Privacy and the Human Genome Project

The Human Genome Project has raised many issues regarding the contributions of genetics to a variety of diseases and societal conditions. With genetic testing now easily conducted with lowered costs in nonmedical domains, a variety of privacy issues must be considered. Such testing will result in the loss of significant privacy rights for the individual. Society must now consider such issues as the ownership of genetic data, confidentiality rights to such information, limits placed on genetic screening, and legislation to control genetic testing and its applications. There is often a conflict between individual rights to privacy and the need for societal protection.     

Talking about Disability in Prenatal Genetic Counseling: A Report of Two Interactive Workshops

Women are commonly offered testing in pregnancy to determine the health of their baby. An important component of informed decision-making about prenatal testing is provision of relevant, accurate, meaningful information concerning the conditions that are being tested for—many of which, such as Down syndrome, are associated with a varying degree of physical and intellectual disability. A range of health professionals, including genetic counselors, may provide information and support throughout the testing process, but available data suggest that discussion of disability is frequently absent or limited. To investigate genetic counselors’ perceptions of this situation and identify potential barriers to discussion we facilitated interactive workshops at the 2007 National Society of Genetic Counselors Annual Education Conference (NSGC) and the 2008 European Meeting on Psychosocial Aspects of Genetics (EMPAG). Working groups identified relevant psychosocial issues and impediments to discussion (NSGC) or used a two-part scenario to promote discussion (EMPAG) and reported findings in notes and a closing plenary discussion. Inductive content analysis revealed that participants considered informed decision making to be a major reason for presenting information about disabilities in prenatal genetic counseling and endorsed the value of including information about daily life with Down syndrome and other disabilities. However, they identified three broad types of impediments to such discussion: counseling issues concerning the most appropriate manner to discuss disability under the complex circumstances of prenatal genetic counseling, less than optimal training and experience in addressing these issues, and perceived limitations in the participants’ knowledge and understanding of life with disability. Our analysis of the responses from the workshop participants and additional thoughts on these issues have led us to develop recommendations for further research, training and clinical practice.     

Assessing the Effect of Vendorship:

This paper details the conceptualization, methodology, and results of a quasi-experimental evaluation on the impact of legislation granting vendorsh~p to social workers in one state. Vendor- eligible social workers were surveyed at five months and seventeen months following the enactment of such legislation. Questions which specifically address the issues of cost and access were investigated. Results reveal that vendorship has a significant impact on both of these variables. Limitations in study methodology are presented, and directions for further research discussed.     

《管子》立法思想刍议

在《管子》系统丰富的"以法治国"思想理论体系中,立法思想占有重要的地位。它较为全面地阐述了诸如君主独享立法权,立法应遵从天道、顺应民心,因时因俗而变,宽严适度,公开透明等一系列关于立法的基本原则问题。尽管有其历史局限性,但《管子》立法思想所呈现出的超越时代的理性光芒,至今依然熠熠生辉,极具借鉴意义。     

Uptake of BRCA1 Genetic Testing in Adult Sisters and Daughters of Known Mutation Carriers in Norway

This study was undertaken to examine transmission of information to first-degree relatives of BRCA1 mutation carriers and uptake of genetic testing. The intention was to consider revision of current legislation related to privacy if information on life-saving health care was not disseminated to at-risk family members. The Norwegian Radium Hospital provides clinical genetics services for families at high risk for hereditary breast and ovarian cancer. Together with major hospitals nationwide we provide medical surveillance. Nearly all expenses are covered by the National Health insurance. Because of the high number of families with founder mutations in BRCA1, we are in a unique position to gather information about these groups. Within a consecutive series, we identified 75 BRCA1 mutation carriers and registered information transmission and uptake of genetic testing 6 months or more after the index mutation carriers had been informed about their mutation status. These 75 BRCA1 mutation carriers had 172 living first-degree relatives, aged 18 years or older (84 females, 88 males). Forty-four out of 54 (81.5%) of females over 30 had opted for genetic testing. The testing rate among all relatives was 43%. At any age, 63% of the females underwent genetic testing compared with 24% of the males (p<0.05). The overwhelming majority of adult females at risk opted for genetic testing. Males with daughters more frequently than males without daughters asked for testing. The findings give neither reason to reconsider legislation on privacy, nor for us to consider more aggressive methods of contacting relatives.     

