Much has been written about prisoner research and the controversies surrounding prisoners as human subjects. The Institute of Medicine recently released a report addressing some of these issues. This report, which generated further controversy, needs to be fully discussed in the literature and certain aspects are examined in this work. Further, in the body of literature there has been little acknowledgement of the concept of the right of prisoners to be involved in research. This needs to (...) be pursued from an ethical perspective and eventually a legal one. This paper explores that concept and documents some facilities in which a prisoner's right to research has occurred. (shrink)

Roughly 80,000 U.S. prisoners are held in solitary confinement at any given time. A significant body of research shows that solitary confinement has severe, long-term effects, and the United Nations has condemned the practice of solitary confinement as torture. For years, prisoners have been organizing hunger strikes in order to protest solitary confinement. But such action is not without consequences, and some inmates have suffered serious injury or death. The question I raise in this paper is whether (...) we ought to force-feed hunger striking prisoners when serious harm is imminent. Both the World Medical Association and the American Medical Association have denounced the practice of force-feeding prisoners on hunger strike, and yet, the practice is common. Such prevalence is likely a result of the tension between the person-as-patient and person-as-prisoner and cannot easily be resolved. Instead, we must take seriously the complaint that solitary confinement is inhumane and avoid placing health professionals in the position where they must choose to force-feed the prisoner against his will or not. I argue that a conventional bioethics debate centering on polarizing principles of prisoner autonomy and a duty-to-protect the prisoner from harm is an inadequate framework for this complex issue. Instead, we must examine the prisoner’s intent and his right to freedom of speech. I argue that when the prisoner’s intent is to raise awareness and communicate with others, his hunger strike is a form of speech. Protest-as-speech is constitutionally protected—even for prisoners—and remains a minimum ethical obligation for society to uphold. (shrink)

While many books on ethics contain a chapter discussing prisoners’ rights and the ethical dimensions of research involving incarcerated persons, Vulnerability and Incarceration is the first monograph devoted to the subject. Victor interrogates the concept of vulnerability to examine prisoners’ right to medical research from a novel point of view.

The quality of doctoral-level chemistry (N=145), computer science (N=58), geoscience (N=91), mathematics (N=115), physics (N=123), and statistics/biostatistics (N=64) programs at United States universities was assessed, using 16 measures. These measures focused on variables related to: program size; characteristics of graduates; reputational factors (scholarly quality of faculty, effectiveness of programs in educating research scholars/scientists, improvement in program quality during the last 5 years); university library size; research support; and publication records. Chapter I discusses prior attempts to assess quality in (...) graduate education, development of the study plans, and the selection of disciplines and programs to be evaluated. Chapter II discusses the methodology used, focusing on each of the assessment measures. Chapters III to VIII present, respectively, findings from the analyses of the chemistry, computer science, geoscience, mathematics, physics, and statistics/biostatistics programs. Chapter IX includes a summary of results, correlations among measures, several additional analyses, and suggestions for future studies. Among the findings reported are those indicating that mathematics programs had, on the average, the largest number of faculty (N=33) in December 1980 followed closely by physics (N=28) and chemistry (N=23), and that 80 percent of computer science students had job commitments by graduation. (Survey instruments and supporting documentation are included in appendices.) (JN). (shrink)

The quality of doctoral-level biochemistry (N=139), botany (N=83), cellular/molecular biology (N=89), microbiology (N=134), physiology (N=101), and zoology (N=70) programs at United States universities was assessed, using 16 measures. These measures focused on variables related to: (1) program size; (2) characteristics of graduates; (3) reputational factors (scholarly quality of faculty, effectiveness of programs in educating research scholars/scientists, improvement in program quality during the last 5 years); (4) university library size; (5) research support; and (6) publication records. Chapter I discusses (...) prior attempts to assess quality in graduate education, development of the study plans, and the selection of disciplines and programs to be evaluated. Chapter II discusses the methodology used, focusing on each of the assessment measures. Chapters III to VIII present, respectively, findings from the analyses of the biochemistry, botany, cellular/molecular biology, microbiology, physiology, and zoology programs. Chapter IX includes a summary of results, correlations among measures, several additional analyses, and suggestions for future studies. Among the findings reported are those indicating that cellular/molecular biology programs had, on the average, the largest number of faculty and that students in cellular/molecular biology, biology, biochemistry, microbiology, and physiology received a relatively high fraction of financial support. (Survey instruments and supporting documentation are included in appendices.) (JN). (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing (...) in mind the Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

