Joan E. Sieber

Planning ethically responsible research

Chapter 1. Introduction: Research Governance and Research Ethics Chapter 2. Why We Need Ethics: Assessing Vulnerability, Risk and Benefit Chapter 3. The Relevance of Ethical Theory to IRB Chapter 4. A Retrospective IRB Review: Rehabilitating Milgram, Zimbardo and Humphreys Chapter 5. Journalist Ethics Does Not Equal Social Scientists Ethics Chapter 6. Community-Engaged Research and Ethnography: Extreme Misfits with the Medical Model Chapter 7. Communicating Informed Consent and Process Consent Chapter 8. Degrees of non-Disclosure Chapter 9. Strategies for Assuring Confidentiality Chapter 10. The Ethics for the Invisible, Powerless and Vulnerable Research Assistant Chapter 11. Why IRBs Have an Important Place: The Autoethnographic Experiment Chapter 12. Evidence-Based Ethical Problem Solving: A Research Agenda Chapter 13. Making Ethics Review a Learning Institution: Ten Simple Suggestions

Protecting Research Subjects, Employees and Researchers: Implications for Software Engineering

Human subjects research entails risks for subjects and, to a lesser extent, for researchers. This paper introduces the common types of risks to subjects of empirical software engineering research, and how risk can be a function of the context in which the research is conducted. Risks for researchers are also discussed. Government regulation of the ethics of human subjects research is introduced using the example of the Common Rule that governs much human subjects research taking place in the United States.

Empirical Research on Research Ethics

Ethics is normative; ethics indicates, in broad terms, what researchers should do. For example, researchers should respect human participants. Empirical study tells us what actually happens. Empirical research is often needed to fine-tune the best ways to achieve normative objectives, for example, to discover how best to achieve the dual aims of gaining important knowledge and respecting participants. Ethical decision making by scientists and institutional review boards should not be based on hunches and anecdotes (e.g., about such matters as what information potential research participants would want to know and what they understand, or what they consider to be acceptable risks). These questions should be answered through empirical research. Some of the preceding articles in this special issue illustrate uses of empirical research on research ethics. This article places empirical research on research ethics into broader perspective and challenges investigators to use the tools of their disciplines to proactively solve ethical problems for which there currently exist no empirically proven solutions.

(Not) giving credit where credit is due: Citation of data sets

Adequate Citation of data sets is crucial to the encouragement of data sharing, to the integrity and cost-effectiveness of science and to easy access to the work of others. The citation behavior of social scientists who have published based on shared data was examined and found to be inconsistent with important ideals of science. Insights gained from the social sciences, where data sharing is somewhat customary, suggest policies and incentives that would foster adequate citation by secondary users, and greater openness and sharing in other disciplines.

Ethical considerations in planning and conducting research on human subjects

The ethical conduct of research on humans requires more than a caring researcher and a legalistic adherence to federal regulations. It requires good planning and managing of issues accruing from the research relationship–communication, risk and perception of risk, and benefits–to all who have a stake in the relationship and outcome. In 1978 the National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research identified ethical principles that should govern research on humans. Institutional review boards (IRBs) now exist in every organization that receives federal funding for human-subjects research. Researchers have an obligation to study the requirements of their IRB when they plan their research. Further, they must establish appropriate procedures for obtaining informed consent and assessing risk, risk perception, and ways to increase the benefits of research.

Will the new code help researchers to be more ethical

A code of ethics has 2 largely incompatible objectives: to set forth enforceable minimal standards of conduct and to teach about or invoke ethical conduct. The section of the new American Psychological Association code dealing with research ethics achieves the former to some degree. However, it neither provides needed education in the ethics of research nor states where the reader might turn for such information. The code is particularly deficient in the following areas: privacy and confidentiality; institutional review boards; deception; debriefing; data sharing; and research on marginal populations, on children and adolescents, and in organizational contexts. Suggestions are offered for providing a bibliographic resource, in hard copy and on-line, that would stimulate independent interest, scholarship, education, and research on research ethics.

Using Our Best Judgment in Conducting Human Research

The federal regulations of human research were written to permit the use of discretion so that research can fit the circumstances under which it is conducted. For example, the researcher and institutional review board (IRB) could waive or alter some informed consent elements if they deem this the morally and scientifically best way to conduct the research. To do so, however, researchers and IRBs would first have to use mature moral and scientific judgment. They might also have to rely on empirical research to discover the most effective way to act on their moral sense (e.g., to discover how best to approach potential research participants and explain the nature and purpose of the research participation for which they are being recruited, to ensure comprehension and competent decision making). On discovering the most ethical way to proceed, they would then need to look to the federal regulations of human research to discover how to document their decision and justify it within that somewhat flexible regulatory structure. Unfortunately, many IRBs and researchers fail to take these sensible steps to solve ethical problems and proceed immediately to a default requirement of the regulations that places science at odds with the regulations and, ostensibly, with ethics. The following articles in this special issue are about the process of learning to engage in ethical problem solving and using the flexibility permitted by the federal regulations. These articles extricate researchers from the mindset that has gotten them into trouble, and, ideally, provoke them to use mature common sense and moral judgment.

Sharing scientific data I: new problems for IRBs.

IRBs, in their concern to ensure confidentiality, may tend to unduly restrict data sharing. Yet, there must be reasonable accommodation for the secondary use of data by other scientists. A major goal of this series of articles is to provide IRBs with an understanding of both barriers to sharing and ways to provide usable data to secondary users, without undue restrictions, while protecting human subjects. This article sets forth data sharing issues of concern to IRBs. Further articles will provide background for resolving such issues.

Ethical Dilemmas in Social Research

What kinds of ethical dilemmas arise in social research? This chapter describes the set of dilemmas that confronts investigators, and indicates how and why dilemmas arise and why social scientists are largely unprepared to solve them. The major ethical and scientific values that are available to guide social scientists are examined along with some of the characteristics of effective problem solving that underlie the work presented in subsequent chapters. Emphasis is placed on the creative use of alternative social science methods and value systems.

Readability and Understanding of Informed Consent Among Participants With Low Incomes: A Preliminary Report.

With passage and implementation of the Affordable Health Care Act, more vulnerable segments of the U.S. population will now have access to regular health care and increased opportunities to participate in biomedical research. Yet, access to new groups brings with it new responsibilities for investigators, most importantly, reducing burdens for participants. Data collected through this small pilot study suggest several preliminary but potentially important findings when working with adults from low-income populations: First, while all participants read some parts of the consent forms (55%), only a minority reported reading the entire form (45%); second, 73% of participants reported understanding the study very well whereas only 27% reported understanding the study “a little”; third, there was a slight reported advantage of the simplified form over the regular form; however, this difference varied by section. Relatedly, other research has shown a high incidence of persons reading none of the consent form, but signing a statement that they have read and understood the study. Why does this occur? What are we teaching people when we request that they sign a consent form they have chosen not to read? What are the ethical and regulatory implications? Embedded ethics studies such as this one, although pilot and preliminary in nature, offer a number of advantages, such as stimulating additional scientific inquiry as well as challenging established institutional practices.