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. (shrink)

The debate continues about whether people have a duty to pass on the positive results of their genetic tests to relatives who are at risk from the same disease, and, should they refuse, whether physicians and genetic counselors then have the duty to do so. To date, the role and views of nurses in this debate have not been investigated. In our study, a sample of Israeli nurses, untrained in genetics, were asked for their theoretical opinions and what practical steps (...) they would take in the case of patients' refusal to disclose. The nurses were very sure that patients should inform their families but were equally sure that nurses must respect their decision to disclose or not. Few said they would take practical steps to disclose information if the patient objected. The authors believe that the most useful and appropriate role for nurses in this field is in working to bring about co-operation between patients and family members. (shrink)

Medicine is incorporating genetic services into all avenues of health‐care, ranging from the rarest to the most common diseases. Cognitive theories of decision‐making still dominate professionals’ understanding of patient decision‐making about how to use genetic information and whether to have testing. I discovered a conceptual model of decision‐making while carrying out a phenomenological‐hermeneutic descriptive study of a convenience sample of 12 couples who were interviewed while deciding whether to undergo prenatal genetic testing.Thirty‐two interviews were conducted with 12 men and 12 (...) women separately. Interviews were transcribed verbatim and all data were analyzed using three levels of coding that were sorted into 30 categories and then abstracted into three emergent meta‐themes that described men's and women's attempts to make sense and find meaning in how to best use prenatal genetic technology. Their descriptions of how they thought about, communicated, and coped with their decision were so detailed it was possible to discern nine different types of thinking they engaged in while deciding to accept or decline testing.They believed that decision‐making is a process of working through your own personal style of thinking. This might include only one or any combination of the following types of thinking: analytical, ethical, moral, reflective, practical, hypothetical, judgmental, scary, and second sight, as described in detail by these 12 couples. (shrink)

For decades questionnaires have been used to measure the cognitive and psychological effects of prenatal genetic testing, but little is known about why some women undergo testing and others decline. Research indicates that many factors influence decision making, including values and beliefs. What is often denied rather than recognized is that the professional and personal values and beliefs held by the health care provider influence the patient’s decision. It is assumed that, if genetic services are delivered in a nondirective manner, (...) patients will not be affected by the provider’s personal and professional standpoint. The qualitative research data reported here challenge this assumption. Getting to know patients’ moral understanding and patterns of ethical reasoning by listening to their personal stories is recommended as a better way for nurses to help patients to make informed and autonomous decisions about prenatal genetic screening or diagnostic tests. (shrink)

The increasing availability of DNA-based diagnostic tests has raised issues about whether these should be applied to the population at large in order to identify, treat or prevent a range of diseases. DNA tests raise concerns in the community for several reasons. There is the possibility of stigmatisation and discrimination between those who test positive and those who don't. High-risk individuals may be identified for whom no proven effective intervention is possible, or conversely may test "positive" for a disease that (...) does not eventuate. Controversy concerning prenatal diagnosis and termination of affected pregnancies may arise. Haemochromatosis, however, is a disease that is not only treatable but also preventable if those at high risk are identified presymptomatically. This paper will identify and discuss key issues regarding DNA-based population screening for haemochromatosis, and argue that population-based genetic screening for haemochromatosis should be supported when a number of contentious issues are addressed. In the context of a health system with limited resources haemochromatosis is the paradigm of a disorder where there is an ethical and clinical imperative to encourage presymptomatic DNA testing for all in ethnically relevant communities. (shrink)

Recalling that the Preamble of UNESCO's Constitution refers to “the democratic principles of the dignity, equality and mutual respect of men”, rejects any “doctrine of the inequality of men and races”, stipulates “that the wide diffusion of culture, and the education of humanity for justice and liberty and peace are indispensable to the dignity of men and constitute a sacred duty which all the nations must fulfil in a spirit of mutual assistance and concern”, proclaims that “peace must be founded (...) upon the intellectual and moral solidarity of mankind”, and states that the Organization seeks to advance “through the educational and scientific and cultural relations of the peoples of the world, the objectives of international peace and of the common welfare of mankind for which the United Nations Organization was established and which its Charter proclaims”. (shrink)

Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion by (...) most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better. (shrink)

: Nearly all of the literature on the ethical, legal, or social issues surrounding genetic tests has proceeded on the assumption that any particular test for a gene mutation yields information about only one disease condition. Even though the phenomenon of pleiotropy, where a single gene has multiple, apparently unrelated phenotypic effects, is widely recognized in genetics, it has not had much significance for genetic testing until recently. In this article, I examine a moral dilemma created by one sort of (...) pleiotropic testing, APOE genotyping, which can yield information about the risk of two different conditions--coronary heart disease and Alzheimer's disease. A physician administering APOE testing for the beneficial purpose of assessing the risk of heart disease may discover medically useless and socially harmful information about the patient's risk of Alzheimer's disease. I explore how much providers should disclose to patients about pleiotropic test results and whether patients are obligated to know as much about their genetic condition as possible. (shrink)

Screening programmes are becoming increasingly popular since prevention is considered 'better than cure'. While earlier diagnosis may result in more effective treatment for some, there will be consequent harm for others due to anxiety, stigma, side-effects etc. A screening test cannot guarantee the detection of all 'abnormal' cases, therefore there will be false reassurance for some. A proper consideration of the potential benefit and harm arising from screening may lead to the conclusion that the programme should not be offered. A (...) modified utilitarian approach may be used for allocation of scarce resources in health care. Ethics has an important role in this evaluation. (shrink)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...) without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

Medical screening is justified on the strength of the assumption that the earlier disease is detected, the better it is for the patient. On examination, however, the assumption turns out to be severely flawed, and inadequate anyway, since it is not only the patient with whom we should be concerned, but healthy people as well. Instead of making assumptions about the ill, we should prove a test's overall benefit to the individual taking it before we recommend it.

New dimensions in different ethical scenarios following genetic information require new medical-ethical Action Guides for physician-patient interaction. This paper discusses the ambiguity in moral choice between a “right not to know” and “a duty to know”, regarding parental decisionmaking pro or contra selective abortion following prenatal screening for autosomal dominant polycystic kidney disease (Potter III) and related public policy issues.

As a result of the increase in genetic testing and the fear of discrimination by insurance companies, employers, and society as a result of genetic testing, the disciplines of ethics, public health, and genetics have converged. Whether relatives of someone with a positive predictive genetic test should be notified of the results and risks is a matter urgently in need of debate. Such a debate must encompass the moral and ethical obligations of the diagnosing physician and the patient. The decision (...) to inform or not will vary depending on what moral theory is used. Utilising the utilitarian and libertarian theories produces different outcomes. The principles of justice and non-maleficence will also play an important role in the decision. (shrink)

Geneticization is a broad term referring to several related processes such as a spreading tendency to use a genetic model of disease explanation, a growing influence of genetics in medical practice, and the slow changing of individual and societal attitudes towards reproduction, prevention and control of disease. These processes can be demonstrated in medical literature on preventive genetic screening and counselling programs for β-thalassaemia in Cyprus, the United Kingdom and Canada. The preventive possibilities of the new genetic and diagnostic technologies (...) have been quickly understood and advocated by health professionals, and their educational strategies have created a web of social control, in marked contrast to the alleged voluntary decision-making process and free choice. Genetic diagnostic technologies have led to considerable changes in control and management of β-thalassaemia, and have generated a number of unresolved incongruities. (shrink)

The act/omission distinction is used throughout Western legal systems, and indeed elsewhere, to police the boundaries between acceptable medical practice and unacceptable interventions designed to bring about the death of patients. Without exception, it has proved impossible to maintain the distinction with any clarity. In the United Kingdom, for example, it is lawful both to withhold and to withdraw from a patient treatment that the medical ….

