate sharing certain types of data, this Perspective explains how to work through the general intellectual property and contractual issues for all research data.For the researcher seeking to use another’s data, this Perspective offers some good news and some not as good news. The good news is that if a source of data—the researcher or repository—gives permission to reuse the data and one’s intended use fits within the scope of the permission, one need not be overly concerned with the details of the discussion that follows because the permission provides the legal basis for data reuse. For example, if one seeks data from the European Bioinformatics Institute, one will find that the terms of use state that “[t]he public databases of EMBL-EBI [The European Molecular Biology Laboratory-The European Bioinformatics Institute] are freely available by any individual and for any purpose” [1]. This would appear to give any individual academic researcher permission to copy and reuse the data at will. It leaves open a question about whether an employee acting on behalf of his or her employer (is s/he acting as “an individual”?) is equally granted this permission.There is, however, a catch. The EBI’s terms also warn the user that some third parties may claim intellectual property or other legal rights on the original data, and it is up to the researcher not to infringe these rights. This kind of legal uncertainty interferes with the productive reuse of research data. It can be avoided if the repository requires depositors to grant permission to downstream users or to give up any intellectual property rights they may have in the data. Alternatively, the final section of this Perspective describes means by which repositories can make it easy for depositors to signal the scope of the permission they grant to downstream users.In the absence of clear permission, mapping how intellectual property law does—and does not—apply to research data may be of use. In my view, the law makes all of this far more complicated than it need be. For those seeking to pick and choose which reuses of another’s data may be permitted by law, regrettably, the answers to the above questions are more context dependent than many would like.This is so for two reasons. First, the source of all intellectual property rights is national law. Certain international treaties harmonize intellectual property owners’ rights but leave the users’ rights to vary by country. Second, certain countries have added protection beyond what the treaties require. Specifically, the members of the European Union, candidate countries in Eastern Europe, Mexico [2], and South Korea have created a specialized database right that applies to certain databases created or maintained within their borders. These laws regulate uses of these databases only within their borders.     

Dementia and legal competency

The legal competency or capability to exercise rights is level of judgment and decision-making ability needed to manage one's own affairs and to sign official documents. With some exceptions, the person entitles this right in age of majority. It is acquired without legal procedures, however the annulment of legal capacity requires a juristic process. This resolution may not be final and could be revoked thorough the procedure of reverting legal capacity - fully or partially. Given the increasing number of persons with dementia, they are often subjects of legal expertise concerning their legal capacity. On the other part, emphasis on the civil rights of mentally ill also demands their maximal protection. Therefore such distinctive issue is approached with particular attention. The approach in determination of legal competency is more focused on gradation of it's particular aspects instead of existing dual concept: legally capable - legally incapable. The main assumption represents how person with dementia is legally capable and should enjoy all the rights, privileges and obligations as other citizens do. The aspects of legal competency for which person with dementia is going to be deprived, due to protection of one's rights and interests, are determined in legal procedure and then passed over to the guardian decided by court. Partial annulment of legal competency is measure applied when there is even one existing aspect of preserved legal capability (pension disposition, salary or pension disposition, ability of concluding contract, making testament, concluding marriage, divorce, choosing whereabouts, independent living, right to vote, right to decide course of treatment ect.). This measure is most often in favour of the patient and rarely for protection of other persons and their interests. Physicians are expected to precisely describe early dementia symptoms which may influence assessment of specific aspects involved in legal capacity (memory loss, impaired task execution, language difficulties, loosing perception of time and space, changes in mood and behaviour, personality alterations, loss of interests and initiative). Towards more accurate determination of legal competency the psychometric tests are being used. The appliance of these tests must be guided with basic question during evaluation: "For what is or is not he/she capable?" In prediction of possible dementia development, the modern diagnostic procedures are used as help for potentially demented individuals in order to plan own affairs and by oneself determine future guardian. This ensures the maximal respect and protection of rights among persons with dementia in order to independently manage life one step ahead of progressive illness. Finally, it is to be distinguished medical concept of legal capacity which is universal and judicial concept which is restricted by rules of national legal system differing from country to country.     

The Politics of the Gap: Indigenous Australians, Liberal Multiculturalism, and the End of the Self-Determination Era

ABSTRACT  Since the 1970s, "self-determination" has been the dominant trope for expressing national aspirations for Indigenous Australians. Through the principles of self-determination, the liberal multicultural state has attempted to deliver postcolonial justice to its first peoples. In this new century, the sheen of the self-determination era has faded. Once heralded as the antidote to the racist assimilation era, it is now depicted as the cause of social ills. In this article, I draw on an ethnographic study of White antiracists working in Indigenous health in northern Australia to analyze the brand of liberal rationality that dominated the discourse of the self-determination era. By engaging with a "tribe" of White people who identify with the aims of the self-determination era, we can decipher the logic of self-determination as an instrument of the liberal state and better understand the internal contradictions and ambiguities that have led to its recent demise.     