Our society gives certain rights and protections to those who are punished and incarcerated, deeming them a vulnerable group in need of additional protections because they are under state control. Despite these protections, prisoners are still susceptible to mistreatment and abuse. This paper delves into one area in which prisoners are particularly vulnerable—the use of prison labor to fight wildfires in the western United States. In this paper, I first broadly discuss prison labor, before going into the (...) current ethical principles and guidelines in the field of corrections that address the treatment of prisoners and prison labor. I argue that these principles and guidelines should be augmented to help those in corrections to make decisions about what is ethical; suggesting that how researchers evaluate proposed research projects could serve as a model for decision-making. I then introduce prison fire camps, considering whether they are ethical by research ethics principles, and suggesting how they can be changed to better reflect the values professed by our society. (shrink)

Addresses the issues at the heart of international medicine and social responsibility. A number of international declarations have proclaimed that health care is a fundamental human right. But if we accept this broad commitment, how should we concretely define the state’s responsibility for the health of its citizens? Although there is growing debate over this issue, there are few books for general readers that provide engaging accounts of critical incidents, practices, and ideas in the field of human rights, health (...) care, and medicine. Included in the book are case studies of such issues as AIDS among orphans in Romania, organ trafficking, prison conditions, health care rationing, medical research in the third world, and South Africa’s constitutionally guaranteed right of access to health care. It uses these topics to address themes of protection of vulnerable populations, equity and fairness in delivering competent medical care, informed consent and the free flow of information, and state responsibility for ensuring physical, mental, and social well-being. (shrink)

Conducting research in a prison setting is ethically challenging. Because history is full of unethical research conducted in prison settings, researchers are often afraid of doing research in this area. It is argued that too much emphasis has been put on the protection of prison inmates as a vulnerable population. Consequently, too little research is being conducted where the focus is on those factors which serve to make the prison population vulnerable. In this paper ethical questions, (...) emerging when conducting a study on literacy and mental health among Norwegian prison inmates, are presented and discussed. Relevant questions relate to topics which include ethical clearance of the research protocol, the consent procedure, clarification of roles and the publication of the results. The ethical questions are discussed in relation to the four principles of ‘respect for the client's rights and dignity’, ‘competence’, ‘responsibility’ and ‘integrity’ set out in the meta-code of ethics, formulated by the European Federation of Professional Psychologists Associations. The wider relationships between ethics in society, research ethics in general, and ethics when conducting research in a prison setting are also considered. (shrink)

Conducting research in a prison setting is ethically challenging. Because history is full of unethical research conducted in prison settings, researchers are often afraid of doing research in this area. It is argued that too much emphasis has been put on the protection of prison inmates as a vulnerable population. Consequently, too little research is being conducted where the focus is on those factors which serve to make the prison population vulnerable. In this paper ethical questions, (...) emerging when conducting a study on literacy and mental health among Norwegian prison inmates, are presented and discussed. Relevant questions relate to topics which include ethical clearance of the research protocol, the consent procedure, clarification of roles and the publication of the results. The ethical questions are discussed in relation to the four principles of ‘respect for the client's rights and dignity’, ‘competence’, ‘responsibility’ and ‘integrity’ set out in the meta-code of ethics, formulated by the European Federation of Professional Psychologists Associations. The wider relationships between ethics in society, research ethics in general, and ethics when conducting research in a prison setting are also considered. (shrink)

BACKGROUND: The offer of return of research results to study participants has many potential benefits. The current study examined the offer of return of research results by analyzing consent forms from 2 acute lymphoblastic leukemia studies of the 235 institutional members of the Children's Oncology Group. METHODS: Institutional review board (IRB)-approved consent forms from 2 standard-risk acute lymphoblastic leukemia studies (Children's Cancer Group [CCG] 1991 and Pediatric Oncology Group [POG] 9407) were analyzed independently by 2 reviewers. RESULTS: The (...) authors received replies from 202 of the 235 institutions that were contacted (85%). One hundred eighty-one institutions had CCG 1991 (n = 96) or POG 9905 (n = 85) protocols that were approved by an IRB. Most institutions provided contact information for the principal investigator (n = 175; 97%) and a member of the institution's research services office (n = 154; 85%). Only 5 (2.8%) institutions provided an indication of a participant's right to receive a summary of research results; most of these institutions provided details on how (n = 5) or when (n = 5) this was to occur. All of these institutions (n = 162; 89.5%) provided a specific statement offering new information that might affect a participant's decision to continue to participate in a study. Only 2 institutional consent forms offered participants the option to receive research results, and only 10 (5.5%) consent forms contained an unambiguous, specific statement offering to provide new information after the study was closed. CONCLUSIONS: Few institutional review board-approved consent forms explicitly indicate the right of research recipients to receive a summary of the results of the research in which they have participated. (shrink)

