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Research involving prisoners repeatedly went astray during the last century, culminating in the cruel medical experiments inside the Nazi concentration camps that gave rise to the Nuremberg Code. However, prisoners continued to become victims of scientific exploitation by the rapidly evolving biomedical research industry. The common roots of these abuses were the flawed philosophy that the needs of the society outweigh the needs of the individual and the researchers’ view that prisoners are cheap, easy to motivate and stable research subjects. Prisoners are vulnerable to exploitation and abuse by research because their freedom for consent can easily be undermined, and because of learning disabilities, illiteracy and language barriers prevailing within prisoner populations. Therefore, penal laws of some countries supported by a number of internationally agreed documents prohibit research involving prisoners completely. However, prisoners must also be regarded as vulnerable to the specific health problems in prisons, e.g. transmissible diseases, mental disorders and suicide ‐ problems that need to be addressed by research involving prisoners. Additionally, the participation of prisoner patients in research they directly can benefit from should be provided. Hence, it must be a common objective to find the right balance between protection from exploitation and access to research beneficial to prisoners.

The purpose of an oversight structure or institution is to protect human subjects from research that would pose unacceptable dangers or deny human rights. Review boards provide an independent assessment of research proposals. This additional level of scrutiny is meant to provide an additional level of protection for human subjects. However, oversight of human subject research, as currently carried out in the bureaucratic, rule‐based, clinically‐biased American system, is too cumbersome with regard to online research. In addition, it is not conducive to the training of ethical Internet researchers. Internet research differs from traditional human subject research in many ways, and the oversight rules governing traditional research do not easily relate to the complexities of conducting research online. Online researchers do not oppose the foundational principles of non‐maleficence (avoiding harm) and autonomy, nor do they reject the ideals of informed consent and confidentiality, nevertheless, they face practical dilemmas in attempting to follow these principles and apply these ideals in the various Internet domains. The current oversight system is ill‐equipped to assist. A conservative response to this problem of fit might entail adjustments to the oversight system that, in the case of the American system, would entail modifications to the Common Rule and Institutional Review Boards (IRBs). I will argue in this paper, instead, that re‐structuring is needed to allow more oversight authority for Internet researchers. I will utilize Consequentialism and Virtue Ethics in making this case.

Academic scholars have leveraged crowd work platforms such as Amazon Mechanical Turk for human subjects research for almost two decades. However, few scholars have reflected or questioned this mode of academic research. This paper aims to examine three fundamental problems of crowd work and elaborates on their lasting effects on impacting the validity and quality of human subjects research on crowd work.

A critical analysis is conducted on the characteristics of crowd work, and three fundamental problems of crowd work since its origin were identified, namely, the position of “Human-as-a-service,” the confusion of terminology and crowd work platforms’ abdication of responsibilities.

This paper explains that the three identified fundamental problems of crowd work render at least two lasting problems in crowd work-based research: first, the negligence of the teleological difference between crowd work and academic research; second, the ontological schism between scholars and institutional review boards (IRBs) in their ethical concerns and practices.

This paper critiques the foundation of crowd work-based research that has become growingly popular, extolled and taken for granted. Such a critique is deficient in literature and may seem a bit peculiar. However, we hold that it is time to take research ethics seriously in crowd work because we need to introspect and question ourselves as scholars: What is our motive or ethical stance in using crowd work for human subjects research? Is it for advancing scientific knowledge, promoting crowd workers’ welfare, or predominantly for benefiting ourselves from the fast, cheap and “good” data via crowd work?

I want to read the controversies and scandals surrounding Institutional Review Boards (IRBs) within a critical pedagogical, discourse. Ethics are pedagogies of practice. IRBs are institutional apparatuses that regulate a particular form of ethical conduct, a form that may be no longer workable in a transdisciplinary, global, and postcolonial world. I seek a progressive performative cultural politics that enacts a performance ethics based on feminist, communitarian assumptions. I will attempt to align these assumptions with the call by First and Fourth World scholars for an indigenous research ethic (Smith, 1999; Bishop, 1998; Rains, Archibald, & Deyhle, 2000). This allows me to criticize the dominant biomedical and ethical model that operates in many North American universities today. I conclude with a preliminary outline of an indigenous, feminist, communitarian research ethic. This ethic has two implications. It would replace the current utilitarian ethical model that IRBs utilize. It argues for a two-track, or three-track IRB model within the contemporary university setting.

