GENETICS AND THE ETHICS OF COMMUNITY

At times decisions are made in the field of genetics that are presented as if the ethical debates have been adequately treated and so all moral considerations have been addressed, when the truth is very different. Nor is it always easy or desirable to separate the ethical, legal and social questions posed by new developments. The impact of developments in genetic science upon communities is one field of enquiry that envelops each of these areas. This paper explores the impact of genetics upon communities through focusing, in particular, upon certain developments in reproductive science. After introducing core issues and technologies, it discusses particular ethical concerns in relation to the ‘shadow’ of eugenics over such developments, before exploring the role of legislative debates and procedures in transforming social attitudes, values and hence norms. It then turns to consider debates concerning the ‘quality of life ethic’ now prevalent in healthcare, and moves on to discuss the issue of genetic discrimination – focusing, in particular, upon discrimination against disabled persons as a representative instance of the actual ethical and social/communitarian implications of the foregoing. It ends by highlighting the need to discern the ways in which the ethics of genetics is presently shaped and practised in order to discern better the particular social and communitarian implications of certain technological advances.     

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.     

Engaging Nurses in Genetics: The Strategic Approach of the NHS National Genetics Education and Development Centre

The UK government announced the establishment of an NHS National Genetics Education and Development Centre in its Genetics White Paper. The Centre aims to lead and coordinate developments to enhance genetics literacy of health professionals. The nursing program takes a strategic approach based on Ajzen’s Theory of Planned Behavior, using the UK nursing genetics competences as the platform for development. The program team uses innovative approaches to raise awareness of the relevance of genetics, working collaboratively with policy stakeholders, as key agents of change in promoting competence. Providing practical help in preparing learning and teaching resources lends further encouragement. Evaluation of the program is dependent on gathering baseline data, and the program has been informed by an education needs analysis. The challenges faced are substantial and necessitate international collaboration where expertise and resources can be shared to produce a global system of influence to facilitate the engagement of non-genetic nurses.     

The morality of human gene patents

This paper discusses the morality of patenting human genes and genetic technologies. After examining arguments on different sides of the issue, the paper concludes that there are, at present, no compelling reasons to prohibit the extension of current patent laws to the realm of human genetics. However, since advances in genetics are likely to have profound social implications, the most prudent course of action demands a continual reexamination of genetics laws and policies in light of ongoing developments in science and technology.     

Genes, race, and psychology in the genome era: an introduction

The mapping of the human genome has reawakened interest in the topic of race and genetics, especially the use of genetic technology to examine racial differences in complex outcomes such as health and intelligence. Advances in genomic research challenge psychology to address the myriad conceptual, methodological, and analytical issues associated with research on genetics and race. In addition, the field needs to understand the numerous social, ethical, legal, clinical, and policy implications of research in this arena. Addressing these issues should not only benefit psychology but could also serve to guide such thought in other fields, including molecular biology. The purpose of this special issue is to begin a discussion of this issue of race and genetics within the field of psychology. Several scholars who work in the fields of genetics, race, or related areas were invited to write (or had previously submitted) articles sharing their perspectives.     

Human Rights and the Challenges of Science and Technology

The expansion of the corpus of international human rights to include the right to water and sanitation has implications both for the process of recognizing human rights and for future developments in the relationships between technology, engineering and human rights. Concerns with threats to human rights resulting from developments in science and technology were expressed in the early days of the United Nations (UN), along with the recognition of the ambitious human right of everyone “to enjoy the benefits of scientific progress and its applications.” This comment explores the hypothesis that the emerging concepts most likely to follow recognition of the human right to water primarily involve issues of science and technology, such as access to medicines or clean and healthy environment. Many threats to human rights from advances in science, which were identified in the past as potential, have become real today, such as invasion of privacy from electronic recording, deprivation of health and livelihood as a result of climate change, or control over individual autonomy through advances in genetics and neuroscience. This comment concludes by urging greater engagement of scientists and engineers, in partnership with human rights specialists, in translating normative pronouncements into defining policy and planning interventions.     

Imaging or Imagining? A Neuroethics Challenge Informed by Genetics

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point—even a backbone—for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge.     

The Commercialization of Clinical Genetics: An Analysis of Interrelations Between Academic Centers and For-Profit Clinical Genetics Diagnostics Companies

The field of clinical genetics has undergone substantial commercialization, including the development of genetics diagnostics companies. Numerous for-profit corporations now offer genetic diagnostic services; until recently, these clinical services were provided almost exclusively through academic, not-for-profit medical centers. Some of these for-profit corporations have business and/or research relationships with academia. An evaluation of the interconnections between academia and the clinical genetics industry is an important first step in analyzing the risks and benefits of commercialization. We analyzed the personnel and business affiliations of 19 major U.S. for-profit clinical genetics diagnostics companies with universities, academic medical centers, and the scientific and medical genetics communities in a 2-year period, 1991–1992. We noted extensive connections between the for-profit sector and academia. At least 17% of high-ranking personnel and 85% of consultants for the companies had one or more academic ties. At least 68% of the companies had one or more business agreements with at least one university or academic medical center. These results raise many issues regarding the delivery of genetic medicine and the structure and function of academic medical genetics centers.     