In this article, I address (1) the anti-academic procedures by which Professor Thomas Sheehan affirms that I “continue” a “scam,” before (2) presenting in a greater detail my work on the notion of being as a code name (Deckname) in Heidegger. In sections 3, 4, and 5, I analyze the way in which Sheehan authoritatively hollows out the state of the debate around the interpretation of Heidegger and the weakness of his philological interpretation. Finally, in the last section, I return (...) to the necessity of the research that Sheehan’s “Emmanuel Faye: The Introduction of Fraud Into Philosophy?” attempts to discredit. (shrink)

In this article, I address the anti-academic procedures by which Professor Thomas Sheehan affirms that I “continue” a “scam,” before presenting in a greater detail my work on the notion of being as a code name in Heidegger. In sections 3, 4, and 5, I analyze the way in which Sheehan authoritatively hollows out the state of the debate around the interpretation of Heidegger and the weakness of his philological interpretation. Finally, in the last section, I return to the necessity (...) of the research that Sheehan’s “Emmanuel Faye: The Introduction of Fraud Into Philosophy?” attempts to discredit. (shrink)

Restricting a person’s liberty presents society with many inherent ethical challenges. The historical purposes of confinement have included punishment, penitence, containment, rehabilitation, and habilitation. While the purposes are indeed complex, multifaceted, and at times ambiguous or contradictory, the fact of incarceration intrinsically creates many ethical challenges for psychiatrists working in correctional settings. Role definition of a psychiatrist may be ambiguous, with potential tensions between forensic and therapeutic demands. Privacy may be limited or absent and confidentiality may be compromised. Patient autonomy (...) may be threatened to address real or perceived security concerns. Care delivery may actually have harmful consequences in court cases for pretrial detainees or lethal consequences for those under a death sentence. An absence of data and targeted research hampers the development of evidence-based care delivery for the disenfranchised, understudied, and disproportionately ill prisoner population. In this review paper, I discuss a few of the challenges and dilemmas routinely faced and present a series of questions. Where feasible, proposed resolutions are offered. (shrink)

ABSTRACT The 2006 Institute of Medicine (IOM) report, ‘Ethical Considerations for Research Involving Prisoners’, recommended five main changes to current US Common Rule regulations on prisoner research. Their third recommendation was to shift from a category‐based to a risk‐benefit approach to research review, similar to current guidelines on pediatric research. However, prisoners are not children, so risk‐benefit constraints on prisoner research must be justified in a different way from those on pediatric research. (...) In this paper I argue that additional risk‐benefit constraints on prisoner research are unnecessary: the current Common Rule regulations, omitting category‐based restrictions but conjoined with the IOM report's other four main recommendations, ensure that prisoner research is as ethical as non‐prisoner research is. I explain why four problems which which may be more prevalent in prisons and which risk‐benefit constraints may seem to address – coercion, undue inducements, exploitation, and protection from harm – are in fact not solved by adding further risk‐benefit constraints on prisoner research. (shrink)

This article poses a response to one argument supporting the force feeding of political prisoners. This argument assumes that prisoners have moral autonomy and thus cannot be force fed in the early stages of their hunger strike. However, as their fasting progresses, their cognitive competence declines, and they are no longer autonomous. Since they are no longer autonomous, force feeding becomes justified. This article questions the recurrent citation of a paper in empirical support of the claim that hunger (...) strike causes mental disorders or cognitive impairments. The paper, written by Daniel Fessler, partially relies on the Minnesota Starvation Experiment conducted in 1944 to 1945 for scientific support. Using widely accepted criteria for assessing the ethical acceptability of clinical research, we argue that the Minnesota Starvation Experiment had significant scientific shortcomings and is a case of unethical research. From this, we question the appropriateness of citing the Minnesota Starvation Experiment and consequently Fessler’s paper. If Citing Fessler’s paper becomes problematic, this particular argument for the force feeding of prisoners loses much of its strength. (shrink)

"An important contribution to contemporary jurisprudential debate and to legal thought more generally, Just Interpretations is far ahead of currently available work."--Peter Goodrich, author of Oedipus Lex "I was struck repeatedly by the clarity of expression throughout the book. Rosenfeld's description and criticism of the recent work of leading thinkers distinguishes his work within the legal theory genre. Furthermore, his own theory is quite original and provocative."--Aviam Soifer, author of Law and the Company We Keep.

