Genetic Ethics, Misc

My focus in this paper is the question of the moral acceptability of attempts to modify the human genome. Much of the debate in this area has revolved around the distinction between supposedly therapeutic modification on the one hand, and eugenic modification on the other. In the first part of the paper I reject some recent arguments against genetic engineering. In the second part I seek to distinguish between permissible and impermissible forms of intervention in such a way that does (...) not appeal to the therapeutic/eugenic distinction. If I am right much of what we would intuitively call eugenic intervention will be morally acceptable. Central to my argument is an asymmetry in the way genetic engineers can influence a person's capacities on the one hand and life‐goals on the other. Forms of genetic intervention that have a high probability of producing a mismatch of life‐goals and capacities will be ruled out. (shrink)

In this study, we present a cost-sharing rule for cost-sharing problems. This rule prescribes the same allocations in a problem and in its dual one. Moreover, in some specific problems it gives the same allocations as the serial cost-sharing rule (Moulin and Shenker, Econometrica, 60, 1009–1037, 1992) does in a related problem. That is why we call it as the self-dual serial cost-sharing rule. We give two axiomatizations of this new rule and another one for the serial cost-sharing rule.

The role genetic inheritance plays in the way human beings look and behave is a question about the biology of human sexual reproduction, one that scientists connected with the Human Genome Project dashed to answer before the close of the twentieth century. This is also a question about politics, and, it turns out, poetry, because, as the example of Lucretius shows, poetry is an ancient tool for the popularization of science. "Popularization" is a good word for successful efforts to communicate (...) elite science to non-scientists in non-technical languages and media. According to prominent sociobiologist E. O. Wilson, "sexual dominance is a human universal." He meant, of course, that men dominate women. Like sociobiology, genetic science is freighted with politics, including gender politics. Scientists have gender perspectives that may color what they "see" in nature. As the late Susan Okin Miller suggested in an unpublished paper tracing the detrimental impact of Aristotle's teleology on Western thought, scientists accustomed to thinking that men naturally dominate women might interpret genetic discoveries accordingly. Biologists have good, scientific reasons to fight the effects of bias. One must be critical of how scientists and popularizers of science, like "Genome" author Matt Ridley, frame truth and theory. Ridley's "battle of the sexes" metaphor and others have a doubtful place in serious explanations of science. (shrink)

Vulnerable populations have been defined as those who face a significant probability of incurring an identifiable harm while substantially lacking ability and/or means to protect themselves. Vulnerabilities within population groups can be differentiated by factors that determine the different probabilities of incurring identifiable harms people face and the means available to them to protect themselves . Among these factors is gender.

ABSTRACTMany ethical concerns surrounding human genetics studies remain unresolved. We report here the situation in Cameroon.Objectives: To describe the profile of human genetic studies that used Cameroonian DNA samples, with specific focus on i) the research centres that were involved, ii) authorship, iii) population studied, iv) research topics and v) ethics disclosure, with the aim of raising ethical issues that emerged from these studies.Method: Bibliometric Studies; we conducted a PubMed‐based systematic review of all the studies on human genetics that used (...) Cameroonian DNA samples from 1989 to 2009.Results and Discussion: Fifty articles were identified, involving predominantly research centres from Europe and America . Only 7 Cameroonian institutions and 14 Cameroonian authors were associated with these publications.At least 52% of publications were devoted to population genetics amongst 30 Cameroonian ethnic groups. Very few studies concerned public health related genetic issues and only 5 references were found for hemoglobinopathies like sickle cell anaemia. Almost all DNA samples are ‘banked’ outside of the African continent.Capacity building, rights to the genetic information and benefits to the individuals, communities and populations who contribute to these studies are addressed.Conclusions: 1) Our data suggests the need for a wider debate towards building capacity and addressing ethical issues related to human genomic research in sub‐Saharan Africa and specifically in Cameroon; 2) National ethical guidelines and regulations concerning the collection, use and storage of human DNA are urgently needed in Cameroon. (shrink)

