Classic statements of research ethics advise against permitting physician-investigators to obtain consent for research participation from patients with whom they have preexisting treatment relationships. Reluctance about “dual-role” consent reflects the view that distinct normative commitments govern physician–patient and investigator–participant relationships, and that blurring the research–care boundary could lead to ethical transgressions. However, several features of contemporary research demand reconsideration of the ethics of dual-role consent. Here, we examine three arguments advanced against dual-role consent: that it creates role conflict for the (...) physician-investigator; that it can compromise the voluntariness of the patient-participant’s consent; and that it promotes therapeutic misconceptions. Although these concerns have merit in some circumstances, they are not dispositive in all cases. Rather, their force—and the ethical acceptability of dual-role consent—varies with features of the particular study. As research participation more closely approximates usual care, it becomes increasingly acceptable, or even preferable, for physicians to seek consent for research from their own patients. It is time for a more nuanced approach to dual-role consent. (shrink)

I focus here on archaeologists who work with Indigenous descendant communities in North America and address two key questions raised by their practice about the advantages of situated inquiry. First, what exactly are the benefits of collaborative practice—what does it contribute, in this case to archaeology? And, second, what is the philosophical rationale for collaborative practice? Why is it that, counter-intuitively for many, collaborative practice has the capacity to improve archaeology in its own terms and to provoke critical scrutiny of (...) its goals and methodological norms? The broader import, I argue, is a rethinking of traditional views of objectivity that takes social, contextual values to be a resource for improving what we know, rather than inevitably a source of compromising error and distortion (as discussed in detail in Chapters 7 and 9). (shrink)

In this book, Alan Wertheimer seeks to identify when a transaction or relationship can be properly regarded as exploitative--and not oppressive, manipulative, or morally deficient in some other way--and explores the moral weight of taking ...

BackgroundThe neurotechnology behind brain-computer interfaces (BCIs) raises various ethical questions. The ethical literature has pinpointed several issues concerning safety, autonomy, responsibility and accountability, psychosocial identity, consent, privacy and data security. This study aims to assess BCI users’ experiences, self-observations and attitudes in their own right and looks for social and ethical implications.MethodsWe conducted nine semi-structured interviews with BCI users, who used the technology for medical reasons. The transcribed interviews were analyzed according to the Grounded Theory coding method.ResultsBCI users perceive themselves (...) as active operators of a technology that offers them social participation and impacts their self-definition. Each of these aspects bears its own opportunities and risks. BCIs can contribute to retaining or regaining human capabilities. At the same time, BCI use contains elements that challenge common experiences, for example when the technology is in conflict with the affective side of BCI users. The potential benefits of BCIs are regarded as outweighing the risks in that BCI use is considered to promote valuable qualities and capabilities. BCI users appreciate the opportunity to regain lost capabilities as well as to gain new ones.ConclusionsBCI users appreciate the technology for various reasons. The technology is highly appreciated in cases where it is beneficial in terms of agency, participation and self-definitions. Rather than questioning human nature, the technology can retain and restore characteristics and abilities which enrich our lives. (shrink)

Scholars have debated the role that altruistic considerations play—and should play—in recruitment and decision-making processes for clinical trials. Little empirical data are available to support their various perspectives. We analyzed 140 audiotaped pediatric informed consent sessions, of which 95 (68%) included at least one discussion of how participation in a cancer clinical trial might benefit: 1) the pursuit of scientific knowledge generally; 2) other children with cancer specifically; and 3) “the future” and other vaguely defined recipients. Clinicians initiated most (80%) (...) of these discussions of altruism. The enrollment rate of children in the clinical trial was high (83%) overall, but not higher among children whose parents were involved in an altruism-oriented discussion. These findings suggest that: (1) clinicians invoke a spectrum of altruistic considerations rather than a single monothematic notion of altruism, and (2) the effect of altruistic considerations on subsequent enrollment decisions is marginal. While further research on this topic is warranted, bioethical debate should strive to reflect the diversity of altruistic discourse in clinical research encounters and to place this discourse in the context of other, including nonaltruistic, considerations. (shrink)

The development of novel neurotechnologies, such as brain-computer interface (BCI) and deep-brain stimulation (DBS), are very promising in improving the welfare and life prospects many people. These include life-changing therapies for medical conditions and enhancements of cognitive, emotional, and moral capacities. Yet there are also numerous moral risks and uncertainties involved in developing novel neurotechnologies. For this reason, the progress of novel neurotechnology research requires that diverse publics place trust in researchers to develop neural interfaces in ways that are overall (...) beneficial to society and responsive to ethical values and concerns. In this article, we argue that researchers and research institutions have a moral responsibility to foster and demonstrate trustworthiness with respect to broader publics whose lives will be affected by their research. Using Annette Baier’s conceptual analysis of trust, which takes competence and good will to be its central components, we propose that practices of ethical reflexivity could play a valuable role in fostering the trustworthiness of individual researchers and research institutions through building and exhibiting their moral competence and good will. By ethical reflexivity, we mean the reflective and discursive activity of articulating, analyzing, and assessing the assumptions and values that might be underlying their ethical actions and projects. Here, we share an ethics dialog tool—called the Scientific Perspectives and Ethics Commitments Survey (or SPECS)—developed by the University of Washington’s Center of Neurotechnology (CNT) Neuroethics Thrust. Ultimately, the aim is to show the promise of ethical reflexivity practices, like SPECS, as a method of enhancing trustworthiness in researchers and their institutions that seek to develop novel neurotechnologies for the overall benefit of society. (shrink)

Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision‐making about how the research is conducted and what is produced and published out of it.

