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At least 325 records · Page 18Linked to original sources
PubMed2000

Genetic ignorance, moral obligations and social duties.

In a contribution to The Journal of Medicine and Philosophy, Professor Rosamond Rhodes argues that individuals sometimes have an obligation to know about their genetic disorders, because this is required by their status as autonomous persons. Her analysis, which is based on Kant's concept of autonomy and Aristotle's notion of friendship, is extended here to consequentialist concerns. These are of paramount importance if, as we believe and Professor Rhodes herself implies, the Kantian and Aristotelian doctrines can be helpful only in the sphere of private morality, not in the public realm. Better tools for assessing the right to genetic ignorance as an issue of public policy can, we contend, be found in Mill's ideas concerning liberty and the prevention of harm. Our own conclusion, based on the Millian way of thinking, is that individuals probably do have the right to remain in ignorance in the cases Professor Rhodes presents as examples of a duty to know.

Ethics, Medical↗
PubMed1998

Genetic links, family ties, and social bonds: rights and responsibilities in the face of genetic knowledge.

Currently, some of the most significant moral issues involving genetic links relate to genetic knowledge. In this paper, instead of looking at the frequently addressed issues of responsibilities professionals or institutions have to individuals, I take up the question of what responsibilities individuals have to one another with respect to genetic knowledge. I address the questions of whether individuals have a moral right to pursue their own goals without contributing to society's knowledge of population genetics, without adding to their family's knowledge of its genetic history, and without discovering genetic information about themselves and their offspring. These questions lead to an examination of the presumed right to genetic ignorance and an exploration of a variety of social bonds. Analyzing cases in light of these considerations leads to a surprising conclusion about a widely accepted precept of genetic counseling, to some ethical insights into typical problems, and to some further unanswered questions about personal responsibility in the face of genetic knowledge.

Beneficence↗
PubMed1998

A map to a new treasure island: the human genome and the concept of common heritage.

While the 1970's have been called the environmental years, the 1990's could be seen as the genome years. As the challenge to map and to sequence the human genome mobilized the scientific community, risks and benefits of information and uses that would derive from this project have also raised ethical issues at the international level. The particular interest of the 1997 UNESCO Declaration relies on the fact that it emphasizes both the scientific importance of genetics and the appropriate reinforcement of human rights in this area. It considers the human genome, at least symbolically, as the common heritage of humanity.

Advisory Committees↗
PubMed1998

What's special about molecular genetic diagnostics?

In its first part, this paper seeks to make plausible (a) that molecular genetic diagnostics differs in ethically relevant ways from traditional types of medical diagnostics and (b) that the consequences of introducing this technology in broad screening-programs to detect widespread genetic diseases in a population which is not at high risk may change our understanding of health and disease in a problematic way. In its second part, the paper discusses some aspects of public control of scientific and technological innovations in the field of molecular genetic diagnostics.

Bioethics↗
PubMed1998

Genotyping in clinical trials: towards a principle of informed request.

This paper reviews the usefulness of bioethical instruments such as the informed consent principle to handle ethical and political challenges of clinical trials in genotyping and DNA-banking and discusses an informed request model as well as other contractual relations between research institutions, patients, and their families.

Bioethics↗
PubMed2004

Ethical issues in the diagnostic genetic testing process.

The diagnostic genetic testing process has certain unique ethical features and deserves special consideration. The purpose of this study was to determine through empirical research, using focussed interview, what ethical issues are involved in the diagnostic genetic testing process. This article describes views and perceptions of adult patients, parents of child patients and various personnel groups (n=30). The ethical issues were analysed classified into three main categories: a) personnel characteristics, including personality, professional skills, morals and values; b) realization of ethical principles in the examination process, with subcategories of knowledge, autonomy, data protection and equity; and c) consequences of genetic testing, including patients' control over their own lives, manifestation of heterogeneity and outlook on the world. Problematic ethical issues in all three main categories were described in a more many-sided way by parents and personnel than by adult patients. In the future, attention should be paid to the content areas highlighted by the study, in both clinical practice and further studies.

Adult↗
PubMed2004

Human genetic banking: altruism, benefit and consent.

This article considers how we should frame the ethical issues raised by current proposals for large-scale genebanks with on-going links to medical and lifestyle data, such as the Wellcome Trust and Medical Research Council's 'UK Biobank'. As recent scandals such as Alder Hey have emphasised, there are complex issues concerning the informed consent of donors that need to be carefully considered. However, we believe that a preoccupation with informed consent obscures important questions about the purposes to which such collections are put, not least that they may be only haphazardly used for research (especially that of commercial interest)--an end that would not fairly reflect the original altruistic motivation of donors, and the trust they must invest. We therefore argue that custodians of such databases take on a weighty pro-active duty, to encourage public debate about the ends of such collections and to sponsor research that reflects publicly agreed priorities and provides public benefits.

Altruism↗
PubMed2004

'Wonderment and dread': representations of DNA in ethical disputes about forensic DNA databases.

The national DNA Database of England & Wales is the largest forensic DNA database in the world. Since 1995 it has quickly developed to hold the genetic profiles of over two million people. This collection of tissue samples, taken without consent from a sizeable collection of the population, has engendered a number of ethical commentaries on its legitimacy as a proportionate response to crime. This paper examines the ways in which the ethical discourses, which surround the uses of the National DNA Database, drew upon and deployed a number of distinct representations of DNA. It is argued that key ideas about DNA have become central to everyday assertions about the benefits and dangers of this forensic technology.

Biological Specimen Banks↗
PubMed2004

Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.

Genetic discrimination, defined as the differential treatment of individuals or their relatives on the basis of actual or presumed genetic differences, is an emerging issue of interest in academic, clinical, social and legal contexts. While its potential significance has been discussed widely, verified empirical data are scarce. Genetic discrimination is a complex phenomenon to describe and investigate, as evidenced by the recent Australian Law Reform Commission inquiry in Australia. The authors research project, which commenced in 2002, aims to document the multiple perspectives and experiences regarding genetic discrimination in Australia and inform future policy development and law reform. Data are being collected from consumers, employers, insurers and the legal system. Attempted verification of alleged accounts of genetic discrimination will be a novel feature of the research. This paper overviews the early stages of the research, including conceptual challenges and their methodological implications.

Australia↗
PubMed2004

Genes, genomes and identity. Projections on matter.

This paper aims to show that references to genes and genomes are counterproductive in legal and political understandings of what it is to be human and a unique individual. To support this claim, I will give a brief overview of the many incompatible meanings the term 'identity' has gathered in reference to genes or genome in the contexts of biology and family ancestry, personal identity, species identity. One finds various and incompatible understandings of these expressions. While genetics is usually considered to deliver definitive knowledge about history and the future, genomics seems to work with more complicated relations between DNA, inheritance and phenotype. In genomics, 'identity' is no longer about identification and status markers but about individualization. Regulatory and legal documents project from traits to genomes, implying that individuality is at least represented, if not created, in a unique genome. Boundaries between humans and other animals, between different 'kinds' of humans, and between all individual humans are re-established via reference to the chemical matter of DNA. My analysis will show how this trend is a reactionary response to modern understandings of identities as social products and that it ignores new biomedical understandings of human bodies.

Animals↗