Use Of Genetic Knowledge Research Articles

Genetics and democracy—what is the issue?

Current developments in genetics and genomics entail a number of changes and challenges for society as new knowledge and technology become common in the clinical setting and in society at large. The relationship between genetics and ethics has been much discussed during the last decade, while the relationship between genetics and the political arena-with terms such as rights, distribution, expertise, participation and democracy-has been less considered. The purpose of this article is to demonstrate the connection between genetics and democracy. In order to do this, we delineate a notion of democracy that incorporates process as well as substance values. On the basis of this notion of democracy and on claims of democratisation in the science and technology literature, we argue for the importance of considering genetic issues in a democratic manner. Having established this connection between genetics and democracy, we discuss this relation in three different contexts where the relationship between genetics and democracy becomes truly salient: the role of expertise, science and public participation, and individual responsibility and distributive justice. As developments within genetics and genomics advance with great speed, the importance and use of genetic knowledge within society can be expected to grow. However, this expanding societal importance of genetics might ultimately involve, interact with, or even confront important aspects within democratic rule and democratic decision-making. Moreover, we argue that the societal importance of genetic development makes it crucial to consider not only decision-making processes, but also the policy outcomes of these processes. This argument supports our process and substance notion of democracy, which implies that public participation, as a process value, must be complemented with a focus on the effects of policy decisions on democratic values such as distributive justice.

Ethical and social issues in nanobiotechnologies

Nanobiotechnologies represent a rapidly growing field of interest. Several European conferences during the past year have highlighted the wide‐ranging potential of applying techniques at the molecular and atomic levels to understand and transform biosystems, and of using biological principles and materials to create new devices at the nanoscale. This convergence of disciplines holds great promise in medicine for improved diagnostics, less invasive monitoring devices and more targeted therapies, and also has potential for agricultural and environmental applications. However, relatively little has been written about the ethical and social implications of this emerging research area. This article seeks to examine some of these questions, and is based on a report produced by the ethical, legal and social advisory (ELSA) board of the Nano2Life European Network of Excellence in Nanobiotechnology (Bruce, 2006). Nano2Life is funded by the European Commission (EC) under the Sixth Framework Programme. It brings together European research groups from 12 countries to collaborate in specific multidisciplinary projects, which combine the life sciences with microtechnologies and nanotechnologies, materials science, physics and chemistry. The aim is to develop new research tools and applications for medical diagnosis and therapy, and for monitoring food safety and environmental health. Seeking to learn from the major controversy in Europe over genetically modified (GM) foods, Nano2Life established—as an integral part of the network—an advisory board to evaluate possible ethical, legal and social implications. Its role is to advise on particular research projects, to educate participating scientists, and to produce a broad overview of the ethical and social issues (Bruce, 2006), which are summarized in this article. The reflections presented here are insights from board members and some participating scientists, and draw on an initial literature survey (Jomann, 2006). A main aim is to make researchers in both academia and industry aware of the broad ethical …

Genetics, disability, and deafness

Pulitzer Prize-winning author Louis Menand begins this wide-ranging volume with an essay that extols diversity and warns of the dangers of modifying the human genome. Nora Groce reviews the ways that societies have defined disability and creates an interpretive framework for discussing the relationship between culture and disability. In essays devoted to historical perspective, Brian H. Greenwald comments upon the real toll taken by A. G. Bell s insistence upon oralism, while Joseph J. Murray weighs the nineteenth-century debate over whether deaf-deaf marriages should be encouraged. John S. Schuchman s chilling account of deafness and eugenics in the Nazi era adds wrenching reinforcement to the impetus to include disabled people in genetics debates. Mark Willis offers an intensely personal reflection on the complexities of genetic alteration, addressing both his heart condition and his blindness in surprisingly different ways. Anna Middleton extends Willis s concepts in her discussion of couples currently considering the use of genetic knowledge and technology to select for or against a gene that causes deafness. In the part on the science of genetics, Orit Dagan, Karen B. Avraham, Kathleen S. Arnos, and Arti Pandya clarify the choices presented by genetic engineering, and geneticist Walter E. Nance emphasizes the importance of science in offering individuals knowledge from which they can fashion their own decisions. In the concluding section, Christopher Krentz raises moral questions about the ever-continuing search for human perfection, and Michael Berube argues that disability should be considered democratically to ensure full participation of disabled people in all decisions that might affect them.

