Parental Authority, Future Autonomy, and Assessing Risks of Predictive Genetic Testing in Minors

The debate over the genetic testing of minors has developed into a major bioethical topic. Although several controversial questions remain unanswered, a degree of consensus has been reached regarding the policies on genetic testing of minors. Recently, several commentators have suggested that these policies are overly restrictive, too narrow in focus, and even in conflict with the limited empirical evidence that exists on this issue. We respond to these arguments in this paper, by first offering a clarification of three key concepts—autonomy of the minor, future autonomy, and parental authority—which must be disentangled. We then respond to the arguments by noting the uncertainty of the value of predictive genetic information, and by assessing the psychosocial risks still involved in genetic testing of minors, which are also largely unknown. We conclude that the current consensus position is justified at this stage, in light of the predictions of harm resulting from genetic testing of minors that have not been adequately proved to be unwarranted.     

Social-science Perspectives on Bioethics: Predictive Genetic Testing (PGT) in Asia

In this essay, I indicate how social-science approaches can throw light on predictive genetic testing (PGT) in various societal contexts. In the first section, I discuss definitions of various forms of PGT, and point out their inherent ambiguity and inappropriateness when taken out of an ideal–typical context. In section two, I argue further that an ethics approach proceeding from the point of view of the abstract individual in a given society should be supplemented by an approach that regards bioethics as inherently ambiguous, contested, changeable and context-dependent. In the last section, I place these bioethical discussions of PGT in the context of Asian communities. Here, a critical view of what constitutes a community and culture proves necessary to understand the role of bioethical debates and the empirical manifestations of PGT in Asian societies. A discussion of the concepts of family and kinship in relation to PGT indicates that any bioethical analysis has to take into account that bioethical values are not just reflections of a cultural community, but embody both bioethical ideals and prevalent political rhetoric which is exhibited, propagated and manipulated by individuals and collectives for a variety of purposes. I end by summarising the contributions that social science could make to the understanding of the bioethics of PGT.     

Proceed with Care: Direct Predictive Testing for Huntington Disease

The cloning of the Huntington disease (HD) gene allows highly accurate predictive testing using direct analysis of the CAG repeat. This new test provides results with almost complete certainty but poses unique counseling issues related to direct testing for an adult-onset disease. These include testing individuals who are at 25% risk, without the need for blood from a 50% at risk relative; the assessment of symptomatic individuals; the need for ongoing counseling despite simplification of laboratory procedures; and counseling of persons from families who represent a new mutation for HD. This paper describes protocols for direct predictive testing for adult and prenatal assessment, on the basis of the experience of the Canadian Collaborative Study on Predictive Testing (CCSPT). Over the past 8 years, we have provided >400 results by using linked markers and, more recently, 416 results by using direct assessment of CAG expansion in the HD gene. The vast majority (86%) of requests for direct predictive testing have been from persons who have not previously received results by using linked markers. Despite the ability to now directly assess for the mutation associated with HD, we still recommend assessment of DNA from an affected relative, as this may significantly enhance the accuracy of information to be provided to the at-risk individual. Distance from a genetics center has previously limited the availability of testing, and therefore we have developed approaches to providing predictive testing in the patient's own community.     

Mate Choice for Genetic Benefits: Time to Put the Pieces Together

It is thought that mate choice allows individuals to obtain genetic benefits for their offspring, and although many studies have found some support for this hypothesis, several critical questions remain unresolved. One main problem is that empirical studies on mate choice and genetic benefits have been rather piecemeal. Some studies (1) aimed to test how mate choice affects offspring fitness, but have not examined whether the benefits are because of genetic effects. Other studies tested whether mate choice provides (2) additive or (3) non-additive genetic benefits and only a few studies (4) considered these genetic effects together. Finally, some studies (5) examined whether the potential benefits that might be gained from mate choice are due to additive genetic effects vs. non-additive effects, and although they found evidence for both, they did not examine whether mate choice is relevant. Furthermore, previous studies have usually not controlled for non-genetic sources of variation in offspring fitness. Thus, there remain gaping holes in our understanding, and it is the connections among the research approaches that now need more attention. We suggest that studies are needed that measure non-genetic effects, the potential benefits from both additive and non-additive genetic effects, and also determine whether mate choice exploits these potential benefits. Such integrative studies are necessary to put the pieces together and clarify the role of genetic benefits in the evolution of mate choice.     