During the Third Reich, state‐sponsored violence was linked to scientific research on many levels. Prisoners were used as involuntary subjects for medical experiments, and body parts from victims were used in anatomy and neuropathology on a massive scale. In many cases, such specimens remained in scientific collections and were used until long after the war. International bioethics, for a long time, had little to say on the issue. Since the late 1980s, with a renewed interest in the Holocaust (...) and other Nazi crimes, a consensus has increasingly taken hold that research on human tissues and body parts from the Nazi era is inadmissible, and that such specimens should be removed from scientific collections and buried. The question of what to do with scientific data obtained from these sources has not received adequate attention, however, and remains unsolved. This paper traces the history of debates about the ethical implications of using human tissue or body parts from the Nazi period for scientific purposes, primarily in the fields of anatomy and neuropathology. It also examines how this issue, from after the war until today, influenced the establishment of legal and bioethical norms on the use of human remains from morally tainted sources, with a particular emphasis on Germany and Austria. It is argued that the use of such specimens and of data derived from them is unethical not only because of potential harms to posthumous rights of the victims, but also because such use constitutes a moral harm to society at large. (shrink)

This paper explores the issue of prisoners' rights. The conditions of incarcerated people in jails and prisons include psychological and physical deterioration brought on by their condition of confinement. The one sanction that has been debated extensively in the United States is the death penalty. Yet there are numerous losses or deprivations short of death that we might impose on legal offenders. In addition to broader issues such as the nature of rights and the basic moral (...) class='Hi'>rights possessed by individuals, issues specific to the rights of serious legal offenders are distinguished and discussed. The latter issues include whether offenders forfeit all or some of their moral rights, whether their retained rights are less stringent, whether the state has any obligation to facilitate exercise of their retained rights, and what specific rights prisoners retain or acquire. (shrink)

This article investigates whether or not theories of justice from political philosophy, first, support the position that health research should contribute to justice in global health, and second, provide guidance about what is owed by international clinical research (ICR) actors to parties in low- and middle-income countries. Four theories—John Rawls's theory of justice, the rights-based cosmopolitan theories of Thomas Pogge and Henry Shue, and Jennifer Ruger's health capability paradigm—are evaluated. The article shows that three of the four (...) theories require the conduct of health research for justice in global health. The theories help identify the ends of justice to which ICR is to contribute, but they cannot tell us how to organize ICR to promote these ends. Aside from Ruger's health capability paradigm, the theories also lack an allocative principle for assigning specific duties to specific actors. This creates difficulties for establishing obligations for certain types of ICR actors. (shrink)

The return of research results to populations and individuals is increasingly recognised as both important but ethically complicated. In the USA, there are few studies or detailed evidence-based practices on the return of research results to individuals who are incarcerated. In general, return of research results is not required with some exceptions; however, there are reasons to believe that in many cases returning results is most consistent with the ethical conduct of research. With individuals who are (...) incarcerated, specific considerations for this historically disadvantaged population should be addressed. These are privacy, therapeutic misconception, paternalism, actionability and communication. If research results are returned, the initial consent process should consider thoroughness regarding privacy rights, the researchers’ role, clarity around next steps and communication methods. Prison leadership should be key stakeholders in the process to streamline communication. Returning research results can be a method to counter historical and current paternalism in the carceral setting, while shifting the culture on how research is understood and conducted in carceral settings. The decision to return results should balance benefits, risks and research ethics. Further research is needed to identify and implement optimal approaches for returning results in this population. (shrink)

Ravelingien et al have suggested that early human xenotransplantation trials should be carried out on patients who are in a permanent vegetative state (PVS) and who have previously granted their consent to the use of their bodies in such research in the event of their cortical death. Unfortunately, their philosophical defence of this suggestion is unsatisfactory in its current formulation, as it equivocates on the key question of the status of patients who are in a PVS. The solution proposed (...) by them rests on the idea that it should be up to people themselves to determine when they should be treated as dead. Yet the authors clearly believe (and state) that patients who are in a PVS are in fact dead. Finally, given the public good that their proposal is intended to achieve, the moral importance they place on the consent of a person to the use of his or her body in research is ultimately only defensible in so far as this consent represents the wishes of a living person. It is thus only a gentle caricature of their position to suggest that according to their account, consent to participation in xenotransplantation research is a “right of the living dead”. The equivocation by Ravelingien et al on the question of whether these people are living or dead means that they avoid confronting the implications of their argument. The solution proposed by Ravelingien et al to the problem of how we should proceed with xenotransplantation research is therefore not as neat as it first seems to be. (shrink)

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law and medicine, (...) truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

Boston Medical Center/Boston University Medical Campus recently reduced certain requirements for human subjects research where this could be done without adversely affecting the rights and welfare of participants, in anticipation of changes in the Final Common Rule. Modifications affected exempt and expedited categories, approval periods, ceding review, Quality Improvement/Quality Assessment activities, and some requirements for pregnant women, prisoners, and children. This case study may assist other institutions in responding to the Final Common Rule.

