Predictors of interest in direct-to-consumer genetic testing

Direct-to-consumer (DTC) genetic testing is an increasingly available option among individuals searching for information about their health risk factors and ancestry. This study is one of the first to examine predictors of interest in DTC genetic testing. Participants read one of the three types of information about DTC genetic testing (positive only, negative only or both) and reported perceptions of and intentions to pursue testing. The information which people read, their perceptions of the benefits of testing, their perceptions of the barriers to testing and anticipated regret predicted intentions to undergo testing. Interestingly, people who read both positive and negative information did not differ from people who read only negative information in their intentions to pursue testing. We discuss the implications of these findings for predicting interest in this relatively new type of genetic testing and for designing interventions to encourage (or discourage) testing.     

Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing

Health professionals do not inform their patients’ kin about BRCA1/2 test results or genetic testing without their written consent. Thus, the onus is on women attending genetic counselling to talk to relatives about the family history and their potential increased risk. This communication process within the family is largely unexplored and provides the focus of the present study. Fifteen healthy women attending a genetics clinic for predictive testing were interviewed prior to receiving their test result and again 6 months later. A grounded theory approach was used. Findings illustrate the dilemmas women faced in juggling social roles and expectations, which had an impact on communication within the family in the context of predictive genetic testing. Tensions between responsibilities towards themselves and others and their fulfilment of social roles had an impact on who women informed and on how they did so. These factors should be considered when assigning patients the role of information provider.     

Thirty Years Later: An Oncologist Reflects on Kubler-Ross's Work

As compared with conventional vaccine production systems, plant-made vaccines (PMVs) are said to enjoy a range of advantages including cost of production and ease of storage for distribution in developing countries. In this article, we introduce the science of PMV production, and address ethical issues associated with development and clinical testing of PMVs within three interrelated domains: PMVs as transgenic plants; PMVs as clinical research materials; and PMVs as agents of global health. We present three conclusions: first, while many of the ethical issues raised by PMVs are familiar, PMVs add a new dimension to old issues, and raise some novel issues for ethicists and policy-makers; secondly, it is premature to promise broad applicability of PMVs across the developing world without having demonstrated their feasibility; thirdly, in particular, proponents of PMVs as a solution to global health problems must, as a condition of the ethical conduct of their research, define the commercial feasibility of PMVs for distribution in the developing world.     

Protecting God from Science and Technology: How Religious Criticisms of Biotechnologies Backfire

Many religious critics argue that biotechnology (such as cloning and genetic engineering) intrudes on God's domain, or plays God, or revolts against God. While some of these criticisms are standard complaints about human hubris, I argue that some of the recent criticism represents a "Promethean" concern, in which believers unreflectively seem to fear that science and technology are actually replicating or stealing God's special deity–defining powers. These criticisms backfire theologically, because they diminish God, portraying God as an anthropomorphic superbeing whose relevance and special nature are increasingly rivaled by human power.     

基因工程药物发展的历史及启示

基因工程诞生20余年,运用于医药行业,研制和开发工程药物,已取得长足进展,迄今为止,已有近100个基因工程新药上市,并有数百种正在研制和开发中,可以预计,基因工程药物的发展具有无比强大的生命力。就基因工程药物发展史进行概述,会从中得到许多启示。     

Approaching Complex Cases With a Crisis Intervention Model and Teamwork

Patients referred for genetic counseling may be in a state of crisis, feeling as though they are incapable of making decisions about the management of their pregnancy, genetic testing options and/or life planning issues. The role of the genetic counselor is to assist a patient through this crisis state by increasing the patient's understanding and by helping to facilitate decision making and adjustment to those decisions. In this paper we present a clinical genetic counseling case that was complicated by numerous medical and psychosocial issues. The wide scope of this case required the involvement of both a prenatal and a medical genetic counselor. Working as a team we utilized a crisis intervention model. Our counseling focused on identifying and isolating the issues, providing factual information, setting a time frame for decisions to be made, and encouraging social support and emotion-focused coping strategies.     

Guidelines for Writing Letters to Patients

Patient letters provide a permanent record of the genetic counseling that was provided and are unique in medical care; rarely do other health care providers send summaries written specifically to their patients and families. We surveyed genetic counseling training program directors and found that while the acquisition of patient letter-writing skills was considered important, there were no specific guidelines made available to students. To develop letter-writing guidelines, we evaluated patient letters, reviewed references on professional correspondence, surveyed the medical literature, and worked with a writing consultant. The guidelines we subsequently developed and present here include a format for writing patient letters, suggestions on presenting medical information in understandable terms, and wording considerations. These patient letter-writing guidelines are intended to serve as a guide for teaching students this important skill and as a resource for practicing health care professionals.     

Developing Standard Recommendations (Guidelines) for Genetic Counseling Practice: A Process of the National Society of Genetic Counselors

The National Society of Genetic Counselors (NSGC) supports the development of practice recommendations (guidelines) in the field of genetic counseling. This paper reviews the basic components of NSGC genetic counseling practice recommendations as well as the process for formal adoption of such documents, as approved by the Board of Directors of the NSGC.     

The Genetic Counseling Workplace—An Australasian Perspective. A National Study of Workplace Issues for Genetic Counselors and Associate Genetic Counselors

Genetic counseling in Australasia (Australia and New Zealand) has been recognized as a profession since the 1980s and has steadily expanded over the past 20 years. The demography of major cities with metropolitan sprawl and sparsely populated rural areas has led to the establishment of 3 types of genetics units: main units in cities, metropolitan outreach, and rural outreach units. A questionnaire was developed to obtain information about the needs, resources, and day-to-day operation of the genetic counselors. The questionnaire addressed the areas of resource availability, professional development, responsibility of genetic counselors in the clinical setting, and their involvement in promotion of the service and public education. Differences observed between the 3 settings in all of these areas included large clinical loads for metropolitan outreach counselors, varying responsibilities in the clinical setting, and a lack of support and resources for rural outreach counselors. Australasian Genetic counselors were found to have a significant interest in developing mechanisms for supervision and were keenly interested in maintaining credentials and professional role development. The results of this study allows genetic counselors themselves to have a better understanding of the roles of their colleagues in the different units; they can also be used by service providers in establishing and supporting genetic counselors, and identifying inequalities and deficiencies in the different practice areas.     

A genetic two-factor model of the covariation among a subset of Multidimensional Aptitude Battery and Wechsler Adult Intelligence Scale—Revised subtests

The phenotypic and genetic factor structure of performance on five Multidimensional Aptitude Battery (MAB) subtests and one Wechsler Adult Intelligence Scale—Revised (WAIS-R) subtest was explored in 390 adolescent twin pairs (184 monozygotic [MZ]; 206 dizygotic (DZ)). The temporal stability of these measures was derived from a subsample of 49 twin pairs, with test–retest correlations ranging from .67 to .85. A phenotypic factor model, in which performance and verbal factors were correlated, provided a good fit to the data. Genetic modeling was based on the phenotypic factor structure, but also took into account the additive genetic (A), common environmental (C), and unique environmental (E) parameters derived from a fully saturated ACE model. The best fitting model was characterized by a genetic correlated two-factor structure with specific effects, a general common environmental factor, and overlapping unique environmental effects. Results are compared to multivariate genetic models reported in children and adults, with the most notable difference being the growing importance of common genes influencing diverse abilities in adolescence.