This paper is an attempt to present disclosive ethics as a framework for computer and information ethics – in line with the suggestions by Brey, but also in quite a different manner. The potential of such an approach is demonstrated through a disclosive analysis of facial recognition systems. The paper argues that the politics of information technology is a particularly powerful politics since information technology is an opaque technology – i.e. relatively closed to scrutiny. It presents (...) the design of technology as a process of closure in which design and use decisions become black-boxed and progressively enclosed in increasingly complex socio-technical networks. It further argues for a disclosive ethics that aims to disclose the nondisclosure of politics by claiming a place for ethics in every actual operation of power – as manifested in actual design and use decisions and practices. It also proposes that disclosive ethics would aim to trace and disclose the intentional and emerging enclosure of politics from the very minute technical detail through to social practices and complex social-technical networks. The paper then proceeds to do a disclosive analysis of facial recognition systems. This analysis discloses that seemingly trivial biases in recognition rates of FRSs can emerge as very significant political acts when these systems become used in practice. (shrink)

This essay provides a critique of mainstream computer ethics and argues for the importance of a complementary approach called disclosive computer ethics, which is concerned with the moral deciphering of embedded values and norms in computer systems, applications and practices. Also, four key values are proposed as starting points for disclosive studies in computer ethics: justice, autonomy, democracy and privacy. Finally, it is argued that research in disclosive computer ethics should be multi-level and (...) interdisciplinary, distinguishing between a disclosure level, a theoretical level, and an an application level. (shrink)

In this article, we discuss ethical issues related to using and disclosing artificial intelligence (AI) tools, such as ChatGPT and other systems based on large language models (LLMs), to write or edit scholarly manuscripts. Some journals, such as Science, have banned the use of LLMs because of the ethical problems they raise concerning responsible authorship. We argue that this is not a reasonable response to the moral conundrums created by the use of LLMs because bans are unenforceable and would encourage (...) undisclosed use of LLMs. Furthermore, LLMs can be useful in writing, reviewing and editing text, and promote equity in science. Others have argued that LLMs should be mentioned in the acknowledgments since they do not meet all the authorship criteria. We argue that naming LLMs as authors or mentioning them in the acknowledgments are both inappropriate forms of recognition because LLMs do not have free will and therefore cannot be held morally or legally responsible for what they do. Tools in general, and software in particular, are usually cited in-text, followed by being mentioned in the references. We provide suggestions to improve APA Style for referencing ChatGPT to specifically indicate the contributor who used LLMs (because interactions are stored on personal user accounts), the used version and model (because the same version could use different language models and generate dissimilar responses, e.g., ChatGPT May 12 Version GPT3.5 or GPT4), and the time of usage (because LLMs evolve fast and generate dissimilar responses over time). We recommend that researchers who use LLMs: (1) disclose their use in the introduction or methods section to transparently describe details such as used prompts and note which parts of the text are affected, (2) use in-text citations and references (to recognize their used applications and improve findability and indexing), and (3) record and submit their relevant interactions with LLMs as supplementary material or appendices. (shrink)

In his article "Disclosive Computer Ethics," Phillip Brey critiques mainstream computer ethics and argues for a disclosive computer ethic "which is concerned with the moral deciphering of embedded values and norms in computer systems, applications, and practices." 1 In this article I argue that DCE simply shifts the focus of MCE toward issues Brey deems important.

There are complex considerations when planning to disclose an attenuated psychosis syndrome diagnosis. In this review, we evaluate ethical, legal, and clinical perspectives as well as caveats related to full, non- and partial disclosure strategies, discuss societal implications, and provide clinical suggestions. Each of the disclosure strategies is associated with benefits as well as costs/considerations. Full disclosure promotes autonomy, allows for the clearest psychoeducation about additional risk factors, helps to clarify and/or correct previous diagnoses/treatments, facilitates early intervention and bolsters communication (...) between providers but there are important considerations involving heritability, comorbidity, culture, and stigma. Non-disclosure advances nonmaleficence by limiting stigma and stress, and confusion in a sensitive developmental period but is complicated by varying patient preferences and the possibility that, as new treatments without adverse effects become available, the risk with false positives no longer justifies the accompanying loss of autonomy. Partial disclosure balances ethical considerations by focusing on symptoms instead of labels, but evidence that laypersons may interpret this information as a pseudo-diagnosis and that symptoms alone also contribute to stigma limits the efficacy of this approach. In addition, there are notable societal considerations relating to disclosure involving conservatorship, the reach of insurance companies, and discrimination. We advocate a hybrid approach to disclosure and recommend future research aimed at understanding the effects of stigma on clinical course and a renewed focus on those help-seeking cases that do not transition but remain clinically relevant. (shrink)