Doctoral programs at U.S. universities play a critical role in the development of human resources both in the United States and abroad. This volume reports the results of an extensive study of U.S. research-doctorate programs in five broad fields: physical sciences and mathematics, engineering, social and behavioral sciences, biological sciences, and the humanities. Research-Doctorate Programs in the United States documents changes that have taken place in the size, structure, and quality of doctoral education since the widely used 1982 (...) editions. This update provides selected information on nearly 4,000 doctoral programs in 41 subdisciplines at 274 doctorate-granting institutions. This volume also reports the results of the National Survey of Graduate Faculty, which polled a sample of faculty for their views on the scholarly quality of program faculty and the effectiveness of doctoral programs in preparing research scholars/scientists. This much-anticipated update of such an essential reference will be useful to education administrators, university faculty, and students seeking authoritative information on doctoral programs. (shrink)

Non-consensual organ procurement from prisoners in China raises serious questions regarding the ethics of Chinese transplant research. In their article, published in this issue of JME, Higgins and colleagues address these questions through the lens of publication ethics. They argue that, ‘while there are potentially compelling justifications for use [of unethical research] under some circumstances, these justifications fail when unethical practices are ongoing’.1 Consequently, they recommend non-publication of Chinese transplant research and call for a mass retraction (...) of the articles identified in their review.2 To support their argument, Higgins and colleagues appeal to internationally recognised guidelines from the WHO3 and the World Medical Association, which assert that ‘executed prisoners must not be considered as organ and/or tissue donors’ due to the inability to acquire valid consent.4 Failing to declare an immediate publishing moratorium for transplant research involving prisoners in China, they argue, ‘undermines efforts to stop transplant-related human rights abuses, taints the evidence base, and renders those who publish and use the research complicit in the continuing harm’.5 We agree with Higgins and colleagues that non-consensual organ procurement from prisoners in China is a crime against humanity. Ongoing human rights violations in Chinese prisons are well documented and universally condemned. We also agree that the subsequent use of data acquired from unethical research is morally complex. Nonetheless, Higgins and colleagues’ arguments leave us with three …. (shrink)

The purpose of this article is to show that animal rights are not necessarily at odds with the use of animals for research. If animals hold basic moral rights similar to those of humans, then we should consequently extend the ethical requirements guiding research with humans to research with animals. The article spells out how this can be done in practice by applying the seven requirements for ethical research with humans proposed by Ezekiel Emanuel, (...) David Wendler and Christine Grady to animal research. These requirements are i) social value, ii) scientific validity, iii) independent review, iv) fair subject selection, v) favorable risk-benefit ratio, vi) informed consent, and vii) respect for research subjects. In practice, this means that we must reform the practice of animal research to make it more similar to research with humans, rather than completely abolish the former. Indeed, if we banned animal research altogether, then we would also deprive animals of its potential benefits – which would be ethically problematic. (shrink)

Debates over the politicization of science have led some to claim that scientists have or should have a “right to research.” This article examines the political meaning and implications of the right to research with respect to different historical conceptions of rights. The more common “liberal” view sees rights as protections against social and political interference. The “republican” view, in contrast, conceives rights as claims to civic membership. Building on the republican view of rights, (...) this article conceives the right to research as embedding science more firmly and explicitly within society, rather than sheltering science from society. From this perspective, all citizens should enjoy a general right to free inquiry, but this right to inquiry does not necessarily encompass all scientific research. Because rights are most reliably protected when embedded within democratic culture and institutions, claims for a right to research should be considered in light of how the research in question contributes to democracy. By putting both research and rights in a social context, this article shows that the claim for a right to research is best understood, not as a guarantee for public support of science, but as a way to initiate public deliberation and debate about which sorts of inquiry deserve public support. (shrink)

The practice of paying prisoners to for their participation in research has long been debated, and the controversy is reflected in the differing policies in the U.S. prison systems. Empirical study of financial payments to inmates who enroll in research has focused on whether this practice is coercive. In this study, we examined whether monetary incentives have the potential to be unduly influential among fifty HIV‐positive prisoners. The majority of prisoners surveyed believed that inmates should (...) receive some compensation for their involvement in research and disagreed with statements suggesting that the offer of payment constitutes undue influence. However, a sense of potentially being susceptible to undue influence was significantly higher among participants who had spent a longer time in prison and had less education. Overall, our findings suggest that most prisoners feel that they would be able to make a decision about research enrollment that is not solely based on an offer of monetary payment. (shrink)

