Ethics and research assessing the relative roles of genes and the environment

Research on the interaction of genes and the environment is revealing that many human diseases have both genetic and environmental components. Even traditional "environmental" diseases, such as infections, appear to interact with genetic components in the human host. Environmental genetics research will inevitably increase understanding of individual susceptibilities to toxic exposures in the environment and harmful side effects of medications; therefore, it has great promise for improving the prevention and treatment of human diseases. However, realizing the benefits of this research requires careful attention to ethical issues that are particularly relevant in this context. This article reviews some of the most pressing issues related to research design and methods, as well as from the application of research results (e.g., workplace genetic screening and legal toxic torts, personal medical responsibility, and the relationship between genetics and public health measures).     

Response to Commentaries:

It is time to bring nature (genetics) together with nurture (environment) in the study of social development. Following a brief overview of behavioral genetic theory and methods, three examples are described of new genetic research especially relevant to social developmentalists. First, initial research findings on three key domains of social development (attachment, empathy, and social competence) suggest that genetic factors contribute to individual differences in social development. Second, research on widely used measures of social environment implicates a genetic contribution, which opens up new directions for research at the interface of nature and nurture in social development. Third, by the turn of the century, it is predicted that behavioral genetic research will be conducted using DNA markers that assess genetic variation among individuals directly rather than resorting to indirect estimates based on twin and adoption methods. This will revolutionize behavioral genetic research and make it more accessible and applicable to developmentalists. As a first step in the direction of behavioral genetics, social developmentalists are encouraged to include siblings in their research.     

Ethics in population-based genetic research

Population-based genetic research, including genetic epidemiology, shows tremendous potential to elucidate the role of genes as causal factors in complex and common human diseases. Like all research with human subjects, full realization of these benefits requires careful attention to its ethical conduct, establishing an appropriate balance between individual protections and the advancement of scientific and medical knowledge. This article reviews the growing literature on genetics research and ethics to describe some of the fundamental ethical issues in population-based genetics research, including research design, recruitment and informed consent, and dealing with research results. Its focus is on areas where consensus is forming and where future work is needed.     

Ethics in behavioral genetics research

As research in behavioral genetics uncovers the genetic contribution to human behavior, it will undoubtedly further our understanding of normal human variation in many behavioral traits, such as personality, intelligence, and sexuality. This research also shows great potential for the diagnosis, treatment, and prevention of mental illnesses. Recent findings underscore this potential and document the increasing validity of research methods--methods that in the past have led to mistaken inferences about genes "for" violent behavior and homosexuality. Although all research with human subjects requires adequate attention to its ethical aspects, certain ethical issues involved with behavioral genetics are particularly acute and deserve careful attention. This article reviews these selected major ethical issues arising in (1) the conduct of behavioral genetics research; and (2) the application of its research findings. While some of the ethical concerns in the latter category are likely to be of substantial importance and animate considerable popular concern, they currently fall outside the realm of traditional research review. Determining how to deal with these concerns should be a focus of future scholarly work.     

Values in Middle Childhood: Social and Genetic Contributions

Theories of value development often identify adolescence as the period for value formation, and cultural and familial factors as the sources for value priorities. However, recent research suggests that value priorities can be observed as early as in middle childhood, and several studies, including one on preadolescents, have suggested a genetic contribution to individual differences in values. In the current study, 174 pairs of monozygotic and dizygotic seven‐year‐old Israeli twins completed the Picture‐based Value Survey for Children (PBVS–C). We replicated basic patterns of relations between value priorities and variables of socialization—gender, religiosity, and socioeconomic status—that have been found in studies with adults. Most important, values of Self‐transcendence, Self‐enhancement, and Conservation, were found to be significantly affected by genetic factors (29 percent, 47 percent, and 31 percent, respectively), as well as non‐shared environment (71 percent, 53 percent, and 69 percent, respectively). Openness to change values, in contrast, were found to be unaffected by genetic factors at this age and were influenced by shared (19 percent) and non‐shared (81 percent) environment. These findings support the recent view that values are formed at earlier ages than had been assumed previously, and they further our understanding of the genetic and environmental factors involved in value formation at young ages.     