What is the basis for arguing that a volunteer army exploits citizens who lack civilian career opportunities? How do we determine that a doctor who has sex with his patients is exploiting them? In this book, Alan Wertheimer seeks to identify when a transaction or relationship can be properly regarded as exploitative--and not oppressive, manipulative, or morally deficient in some other way--and explores the moral weight of taking unfair advantage. Among the first political philosophers to examine this important topic from (...) a non-Marxist perspective, Wertheimer writes about ordinary experience in an accessible yet philosophically penetrating way. He considers whether it is seriously wrong for a party to exploit another if the transaction is consensual and mutually advantageous, whether society can justifiably prohibit people from entering into such a transaction, and whether it is wrong to allow oneself to be exploited.Wertheimer first considers several contexts commonly characterized as exploitive, including surrogate motherhood, unconscionable contracts, the exploitation of student athletes, and sexual exploitation in psychotherapy. In a section outlining his theory of exploitation, he sets forth the criteria for a fair transaction and the point at which we can properly say that a party has consented. Whereas many discussions of exploitation have dealt primarily with cases in which one party harms or coerces another, Wertheimer's book focuses on what makes a mutually advantageous and consensual transaction exploitive and analyzes the moral and legal implications of such exploitation. (shrink)

BackgroundAn increasing number of studies utilize intracranial electrophysiology in human subjects to advance basic neuroscience knowledge. However, the use of neurosurgical patients as human research subjects raises important ethical considerations, particularly regarding informed consent and undue influence, as well as subjects’ motivations for participation. Yet a thorough empirical examination of these issues in a participant population has been lacking. The present study therefore aimed to empirically investigate ethical concerns regarding informed consent and voluntariness in Parkinson’s disease patients undergoing deep brain (...) stimulator (DBS) placement who participated in an intraoperative neuroscience study.MethodsTwo semi-structured 30-minute interviews were conducted preoperatively and postoperatively via telephone. Interviews assessed participants’ motivations for participation in the parent intraoperative study, recall of information presented during the informed consent process, and participants’ postoperative reflections on the research study.ResultsTwenty-two participants (mean age = 60.9) completed preoperative interviews at a mean of 7.8 days following informed consent and a mean of 5.2 days prior to DBS surgery. Twenty participants completed postoperative interviews at a mean of 5 weeks following surgery. All participants cited altruism or advancing medical science as “very important” or “important” in their decision to participate in the study. Only 22.7% (n = 5) correctly recalled one of the two risks of the study. Correct recall of other aspects of the informed consent was poor (36.4% for study purpose; 50.0% for study protocol; 36.4% for study benefits). All correctly understood that the study would not confer a direct therapeutic benefit to them.ConclusionEven though research coordinators were properly trained and the informed consent was administered according to protocol, participants demonstrated poor retention of study information. While intraoperative studies that aim to advance neuroscience knowledge represent a unique opportunity to gain fundamental scientific knowledge, improved standards for the informed consent process can help facilitate their ethical implementation. (shrink)

In Exploitation: What It Is and Why It's Wrong (2003), I argued that the major non‐Marxist “ethically thick” approaches to exploitation were not successful in capturing what we find morally objectionable in paradigmatic cases of exploitation. My argument there focused on the consequentialist account of exploitation defended by Robert Goodin. Here I revisit the question of whether the recent multi‐level act consequentialist account of exploitation defended by Richard Arneson is successful. I raise questions about the nature of the account, and (...) conclude that it is a possibly coherent and ultimately inadequate account of the wrongness of exploitation. (shrink)

If people sometimes participate in research because of altruism—because they want to help in the search for treatments—should we revise our views about what kinds of experiments are ethical? If participants act out of altruism, we might let them accept greater risks than we would if they are motivated only by a desire for personal gain. But how can we know when participants are genuinely altruistic?

The term “exploitation” has gained wide currency in recent discussions of biomedical and research ethics. This is due in no small measure to the influence of Alan Wertheimer’s path-breaking work on the topic (Wertheimer 1999, 2011). Wertheimer presented a clear and compelling non-Marxist account of the concept of exploitation—one that stressed the connection between exploitation and unfair distributive outcomes. On this account, when one party exploits another, she takes advantage of the other to gain unfairly. A number of contemporary bioethicists (...) have accepted Wertheimer’s account of exploitation and have proceeded to apply it to a range of issues in research ethics (Hawkins and Emanuel 2008; Miller and Brody .. (shrink)

: Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision-making about how the research is conducted and what is produced and published out of it.