In his recent work exploring the role of science in democratic societies Kitcher claims that scientists ought to have a prominent role in setting the agenda for and limits to research. Against the backdrop of the claim that the proper limits of scientific inquiry is John Stuart Mill’s Harm Principle , he identifies the limits of inquiry as the point where the outcomes of research could cause harm to already vulnerable populations. Nonetheless, Kitcher argues against explicit limitations on (...) unscrupulous research on the grounds that restrictions would exacerbate underlying social problems. I show that Kitcher’s argument in favor of dissuading inquiry through conventional standards is problematic and falls prey to the same critique he offers in opposition to official bans. I expand the conversation of limiting scientific research by recognizing that the actions that count as ‘science’ are located in the space between ‘thinking’ and ‘doing’. In this space, we often attempt to balance freedom of research, as scientific speech, against the disparate impact citizens might experience in light of such research. I end by exploring if such disparate impact justifies limiting research, within the context of the United States, under Title VII of the Civil Rights Act of 1964 or under international human rights standards more generally. (shrink)

Background Respect for human rights and bioethical principles in prisons is a crucial aspect of society and is proportional to the well-being of the general population. To date, these ethical principles have been lacking in prisons and prisoners are victims of abuse with strong repercussions on their physical and mental health. Methods A systematic review was performed, through a MESH of the following words (bioethics) AND (prison), (ethics) AND (prison), (bioethics) AND (jail), (ethics) AND (jail), (bioethics) AND (penitentiary), (...) (ethics) AND (penitentiary), (prison) AND (human rights). Inclusion and exclusion criteria were defined and after PRISMA, 17 articles were included in the systematic review. Results Of the 17 articles, most were prevalence studies (n.5) or surveys (n.4), followed by cross-sectional studies (n.3), qualitative studies (n.1), retrospective (n.1) and an explanatory sequential mixed-methods study design (n.1). In most cases, the studies associated bioethics with prisoners’ access to treatment for various pathologies such as vaccinations, tuberculosis, hepatitis, HIV, it was also found that bioethics in prisons was related to the mental health of prisoners, disability, ageing, the condition of women, the risk of suicide or with the request for end-of-life by prisoners. The results showed shortcomings in the system of maintaining bioethical principles and respect for human rights. Conclusions Prisoners, in fact, find it difficult to access care, and have an increased risk of suicide and disability. Furthermore, they are often used as improper organ donors and have constrained autonomy that also compromises their willingness to have end-of-life treatments. In conclusion, prison staff (doctors, nurses, warders, managers) must undergo continuous refresher courses to ensure compliance with ethical principles and human rights in prisons. (shrink)

Ethics in research can be broadly divided into two epistemic dimensions. One dimension focuses on bureaucratic procedures (i.e., procedural ethics), while the other focuses on contextually and culturally contested practice of ethics in research (i.e., ethics in practice). Researchers experience both dimensions distinctly in their qualitative research. The review of ethics in prospective research through bureaucratic procedures aims to measure compliance with documented requirements relating to research participants, data management, consent, and ensure researchers can demonstrate (...) their ethical competence before they commence their research. However, researchers often experience unanticipated ethical issues within the context of their research; sometimes ethics-related situations, including language sensitivity, cultural humility, and data processing experienced by researchers can be very different from what was included in bureaucratic procedures. In this study, phenomena related to research ethics in practice, as experienced by social scientists (n = 5) in their qualitative research, are hermeneutically explored and interpreted. The selected phenomena represent the researchers’ lived experiences regarding the practice of participant autonomy, specifically exploring participants’ right to withdraw from research. These phenomena are interpreted from the theoretical perspectives of situational relativism and self-determined autonomy. The interpreted phenomena reveal the current practices in ethical management of data collected from participants before their decision to withdraw from research (i.e., withdrawal data), are predominantly focused on tangible forms of data (i.e., the information that can easily be distinguished from other data), but ethical concerns associated with intangible forms of data are often neglected. The intangible forms of data are experiential knowing and understanding that include, feeling, emotion, courage, respect, celebration, anger, and the sense of being and belonging. The study recommends that researchers and research professionals should exercise ethical sensitivity and humility towards intangible forms of data collected during qualitative research when participants withdraw their consent. (shrink)

