Attitudes and Beliefs of African-Americans Toward Genetics,Genetic Testing,and Sickle Cell Disease Education and Awareness

Research among African-Americans indicates this population perceives sickle cell (SCD) to be a serious disease and sickle cell trait (SCT) screening an important intervention. However, studies have consistently demonstrated a lower than desired uptake of SCD education, inadequate knowledge regarding personal and family trait status, and a low perceived susceptibility of giving birth to a child with the disease. We examined general attitudes and beliefs regarding genetics and genetic testing including prenatal testing and newborn screening; we used this information as the foundation to more specifically assess attitudes and beliefs regarding SCD and perceived barriers to SCD education and awareness. Thirty-five African-American adult men and women participated in one of four focus groups. Thematic analysis identified that both prenatal testing and newborn screening are acceptable forms of genetic testing. Based largely on their personal experiences, participants possessed an understanding of the natural progression of SCD but had a limited understanding of the inheritance and probable risk of giving birth to a child with the disease. Barriers to education and greater awareness of SCD were classified as personal, familial, and societal. Community based interventions focused on sharing the stories of individuals with first-hand experiences with SCD should be considered.     

Young Adults’ Pre-Existing Knowledge of Cystic Fibrosis and Sickle Cell Diseases: Implications for Newborn Screening

Parental distress following newborn screening is thought to result from inadequate preparation for screening results which can result in maladjustment to screening results after birth. Although prior awareness of relevant genetic disorders such as cystic fibrosis and sickle cell diseases, and preparedness for screening is suggested to enhance information uptake and reduce parental distress, little is known about how young adults’ prior knowledge prepares them for screening or affects the assimilation and retention of screening information. Thirty-four young adults, without familial genetic disease or screening experience took part in one of seven focus groups which examined knowledge of cystic fibrosis and sickle cell diseases and ability to assimilate new disease information. Thematic analysis revealed that adults had limited understanding of how cystic fibrosis and sickle cell diseases were inherited or how symptoms manifest, leaving them inadequately prepared for screening results if they do not engage with information interventions. Further, they selectively assimilated new disease information and had difficulty understanding new information in the absence of prior disease knowledge. Young adults’ prior disease knowledge should be considered within a newborn screening context and written materials should consider the inclusion of carrier statistics to improve information relevance.     

AIDS as Threat,AIDS as Stigma correlates of AIDS beliefs among the Dutch general public

Abstract

The central question of this article is whether findings about social and cultural correlates of preventive and public attitudes towards AIDS that were found in other western countries are also valid for the Netherlands. Answering this question contributes to the international accumulation of empirical knowledge about attitudes of the general public and might as well be relevant for the international transfer of knowledge about the public into assumptions of information campaigns. Eight hypotheses derived from international literature were tested on data of the 1987 module of “Cultural changes in the Netherlands,” a general opinion survey of the Dutch population (16-80 years old). In line with international research, younger age and more education are correlated with preventive knowledge and social acceptance; however sex and urbanization do not make a difference in the Netherlands As expected, a negative attitude towards homosexuals is related to a lack of acceptance of people suffering from AIDS, support for mandatory screening for HIV, as well as a lack of preventive knowledge. Also in accordance with earlier research, “authoritarian attitudes” are far more important in explaining the public attitudes than beliefs about AIDS as an individual threat.     

Avoiding Empty Rhetoric: Engaging Publics in Debates About Nanotechnologies

Despite the amount of public investment in nanotechnology ventures in the developed world, research shows that there is little public awareness about nanotechnology, and public knowledge is very limited. This is concerning given that nanotechnology has been heralded as 'revolutionising' the way we live. In this paper, we articulate why public engagement in debates about nanotechnology is important, drawing on literature on public engagement and science policy debate and deliberation about public policy development. We also explore the significance of timing in engaging the public, and we make some suggestions concerning how to effectively engage publics. Our conclusions indicate the significance of scientific researchers, policy makers and representative consumer groupings in public reasoning towards a better public policy framework for debate about technological development.     

Stigma, obesity, and the health of the nation's children

Preventing childhood obesity has become a top priority in efforts to improve our nation's public health. Although much research is needed to address this health crisis, it is important to approach childhood obesity with an understanding of the social stigma that obese youths face, which is pervasive and can have serious consequences for emotional and physical health. This report reviews existing research on weight stigma in children and adolescents, with attention to the nature and extent of weight bias toward obese youths and to the primary sources of stigma in their lives, including peers, educators, and parents. The authors also examine the literature on psychosocial and physical health consequences of childhood obesity to illustrate the role that weight stigma may play in mediating negative health outcomes. The authors then review stigma-reduction efforts that have been tested to improve attitudes toward obese children, and they highlight complex questions about the role of weight bias in childhood obesity prevention. With these literatures assembled, areas of research are outlined to guide efforts on weight stigma in youths, with an emphasis on the importance of studying the effect of weight stigma on physical health outcomes and identifying effective interventions to improve attitudes.     