Predictive Validity of Discriminant Analysis for Genetic Data

We examined the predictive validity of the results using discriminant analysis to distinguish statistically among two or more populations with a large sample of random amplified polymorphic DNA (RAPD) loci, but a small sample of genotypes from each population. We compared and contrasted results from randomized data with results from real data of three studies by 100 randomized shuffling of genotypes into various populations. We generally obtained substantial differences between results from randomized data compared to those from the real data in several characteristics of discriminant analysis. We showed that a high level of correctly classified percentage is also obtainable in the analysis of randomized data, mainly with a low number of populations. However, the correctly classified percentage obtained from the real data was generally significantly higher than the percentage obtained from the randomized data. We suggested that the high level of real differences in allele frequencies of the RAPD polymorphic loci clearly distinguished the various populations and that the populations differ significantly in their RAPD contents in accordance with ecological heterogeneity. We obtained either no or a low level of difference between the correct classification rate obtained by the leaving-one-out procedure and that obtained from the original data, attributed to a low number of loci selected by the stepwise method. The results strengthen and support our conclusion and lead us to focus on the discriminant analysis by selecting only low numbers of discriminating variables.     

Testing the Benefits of Neurofeedback on Selective Attention Measured Through Dichotic Listening

The electrophysiological changes after a single session of neurofeedback training (↑SMR/↓Theta) and its effects on executive attention during a dichotic listening test with forced attentional procedures were measured in a sample of 20 healthy women. A pre–post moment test double blind design, with the inclusion of a group receiving sham neurofeedback, allowed for minimization of alien influences. The interaction of Moment × Group was significant, indicating an enhancement of SMR band after the real neurofeedback. The dichotic listening scores were correlated with the amplitude of Beta band in baseline conditions. The performance on the forced left attentional condition in dichotic listening was significantly improved and correlated positively with the post-training enhancement of the SMR band. The sham neurofeedback group also improved DL scores, so a clear affirmation about the benefits of neurofeedback training over cognitive performance could not be unambiguously established. It is concluded that the protocol showed a good independence and acceptable trainability in modifying the EEG results, but there was limited interpretability regarding cognitive outcomes.     

Signs of the Self: An Exploration in Semiotic Anthropology

Peirce's general theory of signs, or semiotic, as he called it, yields a theory of the self that sees it both as the object and the subject of semiotic systems. From this viewpoint, the locus, unity, and continuity of the self will be found in the systems of signs that constitute the dialogues between utterers and interpreters of the signs. Personal identity, in this theory, is also a social and cultural identity and is not confined to the individual organism. Peirce's anti-Cartesianism, which denies intuitive and introspective knowledge of the self, derived that knowledge from the fallible inferences we all make from the observations of external facts, including the signs of the self. This laid the foundation for a semiotic psychology as well as for a semiotic anthropology. [self, semiotic anthropology, personal identity, C. S. Peirce]     

Private and Public Eugenics: Genetic Testing and Screening in India

Epidemiologists and geneticists claim that genetics has an increasing role to play in public health policies and programs in the future. Within this perspective, genetic testing and screening are instrumental in avoiding the birth of children with serious, costly or untreatable disorders. This paper discusses genetic testing and screening within the framework of eugenics in the health care context of India. Observations are based on literature review and empirical research using qualitative methods. I distinguish ‘private’ from ‘public’ eugenics. I refer to the practice of prenatal diagnosis as an aspect of private eugenics, when the initiative to test comes from the pregnant woman herself. Public eugenics involves testing initiated by the state or medical profession through (more or less) obligatory testing programmes. To illustrate these concepts I discuss the management of thalassaemia, which I see as an example of private eugenics that is moving into the sphere of public eugenics. I then discuss the recently launched newborn screening programme as an example of public eugenics. I use Foucault’s concepts of power and governmentality to explore the thin line separating individual choice and overt or covert coercion, and between private and public eugenics. We can expect that the use of genetic testing technology will have serious and far-reaching implications for cultural perceptions regarding health and disease and women’s experience of pregnancy, besides creating new ethical dilemmas and new professional and parental responsibilities. Therefore, culturally sensitive health literacy programmes to empower the public and sensitise professionals need attention.

