Genomics and public health: ethical, legal, and social issues (original) (raw)

The routinisation of genomics and genetics: implications for ethical practices

Journal of Medical Ethics, 2006

Among bioethicists and members of the public, genetics is often regarded as unique in its ethical challenges. As medical researchers and clinicians increasingly combine genetic information with a range of non-genetic information in the study and clinical management of patients with common diseases, the unique ethical challenges attributed to genetics must be reexamined. A process of genetic routinisation that will have implications for research and clinical ethics, as well as for public conceptions of genetic information, is constituted by the emergence of new forms of genetic medicine, in which genetic information is interpreted in a multifactorial frame of reference. Although the integration of genetics in medical research and treatment may be a helpful corrective to the mistaken assumptions of genetic essentialism or determinism, the routinisation of genetics may have unintended consequences for the protection of genetic information, perceptions of non-genetic information and the loss of genetic research as a laboratory for exploring issues in research and clinical ethics. Consequently, new ethical challenges are presented by the increasing routinisation of genetic information in both biomedical and public spheres.

Ethical Concerns Related to Medical Genetics

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.

Social and Moral Implications Arising from Genetic Screening and Genetic Engineering

Medical Principles and Practice, 1998

The development of techniques for altering the genetic makeup of humans as well as animals has proceeded at a much faster pace than the discussion of the moral and social implications. The human genome project aims at sequencing all the genes that are required to form a human being. The use of genetic profiles that appear to deviate from the ideal for assessing individuals for jobs or insurance cover is an aspect of this new science that will probably continue to present ethical problems. There are unquestionable benefits from treating hitherto incurable diseases using gene therapy and also from being able to produce pharmacologically active proteins in bacteria. Examples are given of how these are open to abuse. The development of techniques for cloning mammals including man also provides a moral dilemma as to where to draw the line between cloning human cells to reconstruct diseased organs and cloning a whole person. Therefore a total ban worldwide on cloning human tissue is perhaps impracticable and undesirable.

Review of "Genetic Ethics: An Introduction"

Essays in Philosophy, 2019

There are few technological innovations that have galvanized public ethical debates more then the application of genomics biotechnology in human medicine. Case in point is the public outcry that resulted from He Jiankui’s use of CRISPR to alter the genomes of twin girls. While the alteration was intended to increase the children’s resistance to HIV, medical professionals and bioethicists alike called the research highly problematic and ethically troubling (Normile 2018). This outcry was the result of clear violations of research standards, but also was due to how biotechnology was applied and the nature of the genetic changes themselves. As illustrated by this case, biomedical technologies have the promise of promoting social benefits, such as reproductive freedom, healthy aging, and the prevention and/or treatment of genetic diseases. Indeed, Farrelly argues that “an understanding of the role that genes play... could expand the domain of interventions (both environmental and genetic) to improve our opportunities for living flourishing lives” (p.2). However, these technologies could also be applied in ways that are ethically problematic, as we have learned from the history of eugenics, where advances in knowl- edge of genetics led to outrageous social injustices...

Primer on Medical Genomics Part XIII: Ethical and Regulatory Issues

Mayo Clinic Proceedings, 2004

Although 50 years have elapsed since the elucidation of the DNA molecule, the recent near-complete sequencing of the human genome has sharply accelerated the incorporation of genetics into the medical mainstream. Along with these scientific advances, however, have surfaced challenges, liabilities, and issues regarding the processing and management of genetic information as they relate to core ethical principles such as respect for autonomy, beneficence, nonmaleficence, and justice. Institutions and state and federal governments have initiated systematic and preemptive measures in education, resource development, and protective legislation to address these cardinal ethical is-sues. Genetic research is also being scrutinized carefully by institutional review boards, an activity that should not be perceived as being adversarial but rather as a protective shield for investigators and research participants alike. Ultimately, it is hoped that genomics medicine will diminish rather than enhance existing sex-, race-, and socioeconomic class-based inequities in health care access and delivery. This article describes some but not all aspects of the ethical, legal, and social implications of genomics in clinical practice.

Legal, Ethical, and Social Issues in Human Genome Research

Annual Review of Anthropology, 1998

▪ In the past several decades, biological sciences have been revolutionized by their increased understanding of how life works at the molecular level. In what ways, and to what extent, will this scientific revolution affect the human societies within which the science is situated? The legal, ethical, and social implications of research in human genetics have been discussed in depth, particularly in the context of the Human Genome Project and, to a lesser extent, the proposed Human Genome Diversity Project. Both projects could have significant effects on society, the former largely at the level of individuals or families and the latter primarily at the level of ethnic groups or nations. These effects can be grouped in six broad categories: identity, prediction, history, manipulation, ownership and control, and destiny.

Genetic testing: ethical aspects

Open Medicine, 2018

The aim of this article is to provide an analysis of the main issues related to the application of predictive medicine by analysing the most significant ethical implications. Genetic medicine is indeed a multidisciplinary matter that covers broad contexts, sometimes transversely. Its extreme complexity, coupled with possible perceived repercussions on an individual’s life, involves important issues in the ethical, deontological and legal medical field. The aspects related to the execution of genetic testing have to be addressed at different levels, starting with the correct information about the “cognitive” meaning they intend (by forcefully disassociating it from the strange “preventive aspect”) to the legal medical issues that can be aroused in the field of forensic pathology, medical responsibility and insurance. There is no doubt that in recent years, from the decoding of the human genome, genetic research has exponentially expanded with an equally exponential increase in its us...