Attitudes Toward Fragile X Mutation Carrier Testing from Women Identified in a General Population Survey

Fragile X syndrome is primarily due to a CGG repeat expansion found in the FMR1 X-linked gene. In a previous study, we conducted focus groups with women to assess their attitudes towards fragile X carrier screening. In this follow-up study, we conducted in-depth interviews of general population reproductive-age women who were identified as carriers. We explored their attitudes toward testing for carrier status of the fragile X mutation. These women underwent screening primarily to participate in a research project rather than in search of a diagnosis for specific symptoms. As such, these women were wholly unprepared for positive carrier results. Their responses about their results and carrier screening, in many cases, were being worked out over the course of the interview itself. The most salient finding of this work is the apparent lack of relevance of carrier status to these women. Many expressed that although the information could be relevant in the future, it is not relevant at this stage of their lives in terms of family planning (either with respect to having unaffected offspring or to premature ovarian failure) and personal relationships. Although issues of abortion seemed prominent in the focus groups, we found that carrier status did not have an apparent effect on women’s attitudes about termination. We hypothesize this may be related to the fact that women had not processed their new carrier status and had not related it to previously-formed personal opinions. The findings of this work have significant implications for genetic counseling and population screening. Genetic counselors should be mindful that general population women may not recognize the immediate importance of their carrier status even when literature is provided and discussed prior to providing a sample. As part of comprehensive genetic counseling, counselors should identify the reproductive life stage of the woman receiving the new information and help her identify when this information would be more meaningful in her life. Counselors can assist in setting up a personalized road map with specific types of services that will be more applicable to the woman as her carrier status becomes more relevant.     

Neuromarketing Research Practices: Attitudes,Ethics, and Behavioral Intentions

As a new addition to the marketing research toolbox, neuromarketing science has given rise to a variety of questions relevant to consumer perceptions of this nascent area of investigation. Neuromarketing researchers are dependent on consumer involvement as research participants, and finding means to educate the public about neuromarketing is a priority for professionals working in the field. This article describes the results of two online questionnaire studies focused on the role of personal constructs presumed to underlie perceptions of neuromarketing research. The findings point to neuromarketing research knowledge, attitudes toward science, attitudes toward technology, and ethical ideology as important factors linked to neuromarketing research attitudes, perceptions of the ethicality of neuromarketing research, and willingness to participate in neuromarketing studies. We discuss the implications of our findings for educating the public about neuromarketing research and encouraging research participation, and we conclude by suggesting directions for future research.     

Japanese Millennials and Intersex Awareness

This paper investigates the awareness, attitudes, and opinions of Japanese millennials about intersex people. This research attempts to fill a gap in extant literature concerning the intersex in Asia via an exploratory analysis. The LGBTQ(I) discourse of Japan mimics that of the west; often the “I” is totally disregarded. Here, a snapshot of Japanese millennial awareness is offered using survey results collected from a convenience sample of Japanese college students. Findings suggest that the understanding of what the term “intersex” means is limited. An interesting argument addressing the differential treatment of one’s sex versus one’s sexuality via queering is offered, alongside proposals for further exploration that may be conducted in the future. In addition, a comparison to Western awareness and understanding would be an appropriate next step.     

Empowerment,Leadership, and Sustainability in a Faith-Based Partnership to Improve Health

Community-based participatory research is a noted approach for improving community health and reducing health disparities. Community partnerships can serve as a catalyst for change in public health efforts. This article will apply empowerment theory and sustainability principles to an existing faith-based partnership. BRANCH Out is a partnership among 13 African American churches, the City of Milwaukee Health Department—Community Nutrition, and the Medical College of Wisconsin. The partnership goal was to change inaccurate perceptions, knowledge and negative attitudes, and behaviors about chronic disease and promote healthy youth leadership. Faith-based empowerment can occur at the individual, organizational, and community level. BRANCH Out demonstrates how partnerships can be sustained in multiple ways. The partnership also highlights the unique contributions of churches to community health outcomes.     

The Role of Attitudes and Awareness in Anti-Violence Education

Summary

Most interventions for the prevention of violence in relationships aim at attitudes and awareness. Prevailing attitudes in our society already condemn violence, however, and wife assault is viewed as particularly serious. Some research shows that perpetrators have attitudes more supportive of violence than other people do, but the link between attitudes and behavior can be complex. Trying to persuade people to change their attitudes in one direction can lead instead to people taking more extreme versions of their existing attitudes. Some interventions that raise awareness and promote availability of services appear to teach participants to take the problem less seriously. Most students report neither undesirable attitudes nor low awareness of violence in relationships. But their behavior appears inconsistent with their reported attitudes and awareness. If interpersonal violence has its roots in a problem more fundamental than the views of contemporary society, then anti-violence education based on attitudes and awareness will have limited benefits, and possibly some harmful effects. This article encourages a cautious rethinking of assumptions underlying current anti-violence education and alternative theories of violent behavior. It offers some suggestions for ways to reduce violent behavior, and encourages integration of violence prevention efforts into regular curricula and extra-curricular activities.     

