Ethics of research design

Discussions of ethical issues in research involving human subjects most usually provoke concerns about valid informed consent procedures. However, considering the recognized limitations of informed consent, arguably the way a study is designed is a more consequential concern for subject well‐being. This paper summarizes ethical issues in the design of clinical research, with reference to historic and current guidelines. Special attention is given to randomized clinical trials (RCTs) and psychiatric research.     

From Baltimore to Bell Labs: Reflections on Two Decades of Debate about Scientific Misconduct

This essay proposes a new definition of scientific "misconduct," which is broader than the definition recently adopted by the U.S. government. According to the proposed definition, misconduct is a serious and intentional violation of accepted scientific practices, commonsense ethical norms, or research regulations in proposing, designing, conducting, reviewing, or reporting research. Punishable misconduct includes fabrication of data or experiments, falsification of data, plagiarism, or interference with a misconduct investigation. Misconduct does not include honest errors, differences of opinion, or ethically questionable research practices.     

The frequency of Mislabelled chemicals from commercial suppliers

This essay provides an analysis of conflicts of interest (COIs) that arise in university relationships with private industry and articulates the concept of an "institutional" COI. It compares personal and institutional COIs in order to shed some light on the difficulties universities face in managing their own COIs. The essay discusses some proposed strategies for responding to institutional COIs, such as developing independent boards to monitor and oversee the university's COIs, building firewalls between various parts of the university to prevent financial interests from affecting university functions, creating independent research institutes, and prohibiting some types of university investments.     

See It,Sense It,Save It: Economies of Multisensuality in Contemporary Zoos

ABSTRACT

Contemporary zoos publicize their role as centers for the conservation of endangered species and include so-called “naturalistic displays.” These and other aspects of the new zoos can be fruitfully analyzed from the perspective of what some analysts describe as the predominance of “visual culture” in modern societies. The following essay nonetheless makes the case for an interpretation of zoos that highlights their multisensual character. On the basis of the semeiotic theory of Charles Sanders Peirce and the results of visitor research at two British zoos, the essay develops an account that articulates four different modalities of observation and their corresponding economies of multisensuality.     

The Misuse of Statistics: Concepts,Tools, and a Research Agenda

This paper presents concerns regarding misuse of statistics in scientific work, especially in biomedical research. The paper discusses what is meant by "misuse." It appears that misuse arises from various sources: degrees of competence in statistical theory and methods, honest error in the application of methods, egregious negligence, and deliberate deception (misconduct.) The incidence of error is partly due to a perceived need to meet artificial statistical criteria for acceptance of research reports for publication by journals. There has been no systematic research into the prevalence of misuse or its breakdown by type. Nonetheless, there are ways to encourage, or even to enforce, good statistical practice. These can be greatly supported by use of available statistical ethics documents. This article suggests lines of further research that could define the problem more explicitly and that might lead to additional corrective measures.     

Resolving Beecher's Paradox: Getting beyond IRB reform

Protection of persons participating as research subjects is an essential element of ethical research conduct. There is growing concern that the existing system of institutional review boards (IRBs) and informed consent may not be adequate and is in need of reform. When science and medicine are “merged”; in clinical research, confusion of roles and conflicts of interests arise in relationships between patient‐subjects and physician‐investigators. IRBs have always had a primary role in protection of research participants. Their efforts to protect research subjects may make it more difficult for investigators to conduct research. This tension has lead to the development of an adversarial relationship between IRBs and investigators. Investigators and IRBs are also subject to external pressures that could impact efforts to protect research subjects. Efforts are underway to address these concerns. IRB reform, while needed, is not likely to be sufficient. Adoption of a new paradigm in which IRBs, investigators and research sponsors collectively accept protection of research subjects as their primary and shared responsibility may provide a more effective and efficient model that will be better able to deal with difficult ethical and social issues in clinical research.     

International research: Ethical imperialism or ethical pluralism? 1

Conflicts have arisen in international research when countries in which research is being carried out lack the ethical rules or mechanisms for review employed in the United States and Europe. It is objected that a requirement to adhere to regulations promulgated by the US government constitutes “ethical imperialism.”; But if researchers in some countries need not be bound by ethical standards widely accepted in the conduct of research, it could open the door to an ethical relativism allowing virtually any standard a country desires to accept. One example is the variations in informed consent, especially in countries that accord lesser importance to the individual than do the US and Europe. A recent controversy centered on a series of placebo‐controlled, HIV/AIDS trials sponsored by the United States and conducted in several developing countries. These trials could not ethically be carried out in the United States because a proven effective treatment exists. Attempts to avoid similar controversies in forthcoming HIV/AIDS vaccine trials have been initiated by the joint United Nations AIDS program, with a process of regional consultations in the countries where the research will be conducted.     