Normativity,Guardianship, and the Elderly

The concept of guardianship, its associated principles, distinctions, and articulation of the legal needs of the elderly are introduced via a review of well-canvassed criticisms of Canadian guardianship legislation. Claims that the reformed legislation of Alberta, Quebec, and British Columbia represent models of adequate adult guardianship compared with traditional (archaic lunacy) law are examined. This paper argues that these renovated models exhibit a dubious normative advance over traditional legislation. Specifically, the normative presuppositions of the reformed legislation, such as, restriction to an autonomy-paternalism framework, and the norms of the liberal individual and state, obscure important issues in at least two key areas which challenge the models' assumptions; namely, assessment and legal competence and assessment and need. The development of guardianship laws and of social arrangements that are more responsive to the life experiences of the elderly requires critical re-articulation of the nature of individuals and their communities.     

Cancer Risk Assessment Using Genetic Panel Testing: Considerations for Clinical Application

With the completion of the Human Genome Project and the development of high throughput technologies, such as next-generation sequencing, the use of multiplex genetic testing, in which multiple genes are sequenced simultaneously to test for one or more conditions, is growing rapidly. Reflecting underlying heterogeneity where a broad range of genes confer risks for one or more cancers, the development of genetic cancer panels to assess these risks represents just one example of how multiplex testing is being applied clinically. There are a number of issues and challenges to consider when conducting genetic testing for cancer risk assessment, and these issues become exceedingly more complex when moving from the traditional single-gene approach to panel testing. Here, we address the practical considerations for clinical use of panel testing for breast, ovarian, and colon cancers, including the benefits, limitations and challenges, genetic counseling issues, and management guidelines.     

Ethical considerations in the testing of biopharmaceuticals for adventitious agents

Safety testing of biological pharmaceuticals is often carried out by contract testing laboratories which perform these tests on behalf of the drug’s developer. These laboratories are confronted with a number of ethical issues related to selling their services, maintaining confidentiality, and the handling of results. This paper outlines these issues, and, by way of illustration, discusses how one such laboratory addresses them.     

Distinguishing genetic from nongenetic medical tests: Some implications for antidiscrimination legislation

Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation is severely flawed because of the difficulty in distinguishing genetic from nongenetic tests. In addition, barring the use by insurance companies of a genetic test but not a nongenetic test (conceivably for the same multifactorial disease) raises issues of fairness in health insurance. These arguments suggest that ultimately the problems arising from genetic discrimination cannot be solved by narrowly focused legislation but only by a modification of the entire health care system.     

The unfolding meaning of intentionality and horizon in phenomenology

After a brief review of recent federal education legislation, in particular the No Child Left Behind Act, we present a model for educational assessment that does more than focus upon high-stakes testing. This model of educational assessment represents a mixed methods approach that school districts can adopt to assist them in becoming more proactive with respect to assessment. It utilizes both qualitative and quantitative research methods, is an example of participatory action research, and demonstrates the value of this mixed methods approach to assessment. Utilizing this model gives a district a sense of empowerment and control and, most important, provides a better understanding of the real issues and challenges that a school district faces. It provides school districts with an accurate assessment of the quality their schools by utilizing a comprehensive and longitudinal perspective that accurately reflects how successful the district is in educating its students.     

The effects of 'non-directive' questioning on an anticipated decision whether to undergo predictive testing for heart disease: an experimental study

This study investigates how individuals can be helped to make decisions about predictive genetic testing. Participants (n = 120) rated how likely they would be to opt for predictive testing for heart disease if it were available, and other variables such as anxiety about heart disease. They received information on predictive testing for heart disease and ratings were repeated. Participants were then randomly allocated to one of three groups and focused on the personal relevance of positive issues or negative issues which had been mentioned as part of the standardised information previously given. The third group focused on issues irrelevant to testing for heart disease. The form of questioning used in this focusing manipulation was intended to model the processes involved in non-directive questioning. Results showed a significant increase in likelihood of testing in the positive group, and a significant decrease in the negative group. There was also a significant decrease in rated anxiety about heart disease and perceived severity of an increased susceptibility to heart disease of the negative group relative to the positive and control groups. The results may have implications for the ways in which pre-test counselling is carried out.     