Weissella: An Emerging Bacterium with Promising Health Benefits

Weissella strains have been the subject of much research over the last 5 years because of the genus’ technological and probiotic potential. Certain strains have attracted the attention of the pharmaceutical, medical, and food industries because of their ability to produce antimicrobial exopolysaccharides (EPSs). Moreover, Weissella strains are able to keep foodborne pathogens in check because of the bacteriocins, hydrogen peroxide, and organic acids they can produce; all listed have recognized pathogen inhibitory activities. The Weissella genus has also shown potential for treating atopic dermatitis and certain cancers. W. cibaria, W. confusa, and W. paramesenteroides are particularly of note because of their probiotic potential (fermentation of prebiotic fibers) and their ability to survive in the gastrointestinal tract. It is important to note that most of the Weissella strains with these health-promoting properties have been shown to be save safe, due to the absence or the low occurrence of virulence or antibiotic-resistant genes. A large number of scientific studies continue to report on and to support the use of Weissella strains in the food and pharmaceutical industries. This review provides an overview of these studies and draws conclusions for future uses of this rich and previously unexplored genus.

     

Costs and Benefits of Subadult Plumage in Mute Swans: Testing Hypotheses for the Evolution of Delayed Plumage Maturation

In some avian species, young birds capable of reproducing diminish their prospects of doing so by molting into a subadult plumage that accurately signals their subadult status. Several hypotheses have been proposed to explain the evolution of delayed plumage maturation, but testing them usually has involved interspecific comparisons that are hard to interpret. Mute swans (Cygnus olor) exhibit two phenotypes that differ in whether the birds have a gray subadult plumage (SAP phenotype) or molt immediately into an all white adult plumage (AP phenotype). The AP phenotype results from a recessive allele on the X chromosome; both phenotypes occur in the same population and even in the same brood. We compared costs and benefits of both phenotypes in mute swans on the Chesapeake Bay in 1972-1980 and on Long Island Sound in 1982-1989. Swans with the SAP phenotype had higher survival rates from hatching to fledging than AP swans. In the fall, when AP cygnets began to molt into their white plumage, their parents often attacked and drove them off while allowing SAP cygnets from the same brood to remain on their territories for several more months. SAP males had higher survival rates during their first 2 yr of life than AP males, but AP swans bred at a younger age than SAP swans. The only proposed hypothesis for the evolution of delayed plumage maturation that can explain its occurrence in mute swans is the status-signaling hypothesis. This hypothesis argues that males with subadult plumage honestly advertise their age and subordinate status while AP swans are cheaters and engaging in dishonest communication. SAP males acquire a longer period of parental care, suffer less aggression from older birds, and increase their survival but forgo the opportunity to breed at an early age. This is a unique example of how a single gene resulted in either honest or dishonest communication, changed a bird's relationship with its parents and potential mates, and altered the bird's chances to survive and to reproduce.     

An Emergency Psychiatric Service in a General Hospital

The same extensive range of general hospital facilities should be allocated to emergency psychiatric illness as are available for other medical conditions. During the study herein reported, for every three medical consultations in the emergency ward of a large general hospital, two psychiatric consultations were requested. Over a two-year period when 24-hour coverage by psychiatric consultants was instituted, such assessments increased from 148 to 340 (during the first four months of each year); the increase in police referrals was outstanding, rising from 16 to 105. The general wards of the hospital assumed greater responsibility for further medical treatment, while committal to the mental hospital declined. Many more psychiatric patients could have been treated in the general hospital if facilities had been available. The development of an emergency psychiatric service is not an easy process and co-ordination with other psychiatric resources is required. Residents in training face situations in the emergency ward which are not encountered in any other aspect of their clinical experience.