Care of the Self and Patient Participation in Genetic Discourse: A Foucauldian Reading of the Surgeon General's “My Family Health Portrait” Program

Critics of genetic discourse are concerned that deterministic and discriminatory views of genetics are increasingly becoming adopted. These views argue that current genetic discourse becomes a source of power whereby powerful institutions harm people with so-called “bad” genes. This essay argues that current analyses of the power of genetics discourse are grounded in an improper reading that disempowers patients. Deploying Michel Foucault's concept “care of the self,” this essay claims that genetics discourse is better understood as a way that patients take on power through rhetoric rather than a force that has power over patients. Through a close reading of the “My Family Health Portrait” program, this paper argues that patients experience a process of “subjection” wherein they become agents of and objects of genetics discourse both. This alternative mode of analyzing the power of genetics discourse has implications for our collective understanding of the operations of the care of the self and the uses of genetic information that we propose.     

Differences in Individual Approaches: Communication in the Familial Breast Cancer Consultation and the Effect on Patient Outcomes

This multicenter study aimed to assess (i) whether individual clinical geneticists and genetic counselors vary in their communication skills and (ii) whether this variation in communication impacts on patient outcomes, such as anxiety, depression, genetics knowledge, and satisfaction. One hundred and fifty women from high-risk breast cancer families attending their first genetic counseling consultation completed pre and post-consultation self-report questionnaires. The consultations were audiotaped and transcribed verbatim. Univariate analyses showed highly significant differences between individual clinical geneticists and genetic counselors in: facilitating understanding (p 0.001); facilitating active involvement (p 0.001); facilitating partnership building (p = 0.003); addressing emotional concerns (p 0.001); and discussing prophylactic mastectomy (p = 0.017). Multivariate linear regressions showed that this variation in communication resulted in a greater change in patients depression 4 weeks after the counseling session (p = 0.017). These findings suggest clinical geneticists and genetic counselors have achieved some standardization in communicating information, but showed diversity in their facilitation skills. Communication skills may be a useful area to explore further in this field.     

Evaluating the Impact of Genetic Counseling and Testing with Signal Detection Methods

One measure of the impact of genetic counseling and testing (GCT) is the extent to which it fosters behavioral change that is consistent with mutation status. We describe and illustrate how two different signal detection methods, receiver operating characteristic (ROC) analysis and recursive partitioning, can be used in this context to evaluate the impact of GCT. We analyzed real screening behavior data obtained in the 12 months following GCT for Hereditary Nonpolyposis Colon Cancer (HNPCC) using these two different signal detection approaches. Each approach demonstrated that GCT had an impact on behavioral outcomes, and was effective in fostering behavioral outcomes appropriate to mutation status. The ROC approach demonstrated that GCT was effective because mutation positive and mutation negative individuals could be distinguished on the basis of the number of recommended screening behaviors. The recursive partitioning approach demonstrated that GCT was effective because there were generally high rates of adherence to screening guidelines among subjects. The recursive partitioning technique also identified four subgroups of subjects, each with distinct characteristics, for which tailored interventions could be developed to increase rates of adherence to screening guidelines. Signal detection methods are easily implemented and are useful techniques for evaluating the impact of GCT.     

Evaluating Genetic Counseling: Client Expectations,Psychological Adjustment and Satisfaction with Service

Periodic evaluations of genetic counseling services are useful for determining the effectiveness of counseling in meetings its psycho-educational aims, as well as identifying where improvements to the service may be made. This study aimed to evaluate the genetic counseling services provided by Genetic Services of Western Australia (GSWA) to determine the impact of counseling on client expectations, satisfaction with the service, and psychological adjustment, defined as wellbeing and perceived personal control (PPC). A total of 122 clients participated in a self-administered survey conducted pre- and post-counseling. Client expectations of the service as a means of providing information were met, and opportunities for counselors to meet client’s expectations of psychological support were identified. Furthermore, counseling was found to maintain and enhance psychological wellbeing of clients. The role of counseling in facilitating the development of PPC was a key contributor to a high sense of satisfaction in clients.     

The immoral gene: Does it really exist?