Ethical Beliefs of Social Work Researchers

Abstract

The purpose of this study is to examine the beliefs of social work researchers about ethical practices. Surveys were mailed to a random sample of 240 members of the Society for Social Work and Research (SSWR) to elicit their views about ethical practices in social work research. Responses from 160 members (67% response rate) yielded information regarding the appropriateness of dual relationships, authorship practices, informed consent procedures, and other conduct in social work research. Age, gender, educational level, years of social work research experience, and current teaching of social work research were related to respondents' ethical views about practices with students and sexual relationships with research subjects. The need for additional resources on ethics in social work research is highlighted.     

The Role of Litigation in Human Research Accountability

This essay examines and analyzes the recent and dramatic series of personal injury lawsuits instituted against those individuals and institutions that conduct and monitor human research. It discusses the social engineering functions of tort litigation, outlines the legal elements and viability of lawsuits against those who conduct and monitor human research, and evaluates and predicts what role tort litigation will play in fulfilling the goals of accountability in the context of human research and human research regulation. In general, tort law engenders two forms of accountability: retrospective and prospective. Retrospective accountability is backward looking, focusing on harms that have already occurred, their culprits, and the reimbursement of individuals for their injuries. Prospective accountability is forward looking in that it encourages actors and institutions to fulfill responsibilities toward individuals in order that harm does not occur, or at least that the risk of harm is decreased. This article argues that research litigation is not, and will probably never become, an effective means of ensuring retrospective accountability in regard to research injuries and ethical violations. Paradoxically though, the current wave of research litigation may serve an important and even key role in encouraging and ensuring prospective accountability.     

Physician duties in the conduct of human subject research

In this article, I examine a skeptical argument against the possibility of ethically justifying risky human subject research (rHSR). That argument asserts that such research is unethical because it holds the possibility of wronging subjects who are harmed and whose consent to participate was less than fully voluntary. I conclude that the skeptical argument is not in the end sufficient to undermine the ethical foundation of rHSR because it fails to take account of the special positive duty researchers owe their clients and future patients. Although the skeptical argument is defeated, it exacts certain novel concessions from the pro‐research position. Of particular importance are the admissions (a) that researchers presumptively owe a fiduciary duty to research subjects, (b) that because the most important risks of rHSR are unknown and unquantifiable that duty must be explicitly waived by all subjects before they participate in any protocol, and (c) that such waivers must be made by individuals who satisfy objective criteria of competence for giving fully voluntary consent. The implementation of procedures responsive to these concerns might have a dampening effect on the conduct of research. However, the article concludes with a consideration of the likely benefits to researchers and society of a more cautious ethical regime.     

Interpretive Psychology: Stories, Circles, and Understanding Lived Experience

This essay provide an overview of the "interpretive" or "hermeneutic" approach to psychological research. It draws primarily on the work of Wilhelm Dilthey (1833–1911), a philosopher and literary historian who is generally recognized as the "father" of the modern hermeneutic enterprise in the social and human sciences. Dilthey argued that the human world was sufficiently different from the natural world that special methods were required for its study. Hermeneutics, the deliberate and systematic methodology of interpretation, was the approach Dilthey proposed for studying and understanding the human world. This essay summarizes Dilthey's vision of hermeneutics and considers his conception of the so-called hermeneutic circle, which characterizes the complex dynamics involved in the process of interpretation. It then illustrates Dilthey's approach by interpreting a brief interview narrative using a method based on his work. It concludes with an exploration of some of the ethical implications of adopting a hermeneutic approach to psychological research.     

Planning for future research participation: Ethical and practical considerations

This paper addresses the concept of advance planning for future research participation during episodic or permanent decisional incapacity. First, the concept and its historical origins are described. Second, the concept's ethical justifications are presented. Third, commentary raising ethical and practical concerns about advance research planning is discussed. The paper concludes with the author's views on advance research planning and on the relevant recommendations of the National Bioethics Advisory Commission.     

Ethical guidelines for research with children: A review of current research ethics documentation in New Zealand

Abstract

Children's rights to participate in matters affecting them, including research, have gained increasing recognition over recent decades. This recognition, and the growth in research with children as participants, has given rise to greater attention from researchers to ethical issues related to child research. This article reviews the current ethics documentation in New Zealand. The findings indicate that considerable variation exists between ethical codes and guidelines in relation to research with children. The dominant focus is on attending to issues of consent and protection from harm, at the outset of the research, rather than recognition of the ongoing nature of ethical issues throughout the research process. Although the findings indicate an increase in the consideration of ethical issues, the existing documentation is inconsistent and inadequate in attending to specific child‐related issues. Suggestions are made to enhance children's participation in research and demonstrate a respect for their participation rights.     