New concepts in the law of the sea

Abstract

Current ocean law negotiations reflect conflicts between two old and competing approaches: the view that the coastal state should control activities in any large adjacent ocean area, and the view that most of the ocean should be left open to the free use of all nations. Both approaches are laissez‐faire, leave the distribution of benefits to arbitrary factors, and are based on national exclusivity. In the negotiations this conflict is exhibited in competing claims regarding navigation, mineral resources, fishing, environmental protection, and strategic uses. A possible resolution has emerged in the concept of the whole ocean as a common resource of humankind, according to which no individual state has a right to benefit from the ocean except pursuant to arrangements sanctioned by the community, and rights to benefit are determined not arbitrarily but by membership in the community. The regime now likeliest to be produced by such an approach includes (1) a narrow territorial sea and various navigation guarantees, (2) a wide coastal band coupling coastal state managerial functions with permanent international prerogatives, and (3) purely international manage‐ment of the deep seabed.     

The Legal Status and Operation of Unmanned Maritime Vehicles

The number of unmanned maritime vehicles (UMVs) and their potential applications in the marine space are growing constantly. Because of their comparatively small size and limited operations, only modest attention has been paid to how they fit into the international legal framework. Many UMVs may not be considered to fall under the definition of "ship" so as to enjoy states' rights of navigation under UNCLOS. Therefore states, manufacturers, and investors remain uncertain about the rights and obligations regarding UMV operations in the various maritime zones. This article addresses these questions for a range of UMVs with differing levels of autonomy. It argues that the international legal framework delegates the question of whether a UMV is a ship or not to the flag state's national laws. The article suggests that such a determination will be binding on other states. With respect to UMVs that do not fall under the definition of ship, there is remaining uncertainty about whether any navigational rights in the jurisdictional zones of other states are available, while it is argued that such rights do exist in the areas beyond national jurisdiction. The article also considers the extent to which today's UMVs can comply with the international framework for ensuring safety at sea. For those UMVs falling under the definition of ship, compliance with the current regulatory framework for shipping is required and compliance will be more difficult as the level of UMV autonomy increases.     

Military Uses of Ocean Space and the Law of the Sea in the New Millennium

Military uses of ocean space consist of both movement rights and operational rights. Only movement rights, which include all rights associated with the mobility of seaborne forces, were codified in the LOS Convention. Operational rights, on the other hand, are primarily customary rights that are governed by the regime of freedom of the seas and defended by the naval power of the United States. This article begins by examining freedom of the seas as a principle of international law, as a bundle of user rights, and as a doctrine. It next examines the major challenges to freedom of the seas in terms of a construct called controlled access. After summarizing the major historical elements of controlled access, the article closes with a brief analysis of the threats to freedom of the seas for military purposes that are posed by multipolarity, the shift in U.S. naval strategy from the open seas to the coastal littorals, and in the withering away of U.S. naval superiority. The major arguments advanced throughout the article are that military uses of ocean space are hegemonic in nature, that their preservation depends on clear maritime superiority, and that they will come under increasing challenge and restriction as the balance of power at sea shifts from unipolarity to multipolarity by the middle of the new millennium.     

Hospital Medical Staff By-laws: An Instrument for Self-Government

Hospital medical staff by-laws are important. By them the governing board of a hospital can and does confer on the medical staff the power to set up a form of organization by which that staff can give assurance of quality hospital medical care. The form of medical staff organization is patterned on familiar concepts of democratic self-government as we know it on this continent. Within the ordered society of the hospital medical staff, as in society at large, there is control of citizenship, classification of citizens as to their citizen rights, licence to do differing kinds of work, election of representatives, definition of rules for conduct, application of the cabinet principle, law enforcement by appointed judges, the right of appeal and, importantly, incentive for voluntary effort. Traditional professional freedom, self-determination and voluntary association of colleagues are guarded by this method of hospital conduct which is unique to the voluntary hospital system on this continent. Knowledge of the democratic process and of the motivation required to make it work well are essential for its preservation.     

Should there be property rights in genes?

This paper deals with the following questions. Are there property rights in the human body or its parts? What legal control is, or should be, available in respect of genetic material? Can, or should, patents be granted for genes or for products incorporating human genetic material? How extensive are patent rights over genetic material? Should ethical matters be a critical part of the patent granting process?     

Ethnic Minorities and the Case for Collective Rights

This essay reviews current debates in philosophical liberalism and international law concerning "collective" or group rights and argues that, under certain circumstances, they should be recognized as a means of protecting and preserving ethnic minority cultures from various actions and policies pursued by the states in which they reside. A classification of different ethnic minorities and the rights that adhere to them are suggested. Anthropologists are urged to address rights issues in their writings and provide the ethnographic grounding that is often lacking in discourses on collective rights.     