Evolution of Different Dual-use Concepts in International and National Law and Its Implications on Research Ethics and Governance

This paper provides an overview of the various dual-use concepts applied in national and international non-proliferation and anti-terrorism legislation, such as the Biological and Toxin Weapons Convention, the Chemical Weapons Convention and United Nations Security Council Resolution 1540, and national export control legislation and in relevant codes of conduct. While there is a vast literature covering dual-use concepts in particular with regard to life sciences, this is the first paper that incorporates into such discussion the United Nations Security Council Resolution 1540. In addition, recent developments such as the extension of dual-use export control legislation in the area of human rights protection are also identified and reviewed. The discussion of dual-use concepts is hereby undertaken in the context of human- and/or national-security-based approaches to security. This paper discusses four main concepts of dual use as applied today in international and national law: civilian versus military, peaceful versus non-peaceful, legitimate versus illegitimate and benevolent versus malevolent. In addition, the usage of the term to describe positive technology spin-offs between civilian and military applications is also briefly addressed. Attention is also given to the roles civil society and research ethics may play in the governance of dual-use sciences and technologies.     

Implementation intention and planning interventions in Health Psychology: Recommendations from the Synergy Expert Group for research and practice

The current article details a position statement and recommendations for future research and practice on planning and implementation intentions in health contexts endorsed by the Synergy Expert Group. The group comprised world-leading researchers in health and social psychology and behavioural medicine who convened to discuss priority issues in planning interventions in health contexts and develop a set of recommendations for future research and practice. The expert group adopted a nominal groups approach and voting system to elicit and structure priority issues in planning interventions and implementation intentions research. Forty-two priority issues identified in initial discussions were further condensed to 18 key issues, including definitions of planning and implementation intentions and 17 priority research areas. Each issue was subjected to voting for consensus among group members and formed the basis of the position statement and recommendations. Specifically, the expert group endorsed statements and recommendations in the following areas: generic definition of planning and specific definition of implementation intentions, recommendations for better testing of mechanisms, guidance on testing the effects of moderators of planning interventions, recommendations on the social aspects of planning interventions, identification of the preconditions that moderate effectiveness of planning interventions and recommendations for research on how people use plans.     

Religious Knowledge and Its Use in Psychiatry

Clinicians' knowledge of and sensitivity to religious issues have been questioned. The present study measures religious knowledge and willingness to utilize such knowledge in clinical practice. We administered a 41-item questionnaire testing religious knowledge and willingness to utilize such knowledge to 28 psychiatric clinicians. The mean religious knowledge score was 61% of the total possible score. In spite of low scores, only 33% of clinicians consistently refrained from initiating discussions of religious issues. Results support a low level of religious knowledge but do not support a contention that clinicians are insensitive to religious issues.     

Studying judgement: Some comments and suggestions for future research

Three general issues emerge from the preceding papers: a confusion between judgement and related activities such as decision making, problem solving, and attitudes; differences in the underlying assumptions about the nature of judgement; and different approaches for testing the adequacy of theories human judgement. The implications of these issues for studying human judgement processes and for future research priorities in this area are briefly discussed.     

A Differentiated Legal Approach to the Effects of Spousal Abuse on Children

Summary

In the past decade judges have started to recognize the destructive effects of spousal violence on children, but too many judges and justice system professionals still fail to take adequate account of spousal abuse when dealing with child related issues. Courts need to take a “differentiated” approach to spousal abuse, one that recognizes its different forms, nature and effects on adults and children, with a continuum of responses ranging from ordinary visitation, through supervision of exchanges or visitation, to termination of visitation. Canada should enact legislation that explicitly recognizes spousal abuse as a factor in child related disputes, increase education about domestic violence for judges and other justice system professionals, and provide more support for services such as supervised visitations programs. While this article focuses on Canadian developments and case law, there are similar issues in other countries.     

Design and Development of the ITC Guidelines on Computer-Based and Internet-Delivered Testing

This article describes the design and development of the International Test Commission's (ITC, this issue) Guidelines for Computer-Based and Internet-Delivered Testing. It examines some of the reasons why the ITC Council decided to invest in a program of research, consultation, and conferences designed to develop internationally agreed-on guidelines specifically aimed at computer- and Internet-based testing and describes the methodology involved in developing and disseminating the guidelines. Through a process of reviewing relevant literature and organizing conferences and wide consultations, a set of internationally recognized guidelines that highlighted good practice issues in computer/Internet testing were developed. The guidelines will raise awareness among all stakeholders in the testing process of what constitutes good practice in computer/Internet testing and can be used as a benchmark to set local standards and guidelines. Further issues are raised from the research, not least the need to ensure that with advances in technology and science comes the updating of training in tests and testing to keep up with such advances.