Background Protecting a person’s right to privacy and confidentiality is important in healthcare services. As future health professionals, nursing students should bear the same responsibility as qualified health professionals in protecting patient privacy. Objectives To investigate nursing students’ practices of patient privacy protection and to identify factors associated with their practices. Research design A cross-sectional study design was adopted. A two-part survey was used to collect two types of data on nursing students: (1) personal characteristics, including demographics, clinical experience (...) and use of information and communication technology and social media and (2) practice of patient privacy protection, collected using the Patient Privacy Scale. Participants and research context: A total of 319 nursing students aged 18 or above, studying pre-registration nursing programmes and who had attended at least one block of clinical placement, were recruited from a university in Hong Kong. Ethical considerations The study received ethical approval from the Survey and Behavioural Research Ethics Committee of the Chinese University of Hong Kong. The participants were informed of the study aim and written consent was obtained before completing the survey. Findings: The mean total score on the Patient Privacy Scale was 119.7 out of 135. Nursing students who were regular users of Instagram and those who had never taken photographs with patients and hence did not need to obtain patient consent were associated with better practices of patient privacy protection (higher total scores on the Patient Privacy Scale). Conclusions The findings improve our understanding of nursing students’ practice of patient privacy protection and the associated factors. This will inform the development and revision of current strategies to enhance nursing students’ practice of patient privacy protection, especially their use of social media. (shrink)

Existing ethics guidelines, influential literature and policies on ethical research generally focus on real-time data collection from humans. They enforce individual rights and liberties, thereby lowering need for aggregate protections. Although dependable, emerging public health research paradigms like research using public health data raise new challenges to their application. Unlike traditional research, RUPD is population-based, aligned to public health activities, and often reliant on pre-collected longitudinal data. These characteristics, when considered in relation to the generally (...) lower protective ethico-legal frameworks of the Global South, including Africa, highlight ethical gaps. Health and demographic surveillance systems are examples of public health programs that accommodate RUPD in these contexts. We set out to explore the perspectives of professionals with a working knowledge of these systems to determine practical ways of appropriating the foundational principles of health research to advance the ever growing opportunities in RUPD. We present their perspectives and in relation to the literature and our ethical analysis, make context relevant recommendations. We further argue for the development of a framework founded on the discussions and recommendations as a minimum base for achieving optimal ethics for optimal RUPD in the Global South. (shrink)

In this essay I develop and defend a theory of state punishment within a wider conception of political legitimacy. While many moral theories of punishment focus on what is deserved by criminals, I theorize punishment within the specific context of the state's relationship to its citizens. Central to my account is Rawls's “liberal principle of legitimacy,” which requires that all state coercion be justifiable to all citizens. I extend this idea to the justification of political coercion to criminals qua citizens. (...) I argue that the liberal principle of legitimacy implicitly requires states to respect the basic political rights of those who are guilty of committing crimes, thus prohibiting capital punishment. (shrink)

Ethical guidelines commonly state that research subjects should have a right to withdraw consent to participate. According to the guidelines we have studied, this right applies also to research on biological samples. However, research conducted on human subjects themselves differs in important respects from research on biological samples. It is therefore not obvious that the same rights should be granted research participants in the two cases. This paper investigates arguments for and against granting a (...) right to withdraw consent to research on biobank samples. We conclude that (1) there are no explicit arguments for such a right in the guidelines we have studied, (2) the arguments against such a right are inconclusive, (3) considerations of autonomy, privacy, personal integrity, and trust in medical research provide sufficient reasons for granting a right to withdraw consent to research on biobank samples, (4) in certain cases, research participants should be allowed to waive this right. (shrink)

BackgroundThe EU’s 2006 Paediatric Regulation aims to support authorisation of medicine for children, thus effectively increasing paediatric research. It is ethically imperative to simultaneously establish procedures that protect children’s rights.MethodThis study endeavours (a) to evaluate whether a template consent form designed by the Standing Working Group of the German-Research-Ethics-Committees (AKEK) adequately informs adolescents about research participation, and (b) to investigate associated phenomena like therapeutic misconception and motives for research participation. In March 2016 a questionnaire study (...) was conducted among 279 pupils (mean age 13.1 years) of a secondary school in northern Germany.ResultsA majority of participants showed a general good understanding of foundational research ethics concepts as understood from the AKEK consent form. Nevertheless, our data also suggests possible susceptibility to therapeutic misconception. Own health concerns and pro-social considerations were found to be significant motivational factors for participating in research, while anticipation of pain lessens likelihood of participation. Advice from trusted others is an important decisional influence, too. Furthermore, data security was found to be a relevant aspect of adolescents’ decision-making process.ConclusionBearing in mind adolescents’ generally good understanding, we infer the lack of knowledge about medical research in general to be one source of therapeutic misconception. To further improve the quality of consent we propose a multi-staged approach whereby general research education is completed before an individual becomes a patient or potential participant. To the best of our knowledge this is the first German questionnaire-study addressing issues of informed consent in a large under-age sample. (shrink)

