When the complete human genomehas been sequenced, everyone of us will becomea potential candidate for genetic counselingand testing. Within a short period of timeeveryone will obtain his personal geneticpassport identifying deleterious andsusceptibility genes. With the availability ofpresymptomatic tests for late-onset disordersand the possibilities of prevention andtreatment, the conflict between directivenessand non-directiveness will dominate thecounseling setting. Despite general consent onproviding genetic information in a nondirectivefashion to preserve value neutrality andenhance client's autonomy, there is no acceptedcommon definition of what non-directivenessreally is or (...) ought to be. The article tries toelaborate some aspects which might be fruitfuland clarifying in the complex issues involvedin the black box of genetic counseling. (shrink)

In the years following World War II, and increasingly during the 1960s and 1970s, professional scientific societies developed internal sub-committees to address the social implications of their scientific expertise. This article explores the early years of one such committee, the American Society of Human Genetics’ “Social Issues Committee,” founded in 1967. Although the committee’s name might suggest it was founded to increase the ASHG’s public and policy engagement, exploration of the committee’s early years reveals a more complicated reality. Affronted by (...) legislators’ recent unwillingness to seek the expert advice of human geneticists before adopting widespread neonatal screening programs for phenylketonuria, and feeling pressed to establish their relevance in an increasingly resource-scarce funding environment, committee members sought to increase the discipline’s expert authority. Painfully aware of controversy over abortion rights and haunted by the taint of the discipline’s eugenic past, however, the committee proceeded with great caution. Seeking to harness interest in and assert professional control over emerging techniques of genetic diagnosis, the committee strove to protect the society’s image by relegating ethical and policy questions about their use to the individual consciences of member scientists. It was not until 1973, after the committee’s modest success in organizing support for a retrospective public health study of PKU screening and following the legalization of abortion on demand, that the committee decided to take a more publicly engaged stance. (shrink)

Until recently, genetics counselors and medical geneticists considered themselves lucky if they could provide parents with predictive information about a small number of severe genetic disorders. Testing and counseling were indicated primarily for conditions of thithis s sort. Out of respect for the autonomy of parental reproductive decision making, the prevailing ethic of genetic counseling stressed nondirectiveness and value neutrality As summarized by Arthur Caplan, the hallmarks of this stance includea willingness to provide testing and counseling to all who voluntarily (...) seek it, the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, the fair and balanced presentation of all options for action if a problem is discovered, a willingness to answer all questions asked by those seeking services, and an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits. (shrink)

Bioethics became applied ethics when it was assimilated to moral philosophy. Because deduction is the rationality of moral philosophy, subsuming facts under moral principles to deduce conclusions about what ought to be done became the prescribed reasoning of bioethics, and bioethics became a theory comprised of moral principles. Bioethicists now realize that applied ethics is too abstract and spare to apprehend the specificity, particularity, complexity and contingency of real moral issues. Empirical ethics and contextual ethics are needed to incorporate these (...) features into morality, not just bioethics. The relevant facts and features of problems have to be identified, investigated and framed coherently, and potential resolutions have to be constructed and assessed. Moreover, these tasks are pursued and melded within manifold contexts, for example, families, work and health care systems, as well as societal, economic, legal and political backgrounds and encompassing worldviews. This naturalist orientation and both empirical ethics and contextual ethics require judgment, but how can judgment be rational? Rationality, fortunately, is more expansive than deductive reasoning. Judgment is rational when it emanates from a rational process of deliberation, and a process of deliberation is rational when it uses the resources of non-formal reason: observation, creative construction, formal and informal reasoning methods and systematic critical assessment. Empirical ethics and contextual ethics recognize that finite, fallible human beings live in complex, dynamic, contingent worlds, and they foster creative, critical deliberation and employ non-formal reason to make rational moral judgments. (shrink)

The article aims at organizing multifaceted discourse on the concept of nondirectiveness in the practice of genetic counseling. The analysis of areas where nondirectiveness was invoked and discussed reveals the problematic confusion of different meanings of the term that often leads to false conclusions about the relations between the professional standards and the practice of genetic counseling. The article offers clear and comprehensive description of different approaches to nondirectiveness and various ideas associated with the term. Normative consequences of various meanings (...) attributed to nondirectiveness are explored. The article concludes by presenting important but unsolved problems regarding both theory (the meaning of nondirectiveness and its operational definition) and practice of genetic counseling (the scope and content of the norm of nondirective counseling). (shrink)

Cliff Hooker’s effort at developing a naturalistic philosophy for scientific and quotidian reason is formidable. With Barry Hoffmaster, Hooker has recently expanded his naturalism to encompass moral reason and moral epistemology by considering a real life example of moral decision-making. Hoffmaster and Hooker’s work thus presents a unique opportunity to examine a thoroughgoing naturalism applied to a concrete, complex case. This paper offers a critical assessment of the Hoffmaster and Hooker piece through the lens of an externalist approach to naturalism (...) developed by Adam Morton. General lessons for naturalism about reason are revealed before a rough sketch of a novel account of problems and problem-solving is given to illustrate the importance of externalism. (shrink)

Recognizing that all traits are the result of an interaction between genes and environment, I offer a set of criteria for nevertheless making sense of our practice of singling out certain traits as genetic ones, in effect making a distinction between causes and mere conditions. The central criterion is that a trait is genetic if it is genetic differences that make the differences in that trait variable in a given population. A second criterion requires that genetic traits be individuated in (...) a way that matches what some genetic factors cause specifically. Clarifying our causal and classificatory language here can help us to avoid confusions of both theoretical and practical significance. (shrink)

In order to ensure an adequate and ongoing protection of individuals participating in scientific research, the impacts of new biomedical technologies, such as Next Generation Sequencing , need to be assessed. In this light, a necessary reexamination of the ethical and legal structures framing research could lead to requisite changes in informed consent modalities. This would have implications for Institutional Review Boards , who bear the responsibility of guaranteeing that participants are verifiably informed, and in sufficient detail, to understand the (...) reality of genetic research as it is practiced now. Current literature allowed the identification of key emergent themes related to the consent process when NGS was used in a research setting. (shrink)

Much of what has been written about the history of medical genetics in North America has focused on physician involvement in eugenics and the transition from heredity counseling to genetic counseling in the United States. What are typically missing in these accounts are details concerning the formation of a new medical specialty, i.e., medical genetics, and Canada’s involvement in specialty formation. Accordingly, this paper begins to fill in gaps by investigating, on the one hand, the history of American and Canadian (...) geneticists working together to support the creation of examining and teaching positions in human genetics in North American medical schools and, on the other, working independently of one another to monitor the rate and direction of workloads and patient access to local genetic counseling and laboratory services and, subsequently, achieve recognition for medical genetics as a medical specialty at the national level. (shrink)