Patents have been issued in the United States for genes and gene sequences since 1980. Patent protection has provided incentives to aggressively probe the genome of humans and non-humans alike in search of profitable applications. Yet it is not clear that patent protection should have been afforded to genes and gene sequences and it is increasingly clear that patent protection, as currently formulated, is not an appropriate means to realize the full benefits of genetic research. As we stand on the (...) threshold on a genetically enhanced future, in which we shall have the power to consciously steer our evolution as a species, we need to carefully consider how to shape the benefits of genetic research and how to recognize and contain its detriments. (shrink)

The essays in this volume apply philosophical analysis to address three kinds of questions: What are the implications of genetic science for our understanding of nature? What might it influence in our conception of human nature? What challenges does genetic science pose for specific issues of private conduct or public policy?

This paper offers a different pragmatic and patent-based approach to concerns regarding the negative effects of genetic-based patenting on advancing scientific research and providing adequate and accessible health care services. At the basis of this approach lies an explication of a mandatory provisional patented paper procedure (PPPA), designed for genetic-based patents and administered by leading scientific journals in the field, while officially acknowledged by the USPTO, and subsequently by other patent offices as well. It is argued that the uniqueness of (...) PPPAs lies in subsequently mitigating the negative ramifications of genetic patents on scientific research and genetic-based health care services, while basing such mitigation on a patents’ advocate viewpoint that neither discards the patent system nor jeopardizes its integrity. (shrink)

The properties of DNA -- DNA as universal property -- DNA as intellectual property -- DNA as national property -- DNA as personal property -- DNA as academic property -- DNA as taxable propety.

ABSTRACTIn this article, we will first give a historic overview of the concept of benefit sharing and its appearance in official agreements, particularly with respect to crop genetic resources. It will become clear that, at present, benefit sharing is primarily considered as an instrument of compensation or exchange, and thus refers to commutative justice. However, we believe that such a narrow interpretation of benefit sharing disregards, and even undermines, much of its content and potency, especially where crop genetic resources are (...) concerned. We argue that benefit sharing should not be based merely on commutative justice but rather on a broader model that is also grounded in the concept of distributive justice. This has repercussions for the application of benefit sharing, which we try to clarify by distinguishing between downstream and upstream benefit sharing. Upstream benefit sharing is not so much inspired by compensation for actions done, or the distribution downstream of benefits developed, but by the idea of shared decision‐making on the research and development of resources fundamental to human welfare. Going upstream in the research process of crop genetic resources, and determining research agendas and improving crops according to the needs of the poor, benefit sharing may well be a tool to contribute to world food security and global justice. We concretize our ideas on upstream benefit sharing by introducing a set of criteria that determine the success of consultations on agricultural research agenda setting. (shrink)

This special issue of the Modern Law Review addresses a range of key issues - conceptual, ethical, political and practical - arising from the regulatory ...

In this revised edition with a new preface from the editor, leading scientists explain the nature and goals of `test tube' reproduction and genetic engineering, and their eugenic implications. In contrast to the Warnock report, the extended commentary considers the issues in the context of a social ethic rather than the individualist viewpoint.

Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.

Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...) disclosing a select range of genetic results to the relatives of research participants who have died, developed in response to relatives? requests during a pilot study of large-scale medical genetic sequencing. We also argue that studies that disclose individual research results to participants should, at a minimum, passively disclose individual results to deceased participants? relatives. (shrink)

Despite criticism that dignity is a vague and slippery concept, a number of international guidelines on bioethics have cautioned against research that is contrary to human dignity, with reference specifically to genetic technology. What is the connection between genetic research and human dignity? In this article, I investigate the concept of human dignity in its various historical forms, and examine its status as a moral concept. Unlike Kant's ideal concept of human dignity, the empirical or relational concept takes human dignity (...) as something that is affected by one's circumstances and what others do. I argue that the dignity objection to some forms of genetic research rests on a view of human nature that gives humans a special status in nature – one that is threatened by the potential of genetic research to reduce individuals to their genetic endowment. I distinguish two main philosophical accounts of human nature. One of these, the Aristotelian view, is compatible with the use of genetic technology to help humans realize their inherent potential to a fuller extent. (shrink)