Transit rights and U.S. security interests in international straits: The “straits debate”; revisited

Abstract

The issue of transit rights through international straits overlapped by an extension of territorial seas to 12nm was the focal point of intense debate between the United States and straits states during the formative stages of UNCLOS III. Even though the ICNT provisions on transit through straits reflect basic U.S. navigation and security interests, this paper argues that the issue of transit rights through straits is not a dead issue. Straits states may either refuse to ratify a LOS treaty incorporating ICNT provisions on transit passage, or the attempts to obtain a comprehensive LOS treaty may end in failure. In either case, the United States may be forced to accept a right of innocent passage through international straits. The conclusions of this paper are that the security of transit will be determined by political rather than legal considerations, and that U.S. security interests in straits are not undermined by a right of innocent passage.     

Biologie et politique IV. — Questions d'éthique

Within the framework of the increasing development of techniques and technology, Humankind is often considered and used as an instrument. Because power from the industry can generate bad consequences that are unforeseeable and thus out of a comprehensive control, new thoughts on Mankind and its values are needed. The moral code gives the practical distinction between good and evil. Ethics calls to a reflection from free, reasonable and responsible beings. Numerous groups of thoughts working for a progressive emergence of universally admitted ethic rules that should allow the offer of an international right of ‘Human rights’ are now available at different levels, i.e. professional, national, international. From the biomedical ethic, it appears that Human beings, considered as biological entities, have the right to live, that the embryo must not be used as an usual research material and that the diagnostic of embryos before implantation must be exceptional. Human being has a right to dignity. This means that one must not be submitted to degrading treatments (torture, slavery, …), must have access to health care, must not constitute an experimental object, the germinal cells must not be manipulated and neither his body or its constituting elements must ever be commercialised or patented. Corpses need respect and any attack to their integrity (in order to extract profits for public health, science, justice…) must be justified. A person, defined here as a self-awa-reness constructed in function of other persons, must be free (i.e. his consent is absolutely needed for a diagnostic or experimental treatment) and has economical, social and cultural rights. French laws do not permit a person to choose his death The international law progressively refines a definition of crime against humanity (ethnic extinction, torture, rape…). In the ethics for environment, the respect of men towards animals considered as individuals and species in the framework of the conservation of the nature and genetics resources, is taken into account rather than the rights of animals per se. Finally, an arsenal of agreements, directives and legislation at local, national and international levels attempts to harmonise the practices of the technoscience with the concept of long lasting development, in order to maintain the higher-order balances within ecosystems. Mankind felt itself responsible of the environment for the future generations. Nevertheless, any regulation in the matter of ethic remains a compromise within contradictory views. The only general rule for every one, remains not to harm others, and to give oneself to others. This is, for long time, the traditional basis of religious preachments, although its success remains relatively controversial.     

Custom In The Courtroom, Law In The Village: Legal Transformations In Papua New Guinea

After more than twenty-five years on the legal landscape of Papua New Guinea, 'customary law' is ripe for reassessment, particularly as it appears to be an ideal mechanism with which the Papua New Guinean state can meet some of its obligations to a burgeoning body of international law. This article addresses the need to understand customary law in the context of its varying usage across different legal domains in an archetypally pluralistic state. In contrast to older approaches focusing on the problematic interface between an exogenous legal system and indigenous methods of dispute settlement, my concern is with the ways in which these distinct legal forms have fared in each other's company since independence in 1975. Case-studies from a village court and an urban national court demonstrate that village court magistrates and high court judges alike use custom and law as strategic sources of authority. While village courts take custom for granted and therefore must 'discover' law, high courts take law for granted and must 'discover' custom. These processes indicate that, rather than being hybridized as 'customary law', the distinctiveness of custom and law are often maintained in order for one to appear as a resource upon which the other can draw.     

Unheard voices: state-making and popular participation in post-Ottoman Iraq

I explore the nature of the particular nation state form that came into being in Iraq during the British Mandate, and in particular its impact on minorities. The Mandate government, and the broader international legal framework, structured state–minority relations in post-Ottoman Iraq in ways that continue to shape Iraqi politics. While sociocultural differences in Iraqi society were given constitutional recognition, this did not lead to the effective protection of minority rights, primarily because the principle of popular participation was not respected. The Mandate legacy in Iraq has been long-lasting, as the mistakes of the past have been reproduced by postcolonial regimes, and thus the state–minority relationship has been locked in a loop of exclusionary politics and securitization.     