Dr Andorno and I have corresponded for some time on the question of a right not to know information. I enjoyed reading his paper and I am struck by the degree of agreement that we share. We both agree—for example, that unsolicited knowledge can be a burden which can significantly compromise an individual’s psychological integrity. We both share a desire to respect individual self determination. Also we each consider it reasonable for individuals to choose not to receive potentially harmful information. (...) I have already made these arguments, and more, elsewhere,1 but my starting point has not been autonomy, as advocated by Andorno, but rather privacy. In essence, my argument is that individuals enjoy, and are entitled to enjoy, a measure of psychological privacy which can be invaded by unwarranted disclosures of information.The reason that I prefer privacy to autonomy is not because I have any wish to “deny people the right to self determination”2 but rather because I perceive deficiencies in the autonomy model. Indeed, my approach and that of Andorno are not mutually exclusive; it is simply that my approach is broader and encompasses some of the harder cases which an autonomy based approach cannot help us to resolve. Thus, most of the substance of Andorno’s approach is subsumed within my model. I have—for example, no disagreement whatsoever with the view that if you have an indication that an individual would not wish to know then this wish should be respected. One might even establish novel means of discerning individuals’ wishes by establishing a register to record advance refusals, as Andorno …. (shrink)

This volume contains essays which cover a range of aspects in the debate over genetic testing. It looks at both the advantages and disadvantages involved in knowing or not knowing whether one is a carrier of certain genetic traits.

In these twelve papers notable ethicists use the resources of ethical theory to illuminate important theoretical and practical topics, including the nature of public health, notions of community, population bioethics, the legitimate role of law, the use of cost-effectiveness as a methodology, vaccinations, and the nature of infectious disease.

This important new book develops a new concept of autonomy. The notion of autonomy has emerged as central to contemporary moral and political philosophy, particularly in the area of applied ethics. professor Dworkin examines the nature and value of autonomy and uses the concept to analyse various practical moral issues such as proxy consent in the medical context, paternalism, and entrapment by law enforcement officials.

This book is a major contribution to the study of the philosophy of action, moral philosophy, and political philosophy. Its central idea is a radically unorthodox theory of rational action. Most contemporary Anglo-American philosophers believe that action is motivated by desire. Professor Benn rejects the doctrine and replaces it with a reformulation of Kant's ethical and political theory, in which rational action can be determined simply by principles, regardless of consequences. The book analyzes the way in which value conflicts can (...) be rationally resolved, the objectivity of value, the concept of moral personality, the principles of non-interference and respect of persons, the ideals of autonomy and community and various aspects of individual rights - focusing on the rights to freedom, welfare, and privacy. (shrink)

Die faszinierenden Fortschritte molekulargenetischen Wissens, vor allem die weitere Entzifferung des menschlichen Genoms, stellen das individuelle Selbstverständnis vor die Forderung nach einer kopernikanischen Revolutionierung der Denkungsart und führen die Anforderungen an Mündigkeit und Selbstverantwortung in neue Dimensionen von Aufklärung und Selbstbestimmung. Die rasante Entwicklung prädiktiver und präventiver Leistungen moderner Risikofaktorenmedizin fordert vom medizinischen Laien Gesundheitsmündigkeit und vom medizinischen Experten neue Formen beratender und begleitender Dienste. Genetische Prädiktion schwerer Erbkrankheiten macht eine ethische Diskussion des Begriffs verantwortlicher Elternschaft unerläßlich, ebenso die Zurückweisung (...) von Forderungen nach einer staatlich administrierten oder geförderten Eugenik. Gesundheitspolitik und -finanzierung werden deshalb Prinzipien wie Selbstbestimmung und Subsidiarität, sowie das traditionelle Prinzip der Solidarität, in der Diskussion um Verantwortung und Finanzierung von Gesundheit neu ausmessen müssen. (shrink)