When a study involves human participants, researchers need to ensure their safety and protect their identities. How do potential participants know what they are agreeing to contribute, and how and why the research is being conducted? Informed consent describes the process and agreements that answer such questions. Conventional consent protocols focused on preresearch discussions between the researcher and the potential participant, resulting in a signed document that verified the agreement. In research conducted with, on, or through social media, there are fewer opportunities for conversational explanations of formal documents. Simply posting legalistic documents is ineffective because Internet users typically do not read such materials before verifying agreement. Researchers need to understand communities, contexts, and communication styles of target participants and settings in order to provide information in familiar, user-friendly ways. Based on a review of literature about informed consent, and a study of current practices used by companies that need to verify agreements online, practical research suggestions are offered. Qualitative researchers who want to collect data through active interactions with human participants will find these examples and recommendations of use when designing their studies.

As computers, the Internet, online digital resources, and eventually the National Information Infrastructure become increasingly important in our lives, the study of the use of these technologies has become one of the fastest growing areas in social science. This research is important, but, like any kind of social science involving the study of human subjects, it raises questions of ethics and human dignity. Most major research universities have guidelines for this kind of scholarship, based on the Nuremberg Code and/or the Belmont Principles. But research in cyberspace was clearly not on the minds of those drafting these guidelines. Some of the difficulties produced by this tension between traditional guidelines and new technologies are discussed.

Reusing existing data sets of health information for public health or medical research has much to recommend it. Much data repurposing in medical or public health research or practice involves information that has been stripped of individual identifiers but some does not. In some cases, there may have been consent to the reuse but in other cases consent may be absent and people may be entirely unaware of how the data about them are being used. Data sets are also being combined and may contain information with very different sources, consent histories, and individual identifiers. Much of the ethical and policy discussion about the permissibility of data reuse has centered on two questions: for identifiable data, the scope of the original consent and whether the reuse is permissible in light of that scope, and for de-identified data, whether there are unacceptable risks that the data will be reidentified in a manner that is harmful to any data subjects. Prioritizing these questions rests on a picture of the ethics of data use as primarily about respecting the choices of the data subject. We contend that this picture is mistaken; data repurposing, especially when data sets are combined, raises novel questions about the impacts of research on groups and their implications for individuals regarded as falling within these groups. These impacts suggest that the controversies about de-identification or reconsent for reuse are to some extent beside the point. Serious ethical questions are also raised by the inferences that may be drawn about individuals from the research and resulting risks of stigmatization. These risks may arise even when individuals were not part of the original data set being repurposed. Data reuse, repurposing, and recombination may have damaging effects on others not included within the original data sets. These issues of justice for individuals who might be regarded as indirect subjects of research are not even raised by approaches that consider only the implications for or agreement of the original data subject. This chapter argues that health information should be available for reuse, information should be available for use, but in a way that does not yield unexpected surprises, produce direct harm to individuals, or violate warranted trust.

Argues that Humphrey’s tearoom trade study, misinforms readers as much as it informs, regarding moral and ethical foundations for research with human subjects. States that Humphrey’s tearoom study made significant positive contributions to the population he studied. Concludes that few studies in sociology have accomplished as much in a single work.

While some of us enjoy engaging in many forms of bioethical activity, including philosophical analysis and debate, clinical ethics consultation, and empirical research, only the latter matters much to the practicing physician. Practically minded, most doctors have little concern with fine moral distinctions when faced with a patient's request for assistance in dying or a pharmaceutical company's offer to attend a product “consultation” session at a first class resort in addition to an attractive fee for participation. Physicians want to know what facts might bear on ethical questions they confront, how ethical conflicts that have an impact on patient care can be understood and resolved, and whether research reveals consistently clear, helpful findings. The following discussion offers some examples of how empirical research related to bioethical issues has provided evidence and guides for physicians at both individual-patient care and policy levels, and further reviews areas that warrant continued research attention.