A human rights approach to an international code of conduct for genomic and clinical data sharing

Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved more comprehensively and quickly by combining large, information-rich datasets from across conventionally siloed disciplines and geographic areas. While collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, we lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects so as to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. Governance tools can be used to responsibly steer the sharing of data for proper stewardship of research discovery, genomics research resources, and their clinical applications. In this article, we propose that an international code of conduct be designed to enable global genomic and clinical data sharing for biomedical research. To give this proposed code universal application and accountability, however, we propose to position it within a human rights framework. This proposition is not without precedent: international treaties have long recognized that everyone has a right to the benefits of scientific progress and its applications, and a right to the protection of the moral and material interests resulting from scientific productions. It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing.     

The contingency of ‘rights’: Locating a global discourse in Aboriginal Central Australia

The United Nations Declaration on the Rights of Indigenous Peoples was adopted by the United Nations (UN) General Assembly in 2007 and endorsed by the Australian Labor government two years later. This achievement is an essential element in the global politics of Indigenous recognition and includes unique rights, such as the right to a cultural collectivity and Indigenous Cultural and Intellectual Property, while reinforcing the right to self‐determination. Yet this new Indigenous rights regime is both underpinned and constrained by the UN human rights system, the implications of which include constraint within a secular neo‐imperialist liberal paradigm. However, this human rights paradigm can also offer generative potential to challenge existing relations of power. According to Kymlicka, the UN's system of human rights has, after all, been ‘one of the great moral achievements of the twentieth century’. How can these tensions between the aspirations to universal secularism and the right to culture, for instance, be accommodated within the Indigenous human rights discourse? And how does this new international legal and norm‐setting instrument speak to the glaring disjunct between declaration of rights and social fact in central Australia, the focus of this research? The move toward an anthropology of human rights looks squarely at this conundrum and attempts to locate spaces of continuity and co‐option or, conversely, subversion and rejection as local cultures of human rights are articulated.     

HUMAN REPRODUCTIVE CLONING: A CONFLICT OF LIBERTIES

Proponents of human reproductive cloning do not dispute that cloning may lead to violations of clones' right to self-determination, or that these violations could cause psychological harms. But they proceed with their endorsement of human reproductive cloning by dismissing these psychological harms, mainly in two ways. The first tactic is to point out that to commit the genetic fallacy is indeed a mistake; the second is to invoke Parfit's non-identity problem. The argument of this paper is that neither approach succeeds in removing our moral responsibility to consider and to prevent psychological harms to cloned individuals. In fact, the same commitment to personal liberty that generates the right to reproduce by means of cloning also creates the need to limit that right appropriately. Discussion of human reproductive cloning ought to involve a careful and balanced consideration of both the relevant aspects of personal liberty – the parents' right to reproductive freedom and the cloned child's right to self-determination.     

Access to essential medicines: a Hobbesian social contract approach

Medicines that are vital for the saving and preserving of life in conditions of public health emergency or endemic serious disease are known as essential medicines. In many developing world settings such medicines may be unavailable, or unaffordably expensive for the majority of those in need of them. Furthermore, for many serious diseases (such as HIV/AIDS and tuberculosis) these essential medicines are protected by patents that permit the patent-holder to operate a monopoly on their manufacture and supply, and to price these medicines well above marginal cost. Recent international legal doctrine has placed great stress on the need to globalise intellectual property rights protections, and on the rights of intellectual property rights holders to have their property rights enforced. Although international intellectual property rights law does permit compulsory licensing of protected inventions in the interests of public health, the use of this right by sovereign states has proved highly controversial. In this paper I give an argument in support of states' sovereign right to expropriate private intellectual property in conditions of public health emergency. This argument turns on a social contract argument for the legitimacy of states. The argument shows, further, that under some circumstances states are not merely permitted compulsory to license inventions, but are actually obliged to do so, on pain of failure of their legitimacy as sovereign states. The argument draws freely on a loose interpretation of Thomas Hobbes's arguments in his Leviathan, and on an analogy between his state of War and the situation of public health disasters.     

"Land, Water, and Truth": San Identity and Global Indigenism

San peoples of southern Africa followed two very different trajectories through the 20th century. For some groups, colonial rule and apartheid meant segregation on geographically remote homelands (or in game parks); for the majority of San, however, they meant incorporation as a landless underclass of farm laborers, domestic servants, and squatters. This bifurcated history now presents obstacles to the recognition of a nascent pan–San identity as the contemporary San join other indigenous peoples in struggles over land rights, control over natural resources, and political voice in national and international arenas. This article discusses some of the ways in which international models of indigenism have colluded with essentialist conceptions of culture and ethnicity to (1) prevent the recognition of the San peoples' cultural identity, as it is shaped by their various historical experiences and socioeconomic conditions, and (2) distort the understanding of San claims for land and natural resources by transforming San struggles for social and economic justice into demands for "cultural preservation." [Keywords: indigenous peoples, San, southern Africa, social movements, cultural politics]