Genetic Dilemmas and the Child\u27s Right to an Open Future

1997

Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability-for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is better recast as a conflict between parental autonomy and the child's future autonomy.

Theoretical medicine and bioethics, 2001

Rights, autonomy, privacy, and confidentiality are concepts commonly used in discussions concerning genetic information. When these concepts are thought of as denoting absolute norms and values which cannot be overriden by other considerations, conflicts among them naturally occur. In this paper, these and related notions are examined in terms of the duties and obligations medical professionals and their clients can have regarding genetic knowledge. It is suggested that while the prevailing idea of autonomy is unhelpful in the analysis of these duties, and the ensuing rights, an alternative reading of personal self-determination can provide a firmer basis for ethical guidelines and policies in this field.

Science, 1994

2014

2012

The author addresses the ethical issues in human genetics by focusing on: (1) genetic research, (2) clinical practices, and (3) the implications for ecclesial communities. Genetic research benefits from contributions of many disciplines, from history and anthropology to environmental sciences–as it is highlighted by discussing one genetic disease that affects an ethnic group (the Navajo in the USA). In the clinic, genetics raises ethical issues that encompass: diagnosis (testing and screening), prevention (preimplantation genetic diagnosis and prenatal genetic testing), counseling, therapy, and the property of genetic materials. Finally, to help the people in the pews, the ethical agenda should stimulate a greater awareness, promote the ability to address tensions, aim at healing, and facilitate participation.

A great biochemist Erwin Chargaff, who discovered the parity theory of the DNA bases, once made a critical remark on the newly developed discipline of bioethics: "A fashion is going around the world, the fashion of bioethics. All the powers have entered into a holy hypocritical alliance with this fashion". With this remark, a parody of the first two sentences of Karl Marx's Communist Manifesto, Chargaff intended to point out the weakness of bioethics. Despite his skeptical views of bioethics, there are experts who discuss activities of biotechnology and grant the approval to the result of its research, including the bioethicists from genetic engineering companies like Monsanto and Movartis. Present article is an attempt to look into some relevant issues of genetics and ethics that defy our solution, especially with reference to the third world societies.

The American Journal of Bioethics, 2014

2007

In the present paper, we focus on the role that the concept of geneticization has played in the discussion about health care, bioethics and society. The concept is discussed and examples from the evolving discourse about geneticization are critically analyzed. The relationship between geneticization, medicalization and biomedicalization is described, emphasizing how debates about the latter concepts can inspire future research on geneticization. It is shown how recurrent themes from the media coverage of genetics portray typical traits of geneticization and thus contribute to the process. We look at examples of small-scale studies from the literature where geneticization of medical practice has been demonstrated. Methodological disputes about the relevance of empirical evidence for the geneticization thesis and the normative status of the concept are discussed. We consider arguments to the effect that ideas from mainstream bioethics have facilitated geneticization by emphasizing individualistic notions of autonomy and responsibility while ignoring the role of genetics in the wider social context. It is shown how a concept like geneticization, which can be used to draw the attention of philosophers, social scientists and others to challenges that tend to be neglected by mainstream bioethics, also has the potential to move peopleÕs attention away from other pertinent issues. This may happen if researchers become preoccupied with the transformative effects of genetics, and we argue that a wider reading of geneticization should inspire critical analysis of the sociocultural preconditions under which genetics is currently evolving.