The ethics of gene patenting is concerned with whether human genes are the kind of thing that is appropriate for patenting, and whether it is ethical to do so. Is genetic technology a special case compared to other medical technology that have been patented? Much of the debate has revolved around the benefits and harms of allowing gene sequences to be patented. In this paper, I am concerned with a non-consequential consideration: Can someone patent my genes? If genes are the (...) common property of humankind, are genes patentable? I present an objection to the patenting of processes used to manipulate our genes that have the potential to change human nature. Should not all members of the human species have a say regarding genetic engineering that can be used to irreversibly change what makes each one a human? I conclude with an examination of how genetic research may be democratically controlled. (shrink)

The main research question of this thesis is: How can cross-border access to human genetic resources, such as blood or DNA samples, be governed to achieve equity for developing countries? Access to and benefit sharing for human biological resources is not regulated through an international legal framework such as the Convention on Biological Diversity, which applies only to plants, animals and micro-organisms as well as associated traditional knowledge. This legal vacuum for the governance of human genetic resources can be attributed (...) (in part) to the concern that benefit sharing might provide undue inducements to research participants and their communities. This thesis shows that: (a) Benefit sharing is crucial to avoiding the exploitation of developing countries in genomic research. (b) With functioning research ethics committees, undue inducement is less of a concern in genetic research than in other medical research (e.g. clinical trials). (c) Concerns remain over research involving indigenous populations and some recommendations are provided. In drawing its conclusions, the thesis resolves a highly pressing topic in global bioethics and international law. Originally, it combines bioethical argument with jurisprudence, in particular reference to the law of equity and the legal concepts of duress (coercion), unconscionable dealing, and undue influence. (shrink)

The book discusses some of the stages in the development of genetics, biotechnology in terms of basic strategy of humanity towards the formation of a modern agrarian civilization. Agricultural civilization is seen as part of the biosphere and primary user of its energy flows. Consistently a steps of creation of management tools for live objects to increasing the number of food security of mankind are outlines. The elements of the biosphere degradation started in the results of human activities, and the (...) ways of their compensation. are discussed.The importance of the cooperation of experts in different areas of knowledge in the development of new approaches to the management of genetic resources of the planet is discussed too. (shrink)

The theory of evolution of complex and comprising of human systems and algorithm for its constructing are the synthesis of evolutionary epistemology, philosophical anthropology and concrete scientific empirical basis in modern (transdisciplinary) science. «Trans-disciplinary» in the context is interpreted as a completely new epistemological situation, which is fraught with the initiation of a civilizational crisis. Philosophy and ideology of technogenic civilization is based on the possibility of unambiguous demarcation of public value and descriptive scientific discourses (1), and the object and (...) subject of the cognitive process (2). Both of these attributes are no longer valid. For mass, everyday consciousness and institutional philosophical tradition it is intuitively obvious that having the ability to control the evolutionary process, Homo sapiens came close to the borders of their own biological and cultural identity. The spontaneous coevolutionary process of interaction between the «subject» (rational living organisms) and the «object» (material world), is the teleological trend of the movement towards the complete rationalization of the World as It Is, its merger with the World of Due. The stratification of the global evolutionary process into selective and semantic (teleological) coevolutionary and therefore ontologically inseparable components follows. With the entry of anthropogenic civilization into the stage of the information society, firsty, the post-academic phase of the historical evolution of scientific rationality began, the attributes of which are the specific methodology of scientific knowledge, scientific ethos and ontology. Bioethics as a phenomenon of intellectual culture represents a natural philosophical core of modern post- academic (human-dimensional) science, in which the ethical neutrality of scientific theory principle is inapplicable, and elements of public-axiological and scientific-descriptive discourses are integrated into a single logic construction. As result, hermeneutics precedes epistemology not only methodologically, but also meaningfully, and natural philosophy is regaining the status of the backbone of the theory of evolution – in an explicit form. (shrink)