Waivers of parental consent for sexual minority youth

ABSTRACT

The Society for Adolescent Health and Medicine emphasizes the need for research to focus on the health outcomes of sexual minority youth (i.e., lesbian, gay, bisexual, transgender, queer). However, sexual minority youth (SMY) are often less willing to participate in research studies where parental consent is required due to potential victimization and discrimination. This is a major concern given that more research is needed to understand the health needs of this population, especially in terms of suicide, substance use, and HIV prevention. The National Suicide Prevention Strategy classifies SMY as a high-risk group, emphasizing the need to explore suicide risks (along with other health outcomes) among this group. However, this high-risk classification also increases the safeguards necessary to conduct research with this population. Many researchers have argued for waivers of parental consent, but such waivers present with several ethical implications. This article discusses ethical principles, risks, benefits, safeguards, and potential alternative approaches to waivers of parental consent for SMY. We conclude by emphasizing the need for policy changes to allow parental consent waivers for research targeting SMY.     

An Ethical Dilemma in Elder Abuse

Abstract

While most elder abuse is perpetrated by family members, some may be performed by strangers. When the elderly victim reaches out to the social agency but then refuses services, an ethical dilemma is created for the social worker. Conflicts arise among social work values and the ethical principles of autonomy and paternalism, beneficence, and nonmaleficence. A model of ethical justification is applied that explains the possible decisions in this case. The actual resolution of the dilemma is accomplished through a social work practice principle.     

Development of Two Measures of Climate for Scientific Organizations

The aim of this article is to describe the development of two measures of ethical climate for scientific organizations. The first measure utilizes a traditional climate measurement approach and was developed in order to understand the various ethical and creative aspects of organizational climate, or academic departmental climate in university settings, in organizations where scientific and academic research is conducted. The second measure utilizes a biodata measurement approach, a set of career event scales applicable in university and research settings. Such a measure is intended to identify those experiences unique to scientific work that may influence research climate at the individual, group, and organizational levels. Specifically, these measures will be used to predict integrity in the early part of a scientist's career based on various situational influences that occur in scientific organizations.     

II. Patients of the department of psychological medicine,guy's hospital,london 1

Abstract

Harvey Dean (1998) rejects my (Wakefield, 1988a; 1988b) argument that minimal distributive justice is the essential mission of social work and that treatment of mental disorder is not part of the profession's essential mission but rather a derived task. He argues that social work has broader ethical aims that encompass both pursuit of justice and treatment of mental disorder. In this article, 1 review my earlier position and respond to Dean's objections. I argue that Dean's narrativist account of the profession's ethical aims is overly broad and that he confuses non‐disordered psychological problems with mental disorders. I conclude that neither my “minimal distributive justice” view of social work's mission nor my exclusion of treatment of mental disorder from the profession's essential mission are disconfirmed by Dean's arguments.     

From Emplaced Knowing to Interdisciplinary Knowledge

ABSTRACT

In this article, we discuss how experiential and unspoken ways of knowing produced through a video-based approach to sensory ethnography can be made meaningful and relevant to the applied practice of design and engineering scholars. We advance discussions of sensory ethnography by interrogating and making explicit the analytical processes that turn the sensory knowing of the ethnographic encounter into convincing accounts of everyday realities whilst engaging new sensitivities and ways of seeing that in themselves contribute to cross-disciplinary knowledge. We argue that through a more self-conscious appreciation of how and where experiential categories become applied knowledge the value of a sensory ethnography approach in design-centered energy research can be realized.     

Enriching our understanding of vulnerability through the experiences and perspectives of individuals living with mental illness

ABSTRACT

Vulnerability is a central concept in research ethics and typically serves to identify individuals or groups whose participation in research prompts specific concerns or warrants special consideration. While theoretical discussions on vulnerability have contributed valuable insights to discussions of mental health research and care, they have not been enriched thus far by stakeholder perspectives. This oversight has important consequences for the ways in which we frame vulnerability. It misses the far-reaching insights and experiential knowledge of mental health research participants whose experiences this ethics concept ultimately seeks to capture. In view of this gap, our study combines a pragmatist ethics framework and interpretive phenomenological analysis of qualitative interviews to explore user perspectives on the notion of vulnerability through the lived experiences of mental health research participants and patient-advocates. Importantly, these perspectives offer essential clues to address the difficulties of operationalizing concerns for vulnerability in concrete and practical ways. They help refine our understanding of this key ethics concept.     

Reflections and Prospects of the Gerontological Social Work Training and Education: The AGESW Pre-Dissertation Fellows Program

ABSTRACT

The demand for professional training, mentorship, and research in the field of aging is expected to increase remarkably. Recent statistics indicate that less than 8% of social work students nationwide specialize in gerontology; however, a significant amount of social work graduates, regardless of their specialization at school, serve older adults in various health care settings. In addition, the aging populations that social work graduates serve are becoming more racially and ethnically diverse. In order to address this issue, it is critical to support students and emerging scholars to not only become more competent in gerontological social work, but also engage in culturally competent research and practices. In this commentary, I described my experiences as a former fellow of the AGESW (Association for Gerontology Education in Social Work) Pre-Dissertation Fellows Program that fosters doctoral students in the field of gerontological social work. The program helps its fellows comprehend basic principles of doctoral education, develop strong professional networks with other colleagues and mentors across the country, and respect diversity in the population we serve as well as those within our own fellow group.