Environmental shifts for social work: A principles approach

Miller SE, Hayward RA, Shaw TV. Environmental shifts for social work: A principles approach The social work profession is rooted in a history of addressing the needs of vulnerable populations. Generally, however, this history has not extended to issues relating to the natural environment. Building on a framework of environmental justice, this article proposes a shift from the artificial separation of the social and natural environments in its person‐in‐environment focus to an expanded holistic understanding of the dynamic interplay between human society and the natural environment. It examines issues surrounding environmental and ecological justice, and proposes a principles approach to move the profession towards a paradigm of environmental justice using as its template the 17 Principles of Environmental Justice adopted by the First National People of Color Environmental Leadership Summit in the USA in 1991. It discusses the value of these principles in enhancing social work's capacity to address issues of environmental concern. It proposes that, with greater awareness of the effects of environmental issues on high‐needs populations, the profession would be better able to balance environmental and human concerns.     

Parenting is genetically influenced: What does that mean for research into child and adolescent social development?

Individual differences in child and adolescent social development are due to a combination of variation in genetic propensity and environmental conditions. That is, variation in social domains like bullying-victimization, loneliness and pro- and antisocial behaviour is genetically influenced to a substantial extent. That is not to say that social contexts also do not play an important role in shaping social development. Indeed, parenting and parent–child relationship quality have been associated with various aspects of social development. What complicates matters is that environmental conditions – including parenting – are under genetic influence as well. Genetic influence on parenting has not received sufficient attention in the literature on social development although it likely biases estimates of parental effects on offspring social development. To change this situation, I review recent twin and molecular research on genetic influence on parenting and discuss why genetically-informed studies improve and enrich contemporary research into social development. The aim of this topic review is to provide an accessible introduction to genetics of parenting and encourage genetically-informed research into social development.     

What a Tangled Web We Weave: Ethical and Legal Implications of Deception in Recruitment

Deception in human subject research is neither uncommon nor prohibited. The use of deception in the recruitment phase of clinical research has received relatively little attention. Given that informed consent is foundational to human subject research, the practice of misrepresenting the study purpose in clinical research would seem to contradict one of the fundamental tenets of ethical human subjects research. Using the example of prodromal psychosis, this article the ethical and legal implications of deception in recruitment and the sufficiency of current guidance on the practice when the study involves a stigmatizing condition, the collection of genetic samples, or both. I conclude that when these two elements are present, deception should only be used when absolutely necessary and, if used, researchers should be required to debrief participants before the collection of genetic samples and give particular attention to minimizing risks of privacy breaches.     

Applying Psychology to Help Save the World: Reflections on a Career in Psychology

This reflective personal account traces phases of the author's career where he saw psychology as relevant to major world problems. Chronologically, these problems included issues of international conflict, waste of energy and natural resources, human behaviors that caused environmental destruction, and the paramount threat of global climate change. Psychologists can make valuable contributions to describing, evaluating, and resolving these problems, and their vital importance should motivate the research and teaching of many psychologists. Our generation's success in achieving sustainable patterns of living on the Earth will determine whether the Earth will retain a livable environment for future generations. Brief suggestions are offered for approaches that may lead to more effective research and advocacy on crucial social issues.     

Methodological considerations in the study of toxic waste hazards

According to Deehon Ferris, a member of the EPA's Environmental Justice Advisory Panel, “The failure to recognize the inextricable link between the legacy of poverty and racism leads to [the] development of mono-dimensional solutions” (BNA National Environment Daily, May 5, 1995). Ferris's statement is indicative of how the dialogue in environmental justice is one of framing issues in the context of an existing debate: race versus class. Building on an earlier empirical study, this article reframes the “race versus class” debate in the context of methodological considerations. By including two different indicators of toxic hazards, I demonstrate that some research designs may not properly assess environmental injustice (in this case environmental racism). I conclude that the “race versus class” debate must be elaborated in light of the appropriateness of different toxic indicators.     

A Systematic Approach to Instruction in Research Ethics

This article describes a systematic approach for developing instructional programs that emphasizes defining learning needs, planning the learning environment, and evaluating learning to ensure continuous course improvement. This review outlines the nature of these interrelated components of instructional development and draws attention to issues specific to instruction in research ethics. Guiding questions summarize key, practical considerations, and the discussion suggests future steps in the pursuit of effective instruction in research ethics. Overall, the variety of approaches to instruction and mixed findings regarding its effectiveness underscore the need to apply a systematic framework to instruction in research ethics.     