Genetic testing and human autonomy

The author inquires into the relation between the production of genetic knowledge on the one hand, and human autonomy and self-determination on the other. He does so by specifying the notions of “genetic test” and “human autonomy”; by discussing the epistemic status of genetic knowledge, given its importance for the clarification of its anthropological and ethical implications; and by inquiring into some ethical implications by investigating the conditions under which genetic knowledge of the individual may justifiably be established. This discussion shows that the autonomy-based right to self-determination as far as gene information is concerned, is fundamental. This has major implications, which the author identifies with regard to the difficult problem of the moral legitimacy of the use of genetic knowledge in the context of insurance policies.

Airbrushing heritability.

Airbrushing heritability.

Biotech & JUSTICE: Catching up with the Real World Order

Since its inception in 1990, the Human Genome Project has spurred almost as many ethical and social questions as it has start-up biotech companies. Yet one of the most perplexing challenges of the new genomics is how to guide and govern the use of genetic knowledge in an era of economic globalization. Diagnostic and predictive testing, gene-based therapies, pharmacogenomics, and genetic enhancement are already available or speeding toward reality, leading to ever greater levels of private investment and international marketing. Many share Francis Fukuyama's concern about what genomics portends for our posthuman future, (1) and not only because human nature as we have known it may be at stake. Commercial genetics threatens to exacerbate greatly the rising levels of inequality that already burden the globalization age. (2) Two issues are important: first, defining ethics or justice in a pluralistic and often conflicted world; and second, putting ethical relations or social justice into practice. U.S. law, policy, and even philosophy tend to frame social justice questions in terms of individual rights, civil liberties, procedural solutions to conflict, and equality of opportunity. And, frequently, both individuals and organizations in the United States approach the social aspects of genetics by prioritizing freedom and self-determination--of scientists, corporations, consumers, and even of the nation as an international actor with particular values and interests. The focus on liberal rights obscures the social and economic bases of health and disease and the effect on social institutions and patterns of individual choices and enterprise. (3) African, Asian, Latin American, and to an extent European cultures put a higher priority on social and economic rights within a community than they do on privacy and choice. While genetics research and development spans borders and cultures, principles like autonomy and informed consent bear a distinctive legal and cultural stamp. The philosophical framework within which U.S. bioethics addresses the new international context of genetics needs to be restructured, both to expand the basic moral criteria and to consider how ethical behavior, relationships, and institutions can be defined, created, and maintained globally. This essay will argue that bioethics can find resources for this task in political science literature on globalization, on the still weakening sovereignty of the nation-state, and on the quest for a normative and constructive approach to governance in what has been hailed as the new world order. International research ethics and the recent struggle over the availability of AIDS drugs will show how developing models of governance might apply to the control of biotechnology. The Priority of Autonomy According to anthropologist Sandra Lane and colleagues, individualism, so intrinsic to American culture, is a core principle which organizes the practices and representations--the habitus--of the bioethics community. (4) In their view, the analysis of individual decisions has predominated over social relations, community needs and values, and public health. Moreover, self-determination itself has been considered largely in relation to relatively privileged consumers and even a fairly narrow range of exotic or highly technological interventions. The medically marginalized have been neglected. The four bioethical principles of autonomy, non-maleficence, beneficence, and justice, which were first enumerated in the Nuremberg Code and were then adapted in the Belmont Report and in the bioethics literature spanning decades, are more often than not applied at the individual level. Of the four principles, autonomy continues to receive by far the most attention. And while the pressing question of universal access to health care in the United States has raised the profile of distributive justice in recent years, even adding a global perspective, (5) it is still the case that procedural justice, focused on ethical and legal protections of autonomy, privacy, and confidentiality for those receiving health care in the United States, has been the predominant justice concern. …