Genetic Counseling Services and Development of Training Programs in Malaysia

Genetic counseling service is urgently required in developing countries. In Malaysia, the first medical genetic service was introduced in 1994 at one of the main teaching hospitals in Kuala Lumpur. Two decades later, the medical genetic services have improved with the availability of genetic counseling, genetic testing and diagnosis, for both paediatric conditions and adult-onset inherited conditions, at four main centers of medical genetic services in Malaysia. Prenatal diagnosis services and assisted reproductive technologies are available at tertiary centres and private medical facilities. Positive developments include governmental recognition of Clinical Genetics as a subspecialty, increased funding for genetics services, development of medical ethics guidelines, and establishment of support groups. However, the country lacked qualified genetic counselors. Proposals were presented to policy-makers to develop genetic counseling courses. Challenges encountered included limited resources and public awareness, ethical dilemmas such as religious and social issues and inadequate genetic health professionals especially genetic counselors.     

Nuclear Boundaries: Material and Discursive Containment at the Hanford Nuclear Reservation

Abstract

Current controversies in the field of genetics are provoking a reassessment of claims that race is socially constructed. Drawing upon Bruno Latour's model of how to analyse scientific controversy, this article argues that race is ‘gaining in reality’ in such a way that renders claims about its social construction tenuous and uncertain. Such claims can be seen as failing in two key regards. The first relates to changes in the way genetics is practised and promoted, which are undermining the stability of fundamental assertions that there is ‘no biological basis for race’ or that ‘race does not exist’. The second involves the confusion of analytical domains in making assertions about race. This problem stems from investing genetics research with hopes that it would reveal the ‘truth’ about race. This confidence has led to equating the ‘cultural’ with ‘bias’, while ignoring the cultural dynamics which shape race. Subsequently, I argue for making a domain claim for the primacy of cultural analysis that does not simply dismiss the possible relevance of biology or genetics to racial issues.     

Genetic counselor as a member of an outreach education team

As part of a program to improve maternal and infant health in New Jersey, the Robert Wood Johnson Foundation has funded seven regional consortia throughout the State. One of the goals of the Northern New Jersey Regional Consortium is to provide a comprehensive educational program for ambulatory care staff. An outreach education team was established that includes a perinatal nurse educator, a neonatal nurse educator, a nutritional counselor and a genetic counselor. Many issues in genetics can be initially addressed by the ambulatory care provider. A good understanding and awareness of the impact of genetic issues in patient care is needed to enhance the ability to recognize patients needing special services. Early assessment of possible risk for developmental disabilities can lead to appropriate comprehensive care and improved pregnancy outcome. Regular in-service programs, addressing the way heredity contributes to developmental disorders, the latest techniques used in genetics and the available management programs, can be provided. The present study is an evaluation of the effectiveness of the program.     

Experimental analyses of gene-brain-behavior relations: some notes on their application.

The fields of genetics and neuroscience are yielding findings useful in understanding complex behavior-environment relations. We believe that these developments in interdisciplinary basic research are of interest to applied behavior analysts because of the long history of basic findings being used by the readership of the Journal of Applied Behavior Analysis to improve everyday human activities. An awareness of contemporary developments in a range of basic research disciplines may facilitate the systematic replication of those functional relations in applied settings. In this context, we selectively review papers published in the Journal of the Experimental Analysis of Behavior and other basic research journals that relate to gene-brain-behavior relations.     

Making mental health care decisions: Informed consent and involuntary civil commitment

This paper explores the development of the informed consent doctrine as it relates to psychiatric practice. The contribution of the issues of civil commitment and the right to refuse treatment to current developments in the informed consent doctrine is also addressed. Special informed consent issues are related to specific categories of psychiatric treatments. Basic in formed consent requirements in psychiatry are seen as still in the formative stages but the constitutional law and common-law foundations for further developments are outlined. The complicated clinical, ethical, and legal issues involved in modern psychiatric treatment are stimulating new interest and concern about the informed consent doctrine throughout medical practice.     

Nursing and genetic health care

Advances in DNA technology are leading to major developments in nursing practice in clinical genetics, including the creation of new roles for nurses who care for people with genetic conditions. Application of genetic information and testing is moving genetics into the mainstream of health care. Therefore, it is anticipated that nurses in all areas of practice will become involved in the provision of information about genetic testing and assisting individuals and families in decision making and adjustment to new genetic information. This article provides an overview of the profession of nursing which may be useful to genetic counselors in the development of collaborative relationships between the two professions.     

影响感觉寻求人格特质的生物遗传因素

综述了感觉寻求人格特质的生物遗传机制的相关研究。主要从3个方面对该问题进行了探讨：（1）单胺类物质与感觉寻求人格特质的关系;（2）激素对感觉寻求人格特质的影响;（3）感觉寻求人格特质的生物遗传性     

The study of religion(s) in Western Europe III: Further developments after World War II

This essay discusses main features and developments of the study of religion(s) in Western Europe. It attempts a historical, geographical, and thematic synthesis. Part III outlines post-World War II developments with regard to journals, textbooks, and survey works. It looks at national figureheads, disciplinary boundaries and the changing fortunes of the phenomenology of religion. The series concludes by addressing selected key areas of scholarly work and current issues and concerns.     

Genetics and adoption: Forming a partnership

Genetic issues are demanding more attention in the area of public health. Adoption agencies and policymakers are beginning to address these issues where they relate to the adoption process and to the many families involved in adoption in this country. Genetic counselors need to play an active role as both educators of and consultants for adoption professionals and the families with whom they work. To facilitate a partnership between genetics and adoption we have developed a workshop intended to educate adoption professionals about the lifelong implications of genetic conditions on the adoption triad.     

Technological and medical advances: implications for health psychology.

Behavioral telehealth, health informatics, organ and tissue transplantation, and genetics are among the areas that have been affected by advances in technology and medicine. These areas illustrate the opportunities and the challenges that new developments can pose to health psychologists. Each area is discussed with respect to implications for practice, research, public policy, and education and training: recommendations are provided.