Letters to the editor

This article proposes that an assessment of commercial feasibility should be integrated as a prerequisite for human clinical testing to improve the quality and relevance of materials being investigated, as an ethical aspect for human subject protection, and as a means of improving accountability where clinical development is funded on promises of successful translational research. A commercial feasibility analysis is not currently required to justify human clinical testing, but is assumed to have been conducted by industry participants, and use of public funds for clinical trials should be defensible in the same manner. Plant-made vaccines (PMVs) are offered in this discussion as a model for evaluating the relevance of commercial feasibility before human clinical testing. PMVs have been proposed as a potential solution for global health, based on a vision of immunizing the world against many infectious diseases. Such a vision depends on translating current knowledge in plant science and immunology into a potent vaccine that can be readily manufactured and distributed to those in need. But new biologics such as PMVs may fail to be manufactured due to financial or logistical reasons—particularly for orphan diseases without sufficient revenue incentive for industry investment—regardless of the effectiveness which might be demonstrated in human clinical testing. Moreover, all potential instruments of global health depend on translational agents well beyond the lab in order to reach those in need. A model comprising five criteria for commercial feasibility is suggested for inclusion by regulators and ethics review boards as part of the review process prior to approval of human clinical testing. Use of this model may help to facilitate safe and appropriate translational research and bring more immediate benefits to those in need.     

A Genetic Analysis of Differential Experiences of Adolescent Siblings Across Three Years

Environmental factors work to make siblings in the same family different from one another rather than similar. The Sibling Inventory of Differential Experience (SIDE; Daniels & Plomin, 1985) was constructed to evaluate how differently siblings perceive their experiences to be across three domains: parental treatment, sibling treatment, and peer characteristics. The goals of the study were threefold: to assess the degree to which siblings agree about their differential experiences; to examine the stability of perceived differential treatment across three years; and to assess genetic and environmental contributions to the SIDE using both the twin design and the stepfamily design. These goals were explored using a genetically sensitive sample of 719 same-sex sibling pairs ranging from 10 to 18 years of age of whom 94% of eligible pairs were retested three years later. Results indicated moderate agreement between siblings, and considerable stability across 3 years. As in previous research on the SIDE, MZ vs. DZ results indicated greater genetic influence than did results for full siblings vs. genetically unrelated siblings. The results suggest that, although intended as a measure of nonshared environment, the SIDE is not impervious to genetic influence as assessed by the twin design.     

约制与建构：环境议题的呈现机制 基于A市市民反建L垃圾焚烧厂的省思

本文在回顾和梳理环境事实论与环境建构论的基础上,剖析了环境议题呈现的社会机制,并以A市市民反对L垃圾焚烧发电厂建设的过程为例诠释这一机制。研究发现,环境议题的呈现机制包括了群体利益冲突、差异性认知和主张竞争、权力和资源及策略运作三个环节。环境议题不仅是客观环境现象的持续再现,更内卷了人们对环境问题的关注、认知和判断;它的提出、表达和形成正逐步由“政府主导型”和“精英主导型”向“环境利益相关者共构型”过渡;环境议题呈现了不确定性和模式化趋势的特征,这既暗示了风险社会的到来,也见证了公众对环境公正和政治平等日渐强烈的呼声,以及市民社会成长与结构性限制之间的张力。     

Using Geographic Information Systems to Create and Analyze Statistical Surfaces of Population and Risk for Environmental Justice Analysis

Objective. Methodological issues associated with the conventional statistical approach to environmental justice research, such as scale of analysis, continue to make assessments of environmental injustice problematic. Geographic information systems (GIS) can be used to facilitate multiscale analysis through the generation of statistical surface representations of both socioeconomic character and environmental risk. Methods. As a case study, U.S. Bureau of the Census and U.S. Environmental Protection Agency data sets were used to generate statistical surfaces of socioeconomic character and environmental risk for the southeast Pennsylvania region. Results. Analysis of these statistical surfaces reveals that socioeconomic status decreases with proximity to, and density of, hazardous facilities. Conclusions. Further research calls for incorporating other relevant information, such as amount and toxicity of toxic release, into GIS-based statistical surface representations of risk.     