An incisive and sympathetic examination of the case for ending the practice of imprisonment Despite its omnipresence and long history, imprisonment is a deeply troubling practice. In the United States and elsewhere, prison conditions are inhumane, prisoners are treated without dignity, and sentences are extremely harsh. Mass incarceration and its devastating impact on black communities have been widely condemned as neoslavery or “the new Jim Crow.” Can the practice of imprisonment be reformed, or does justice require it to be (...) ended altogether? In The Idea of Prison Abolition, Tommie Shelby examines the abolitionist case against prisons and its formidable challenge to would-be prison reformers. Philosophers have long theorized punishment and its justifications, but they haven’t paid enough attention to incarceration or its related problems in societies structured by racial and economic injustice. Taking up this urgent topic, Shelby argues that prisons, once reformed and under the right circumstances, can be legitimate and effective tools of crime control. Yet he draws on insights from black radicals and leading prison abolitionists, especially Angela Davis, to argue that we should dramatically decrease imprisonment and think beyond bars when responding to the problem of crime. While a world without prisons might be utopian, The Idea of Prison Abolition makes the case that we can make meaningful progress toward this ideal by abolishing the structural injustices that too often lead to crime and its harmful consequences. (shrink)

This chapter proposes that encountering the Other through the face can be conditioned by social and built technologies. In “The Name of a Dog, or Natural Rights,” Emmanuel Levinas relates his experience as a prisoner of war, held in a forced-labor camp in Nazi Germany. He contrasts being denied his humanity by other humans, “called free” (DF, 152), while being recognized as human—indeed as a friend—by a dog the prisoners named Bobby. The episode suggests that though the concept (...) of the face applies to humans, the face is not enough for facing, at least not in the setting of the camp. By contrast, the prisoners seem able to face and be faced by Bobby, even if Levinas remains inconclusive about whether the face applies to animals elsewhere. It follows that the face is operating less like a property, and more like a capacity, a mode as Levinas calls it. But what conditions encountering an Other in this mode? If the face is neither sufficient for facing, nor prior to it, then what conditions facing (or effacing)? I propose that social structures, techniques, architectures, professional roles, and so on matter in coming to face (or efface) the Other. I conclude this from analyzing human-animal encounters in a scientific space of exception: the animal lab. Building on empirical accounts of animal research, I propose that animal research is populated by what I call “technologies of effacement.” These include: (1) built architectures; (2) entering and exit procedures; (3) protective garments and equipment; (4) identification and labeling techniques; and (5) experimental protocols. These technologies serve other manifest ends, but they operate to condition encounters between humans and animals in the lab: they help block the face of humans and animals. (shrink)

The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised by other well-understood data (...) collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum’s “contextual integrity” theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts—healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. (shrink)

In this paper I appropriate the philosophical critique of Michel Foucault as it applies to the engagement of Western science and indigenous peoples in the context of biomedical research. The science of population genetics, specifically as pursued in the Human Genome Diversity Project, is the obvious example to illustrate the contraposition of modern science and ‘indigenous science’, the tendency to depreciate and marginalize indigenous knowledge systems, and the subsumption of indigenous moral preferences in the juridical armature of international human (...) rights law. I suggest that international bioethicists may learn from Foucault’s critique, specifically of the need for vigilance about the knowledge/power relation expressed by the contraposition of modern science and ‘indigeneity’. (shrink)

This article examines the role of rights in both governing and shaping women’s relationship with the reconstruction process and their position in the reconstructed society. Through four years of empirical research in the post-earthquake reconstruction process in Maharashtra, India, this article focuses upon how women’s rights in social reconstruction are contingent upon processes of recognition. From the United Nations to local women’s organising, the article considers how women’s rights to “determine the pattern of their lives and (...) the future of society” (United Nations Convention on the Elimination of All Forms of Discrimination Against Women (C.E.D.A.W.). General Recommendation No. 23 (1997), Article 7, para. 9.) are dependent upon processes of recognition. Through a critique of cultural, material and spatial acts and frameworks of recognition within the U.N., World Bank, State Government, public interest litigation, personal and nonformal law, rights are seen to actively and hierarchically construct either a modern, liberal subject or a religious, communitarian subject, which both either deny or prescribe agency. The experience of women’s organising reveals the possibility of reconstructing a feminist rights strategy of reflection. (shrink)