Understanding Public Attitudes Toward Tobacco Harm Reduction: The Role of Attitude Structure1

The present research examines whether and to what extent the underlying structure of attitudes toward harm reduction and specific reduced‐exposure products contributes to an understanding of public attitudes toward harm reduction. Past research has focused on the extent to which some attitude objects are primarily affective or cognitive. Using survey data from a 5‐state Upper Midwest sample, we tested the relevance of 4 pertinent properties of attitudes for predicting overall attitudes toward tobacco harm reduction: affective and cognitive bases of attitudes; knowledge; experience with smoking and reduced‐harm products; and affective/cognitive consistency. We found that feelings about harm reduction are most predictive of overall attitudes toward harm reduction and specific reduced‐harm products. Theoretical and policy implications are discussed.     

National evaluation of US newborn screening system components

Newborn screening has existed as a state-based public health service since the early 1960s. Every state and most territorial jurisdictions have comprehensive newborn screening programs in place, but in the United States a national newborn screening policy does not exist. This results in different administrative infrastructures, screening requirements, laboratory and follow-up services, medical management approaches, and related activities across the country. Federal initiatives and support have contributed to limited evaluations of various aspects of individual newborn screening programs at the national level, but funding is an issue. The national evaluation strategies have taken various forms, all with the intent of improving the screening system through review of actions taken and suggestions for future improvements. While participation in the national evaluation effort for newborn screening laboratory practices includes all US programs, and this has aided in improving quality and harmonizing protocols, other national evaluation activities have been only moderately successful. National data reporting of quality indicators for various program elements must be comprehensive and timely, and the elements must be universally accepted in order to meet the evaluation and improvement needs of the national newborn screening system. A comprehensive real time national evaluation activity will likely require additional resources and enforcement incentives. Limited federal actions through grant incentives and selected reporting requirements provide a possible means of stimulating programs to participate in national harmonization efforts.     

NICHD research initiative in newborn screening

Recent changes in genetics research have created new opportunities to improve the scope and quality of newborn screening services. Changes in newborn screening should be supported and directed by an organized program of research. The NICHD Research Initiative in Newborn Screening includes the development of systematic methods to identify additional conditions appropriate for newborn screening; development and testing innovative interventions and treatments to improve outcomes; education of the provider workforce; development and implementation of appropriate information and communication systems for parents and providers; and, sponsoring an ongoing program of research and research training. Future needs will include the development of a national translational research infrastructure, prevention research and research into behavioral and social sciences issues. The NICHD Research Initiative in Newborn Screening is expected to be an ongoing and vital initiative that adapts itself to new scientific findings, technological developments, changes in the public and personal health care system, and our evolving understanding of the needs of affected individuals, families and the community.     

Disparities in Current and Future Childhood and Newborn Carrier Identification

International carrier testing guidelines discourage testing in childhood to preserve autonomous decision making and prevent detrimental psychosocial consequences. Despite the discouragement of autosomal recessive carrier testing during childhood, some sickle cell disease (SCD) or cystic fibrosis (CF) carriers are incidentally identified through UK and international newborn screening (NBS). This creates a scenario where parents may have knowledge of their newborn’s, but not older child’s carrier status. In addition, there is wide variation in the identification of CF and SCD carriers due to the screening technologies implemented by different NBS programs. The current and future availability of childhood testing are determined to some extent by the impact of testing on children and parents (whether this is beneficial or detrimental to wellbeing). However empirical research informing carrier guidance and practice is conflicting. Echoing previous calls, this discussion highlights the need for further qualitative and longitudinal research with children to consider the psychosocial impact of carrier testing on children and role of disclosure from parents on adaptation to results. It is recommended that professionals aim to minimize harms resulting from carrier identification by providing support for parents and children following NBS. Support for non-genetics specialists from genetic counselors to enable discussion of carrier results with children is suggested.     

Obsessive-Compulsive Disorder: Current Views

Obsessive-compulsive disorder has been of central interest to psychoanalysis since Freud's early papers, most particularly in the “Rat Man” case. This early literature spelled out with great clarity the presumed development, psychodynamics, and meaning of obsessional and compulsive symptoms. Unfortunately, since Anna Freud's 1969 review of the subject, virtually nothing has appeared in the psychoanalytic literature that has added to our understanding of the disorder or enhanced the very limited therapeutic influence of psychoanalysis in such cases. Meanwhile, there has been an avalanche of contributions from biological psychiatry and behavioral psychology that have propounded different theories of pathogenesis and have laid claim to significant therapeutic effectiveness. If psychoanalysis is to have credibility in this field, it will have to enlist itself in multidisciplinary research efforts directed toward enriching our knowledge about the psychodynamics and the biological substrate of this illness (more common than once believed) and the efficacy of our efforts to treat it.     