Ethical Issues in Human Genetics: Genetic Counseling and the Use of Genetic Knowledge

The important issues of ethics pervade these proceedings: What value privacy? Under what circumstances deceive the trusting? Who, among us, is not to count as one of us? Who, and by what authority, ought to determine another's good, another's "acceptable" risks? What is the good (enough) life? Scholars from many disciplines and several nations discuss whether "to introduce the hand of man in the fundamental process of evolution itself," or "how we can manage both to live humanely with genetic disease and yet to conquer it at the same time," or "whether the fetus is in fact a third party whose interests might warrant legal or other intervention in private medical decisions," but the grand questions remain the crucial ones. Some errors, as the expectancy theory of rights, are exposed. Utilitarianism is both accepted and questioned. Some profound issues are posed, then sloughed, eg, the "interchangeability" of individuals presupposed by

Genetic Medicine: Notes on the Moral Literature

THE MORAL literature on genetic controls is enormous. 1 Furthermore, it touches on several different problems with ethical implications: eugenic engineering (both positive and negative), genetic counseling and screening, genetic abortion, in vitro fertilization, cloning, etc. Much of the occasional writing is general in character. The more systematic moral studies on genetics remind one of a masked ball: new disguises but behind them familiar faces. The familiar faces in this instance refer to the methodologies of well-known theologians on the (especially) American scene. Hence, even in the face of the exciting and/or frightening possibilities of contemporary biomedicine, there is a lingering sense of deja vu in the moral literature. Briefly, since ultimate attitudes and judgments vis-a-vis various genetic interventions depend heavily on how the author builds his approach, the emphasis falls heavily on methodology. Three approaches are discernible: a consequentialist calculus, a more deontological attitude, a mediating approach. 1 Literature of the 1960's can be found in Rosalind P. Petchesky's Issues in Biological Engineering, ISHA Bulletin no. 7 (Institute for the Study of Science in Human Affairs; New York: Columbia Univ., 1969). Cf. also THEOLOGICAL STUDIES 30 (1969) 680-92, where I review the recent periodical literature. This literature will not be reviewed here. Another valuable bibliographical source is Sharmon Sollitto's In the Literature, which appears regularly in the Report of the Hastings Center. 2 A conference at Airlie House, Va. (Oct. 10-14, 1971) was devoted to Issues in Genetic Counselling and the Use of Genetic Knowledge. It dealt heavily with counseling, screening, and abortion. The papers, currently in the process of publication, include thoughtful essays by Daniel Callahan, Paul Ramsey, James Gustafson, Leon Kass, and John Fletcher. For a brief report of this conference, cf. W. G. Peter, Perspectives in the Use of Genetic Knowledge, BioScience 21 (Nov. 15, 1971) 1133-37. 3 Cf., e.g., Donald Huisingh, Should Man Control His Genetic Future? Zygon 4 (1969) 188-99; S. E. Luria, Modern Biology: A Terrifying Power, Nation 209 (1969) 406 ff.; Kenneth Vaux, Cyborg, R. U. Human? Ethical Issues in Rebuilding Man, Religion in Life 39 (1970) 187-92. Articles of this kind abound in the medical journals and journals such as Science and Science News. Cf., e.g., New York Times Magazine, March 5, 1972, pp. 10 ff. 4 The very problems theologians decide to discuss are important, for a false move here could bring theology and its important contributions to biomedical decisions into disrepute with the scientific world. Furthermore, too great a futurism would allow existing problems to get solved by default. The matter is complicated by the fact that theologians are at the mercy of the scientific world in deciding what problems are realistic and this very world gives ambiguous answers. For instance, James D. Watson reports of

Ethical Perspectives in the Use of Genetic Knowledge

Ethical Perspectives in the Use of Genetic Knowledge