Over the last years several European patents were opposed for protecting technology violating the morality requirement under Article 53(a) EPC. Attempts have been made by the Appeal Boards of the European Patent Office (EPO), as well as by amendments introduced into the Implementing Regulations of the European Patent Convention (EPC), to address this sensitive patentability requirement more precisely. The most recent hot topic coming up in this context is the patentability of stem cells. It is to be expected that this discussion will still go on in the field of biotechnological inventions for the next several years. An earlier version of this paper was presented at an international conference, “The Ethics of Intellectual Property Rights and Patents,” held in Warsaw, Poland on 23–24 April, 2004.     

The Duty to Eradicate Global Poverty: Positive or Negative?

In World Poverty and Human Rights, Thomas Pogge argues that the global rich have a duty to eradicate severe poverty in the world. The novelty of Pogges approach is to present this demand as stemming from basic commands which are negative rather than positive in nature: the global rich have an obligation to eradicate the radical poverty of the global poor not because of a norm of beneficence asking them to help those in need when they can at little cost to themselves, but because of their having violated a principle of justice not to unduly harm others by imposing on them a coercive global order that makes their access to the objects of their human right to subsistence insecure. In this paper, I claim that although Pogge is right in arguing that negative duties are crucial in an account of global justice, he is wrong in saying that they are the only ones that are crucial. Harming the global poor by causing their poverty provides a sufficient but not a necessary condition for the global rich to have a duty of justice to assist them. After engaging in a critical analysis of Pogges argument, I conclude by suggesting the need for a robust conception of cosmopolitan solidarity that includes positive duties of assistance which are not mere duties of charity, but enforceable ones of justice.     

The Nature and Significance of Behavioural Genetic Information

In light of the human genome project, establishing the genetic aetiology of complex human diseases has become a research priority within Western medicine. However, in addition to the identification of disease genes, numerous research projects are also being undertaken to identify genes contributing to the development of human behavioural characteristics, such as cognitive ability and criminal tendency. The permissibility of this research is obviously controversial: will society benefit from this research, or will it adversely affect our conceptions of ourselves and each other? When assessing the permissibility of this research, it is important to consider the nature and deterministic significance of behavioural genetic information. Whilst todate there has been much discussion and debate about the properties of genetic information per se and genetic determinism, this has not been applied to behavioural genetic research and its ethical implications. Therefore, this paper elucidates how behavioural genetic information can be distinguished from other types of genetic and non-genetic information and also synthesises the determinative significance of genetic factors for the development of human behavioural traits. Undertaking this analysis enables the ethical issues raised by this research to be debated in an appropriate context and indicates that separate policy considerations are warranted.

     

清代中期“以礼代理”说刍议

清代中期,以凌廷堪、焦循、阮元为代表的汉学家提出了“以礼代理”说,即主张用礼学代替理学。他们认为,儒学的中心是“礼”而不是“理”,脱离了“礼”而言“理”,只能导致师心自用以及对人的具体情感的漠视。这一学说是清初顾炎武所倡导的学术方向的继续,它把人们的目光由内在精神变革转向对外在制度的关注;同时,这一学说明确反对以抽象化的“理”来约束人们的行为,它在一定程度上减轻了理学所带来的消极影响。     

Young children's sensitivity to probabilistic phonotactics in the developing lexicon

A series of three experiments examined children's sensitivity to probabilistic phonotactic structure as reflected in the relative frequencies with which speech sounds occur and co-occur in American English. Children, ages 212 and 312 years, participated in a nonword repetition task that examined their sensitivity to the frequency of individual phonetic segments and to the frequency of combinations of segments. After partialling out ease of articulation and lexical variables, both groups of children repeated higher phonotactic frequency nonwords more accurately than they did low phonotactic frequency nonwords, suggesting sensitivity to phoneme frequency. In addition, sensitivity to individual phonetic segments increased with age. Finally, older children, but not younger children, were sensitive to the frequency of larger (diphone) units. These results suggest not only that young children are sensitive to fine-grained acoustic-phonetic information in the developing lexicon but also that sensitivity to all aspects of the sound structure increases over development. Implications for the acoustic nature of both developing and mature lexical representations are discussed.