Women's Future Travel, Driving, and Transit Use

Women's future community travel needs have not yet been analyzed to determine how changes in society will affect or be affected by women's car driving and public transit use. The author infers from limited available data that automobiles will accommodate more of women's travel needs because transit might not satisfy many trip requirements, including those for mental well-being and personal security and for continued homemaking and childrearing responsibilities. Insensitive government restrictions on women's auto use should be discouraged; positive investment and management strategies for automobile and transit systems should be encouraged to help women travelers. Research, employment efforts, and increased public input within the transportation industry are among the recommended long term strategies to improve industry and public awareness and to foster constructive actions on the behalf of women.     

A Systematic Review of the Effects of Disclosing Carrier Results Generated Through Newborn Screening

Evidence on the effects of disclosing carrier results identified through newborn screening (NBS) is needed to develop effective strategies for managing these results, and to inform debate about contradictory policies governing genetic testing in minors in the context of NBS relative to clinical care. This is likely to be even more important as technological opportunities for carrier identification through NBS increase. We report the results of a systematic review of evidence related to the generation of carrier results through NBS to summarize what is known about: (1) the outcomes associated with these results; (2) the best strategies for providing information and follow-up care to parents; and (3) the impact they have on reproductive decision-making. Our study expands the existing body of knowledge and identifies gaps in the evidence base. As key players in the management of carrier results clinically, genetic counselors are well positioned to engage in formative research and policy development in this area.     

Newborn Screening: Education,Consent, and the Residual Blood Spot. The Position of the National Society of Genetic Counselors

Newborn screening (NBS) is a minimally invasive lifesaving test. There is currently no federal mandate for NBS, thus states determine their own screening panel based on the recommendations of the Secretary’s Advisory Committee on Heritable Disorders in Newborn and Children (SACHDNC), which was recently re-chartered as the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC). After NBS is completed, a couple of residual blood spots remain. While some states allow these spots to be used for public health and scientific research purposes, parents are not always informed about these additional uses. This paper addresses the National Society of Genetic Counselors’ (NSGC’s) position about NBS and blood spot storage/use and the rationale for these positions. The National Society of Genetic Counselors strongly supports newborn screening for the uniform screening panel of conditions recommended by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. NSGC also supports storage and use of blood spot samples by newborn screening laboratories and transparent policies that govern these activities.     

Policy Frames, Metaphorical Reasoning, and Support for Public Policies

This article evaluates the predictive value of a new theory for understanding public support for alternative solutions to policy problems, which we call policy metaphors. A policy metaphor represents a particular form of cognitive framing that makes use of commonly understood social institutions and judgments about their effectiveness to form "archetypes" against which proposed solutions to new policy problems are compared. We test the extent to which both understanding of and preference for particular policy frames predicts the nature and strength of policy choices by a representative sample of the American public. After controlling for factors that past research has shown to be important in understanding public opinion, including general partisan and ideological attitudes, self-interest, political values, and emotions, the cognitive frames specified by the general theory of policy metaphors are shown to strongly predict public support for hypothetical solutions to three different policy problems. These frames also predict support for President Clinton's 1993–94 health care reforms after controlling for those same conventional predictors. Most importantly, we demonstrate that these cognitive frames help constrain the beliefs of even the least politically aware members of the general public. Discussion centers on the implications of this new approach for understanding public opinion.     

Empathy,social skills,and other relevant cognitive processes in rapists and child molesters

Considerable theoretical and research efforts have gone into formulations which suggest that sex offenders differ from nonoffenders in their processing of sexual material. This article reviews the literature concerning patterns of empathy, social skills, and other cognitive processes (i.e., theories, attitudes, and distorted cognitions) of incarcerated sex offenders or those who have identified themselves as sex offenders. We choose these three general topic areas because many see these phenomena as central to the understanding of sex offending. First, we present general empirical findings relevant to the phenomena of empathy, social skills, and distorted cognitions. We then move to a discussion of specific cognitive models that have been offered to account for the data. We briefly discuss the available data relevant to these cognitive models. The next section of the article reviews the treatments that have been applied to sex offenders with the stated goal of modifying the processes we are examining. Our final section attempts to summarize and highlight some of the identified problems and weaknesses in the study of the aforementioned processes in sex offending. We argue that too little attention has been paid to basic cognitive psychology and the role that cognitions or conceptualizations can play in promoting our understanding of the sex offender. We suggest that following the information processing approach as a generalized model will help integrate and direct research efforts.