Social Vulnerability to Toxic Risk

SUMMARY

A model of social vulnerability to toxic risk from fugitive chemical releases is tested in 8 southeastern U.S. states. Using structural equation modeling techniques, population density emerged as the critical factor driving exposure to toxic risk. Results indicate that: social vulnerability varies across types and sources of toxic risk; social factors, such as race, that increase risk in some circumstances may buffer risk in others; and that toxic risk has both social justice and social welfare components. Practice and research implications include the importance of community planning and economic models that enhance environmental quality and health along with economic security.     

The Expanding Purview: Institutional Review Boards and the Review of Human Subjects Research

The implications of the institutional review board (IRB) system's growing purview are examined. Among the issues discussed are whether IRBs are censoring research and whether the IRB review process fundamentally alters the research that is being conducted. The intersection between IRB review and free speech is also explored. In general, it is argued that the review system for human subjects research (HSR) should be modified in order to limit the scope of IRB review.     

Environmental Vulnerability in Public Perceptions and Attitudes: The Case of Israel's Urban Centers

Objective. This article investigates how urban environmental vulnerability to hazards reflects in the perceptions and attitudes of the public in three major cities in Israel: Jerusalem, Tel Aviv, and Haifa. Our central argument is that the differences between the residents' perceptions and attitudes toward environmental issues are related mostly to the actual hazard levels of their communities, whereas individual differences in socioeconomic characteristics are of lesser importance in this regard. Methods. The research was based on survey data of representative samples of the adult residents in the three cities. The differences in attitudes and perceptions among the three samples were statistically assessed by means of analysis of variance. Results. We found relatively strong and consistent relationships between actual environmental vulnerability to hazards in the three cities and their residents' attitudes toward environmental issues. The relationships with socioeconomic characteristics, such as education and income, were considerably weaker and less consistent. Conclusions. The results of this research indicate that environmental concern is not exclusive to groups and individuals characterized by postmaterialist values. Rather, the urban public in general is responsive to the environmental vulnerability of its community. This conclusion supports the argument that attitudes toward the environment are mainly affected by instrumental considerations of objective environmental problems rather than by subjective values.     

Intentional exposure studies of environmental agents on human subjects: assessing benefits and risks

In this article, I assess the benefits and risks of studies that intentionally expose research subjects to environmental agents. I describe these types of studies, identify their benefits and risks, compare them to other research methods that can be used to investigate the relationship between environmental exposures and disease, and discuss some issues related to research design and risk minimization. I argue that the benefits of intentional environmental exposure studies outweigh the risks when 1) the knowledge gained is likely to improve our understanding of the relationship between environmental exposure and disease, 2) this knowledge cannot be obtained by other methods, 3) the experiments are well designed, 4) the subjects will receive some benefits, such as medical evaluations, 5) risks are minimized, and 6) the risks to human subjects are less than those encountered in a typical Phase I drug study. Only in rare circumstances (i.e., when an intentional environmental exposure study is needed to implement an important environmental or public health intervention or regulation) may such studies expose research subjects to risks as high as those encountered in a typical Phase I drug trail.     

Assessing the educational literature in the responsible conduct of research for core content

To determine core content for RCR instruction, content analysis was conducted using key instructional resources for ORI's nine RCR "core instructional areas". Topics discussed in these key RCR resources were identified and their frequency across resources was tabulated. Topics covered most frequently were judged to be core content. Although key educational resources cited a variety of references, specific topics and issues addressed were generally consistent across the materials examined. Nonetheless, key resources varied in organization and depth of coverage for core instructional areas. Recent resources were more systematic and comprehensive than earlier works. This was particularly evident in materials about human participant research, conflicts of interest, and data management and sharing. Key resources presented additional "non-core" issues, such as scientific values, ethical principles, creativity and objectivity, moral reasoning, genetics, epidemiological issues, and scientists' societal roles, suggesting that ORI's core instructional areas should be reconfigured or expanded. Because educational material available on RCR and professionalism was so comprehensive, we recommend that ORI consider research integrity, not research misconduct, as one core instructional area. We also recommend that compliance with research regulations be restored as a core instructional area to accentuate ethical, financial and legal requirements related to acceptance of federal funding.