When a health care professional contacts a health care attorney for advice about how to deal with a medical error involving a patient, what is the most ethically appropriate response? Honesty is the best policy; the ethical health lawyer should advise the client to tell the patient the truth. This advice is neither naïve nor impractical, as we will show. More importantly, it is without question the right thing to do for a number of sound reasons. It may not be (...) a natural inclination or an easy task to accomplish; several countervailing factors discourage health professionals from telling patients the truth about medical errors. However, we will argue that resistance to truthful disclosure can and should be overcome by rational arguments that also take into consideration the psychodynamics of the patient-health professional relationship. (shrink)

Researchers designing a clinical trial may be aware of disputed evidence of serious risks from previous studies. These researchers must decide whether and how to describe these risks in their model informed consent document. They have an ethical obligation to provide fully informed consent, but does this obligation include notice of controversial evidence? With ACCORD as an example, we describe a framework and criteria that make clear the conditions requiring inclusion of important controversial risks. The ACCORD model consent document did (...) not include notice of prior trials with excess death. We develop and explain a new standard labeled risk in equipoise. We argue that our approach provides an optimal level of integrity to protect the informational needs of the reasonable volunteers who agree to participate in clinical trials. We suggest language to be used in a model consent document and the informed consent discussion when such controversial evidence exists. (shrink)

In this case, it is noted that while DNA testing and methylation are being studied as biomarkers for high-grade squamous intraepithelial lesions in the anal canal, their efficacy is no...

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether (...) it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts. (shrink)

Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...) secondary and other research findings is often limited by reference to terms and concepts like “incidental,” “analytic validity,” “clinical validity,” “clinical relevance,” “clinical utility,” “clinical significance,” “actionability,” and “desirability.” These terms are used in different ways by different writers to describe obligations in different sorts of cases. -/- Underneath this definitional confusion is a general notion, supported by much of the literature, that findings only need to be disclosed when they surpass certain presumably objective or measureable thresholds, such as medical importance or scientific reproducibility. The problem is that there is significant variability in the way that these terms and concepts are used in the literature and, as such, in defining the scope of an obligation to return findings that surpasses the relevant thresholds. -/- The goal of this paper is to analyze the definitional muddle underlying the debate about returning genetic research findings, with the hope of answering a few questions. First, what is the range of definitions being used in this debate? Based on an extensive literature review, Part 1 will lay out a range of articulated definitions for each relevant term, with the goal of categorizing them into a handful of distinct types. Part 2 explains the definitional redundancy and confusion in the current literature, and, drawing from the terminological patterns identified in Part 1, outlines more cohesive building blocks to inform the development of future disclosure frameworks.Our minimum goal in articulating these conceptual building blocks is to promote clearer articulations of, and distinctions between, future disclosure frameworks. More ambitiously, we suggest which definitions and conceptualizations we consider most appropriate to use in future disclosure frameworks. Here, we seek to balance benefits to participants through the disclosure of important information with the minimization of undue burdens on individual researchers and the research enterprise more generally. -/- Our analysis builds upon the central philosophical distinction between concepts and conceptions. The basic idea is that the “concept” of X refers to the general (and relatively uncontroversial) structure/shape of X, while various “conceptions” of X are more particular, filled out, and controversial elaborations of the concept. In other words, “concepts” of X will be formal representations of X, while “conceptions” of X will be substantive interpretations of the key elements and relationships operating within that formal framework. (Implicit in this distinction is an important point about the nature of disagreement – namely, that in order for two or more parties to “disagree” about X as opposed to simply talk past one another, there must be at least enough shared agreement about X to know that the parties are referring to the same thing. A concept of X provides this point of common agreement, while competing conceptions of X mark the areas where disagreement arises.) In this paper, we will employ this distinction in a fundamental way to clarify exactly where the primary disagreements arise in the debate over disclosing genetic research findings. -/- We propose that, underlying all the seeming confusion and disagreement, there are three central and widely agreed upon concepts at work in this debate—validity, value, and volition. The first two concepts concern the nature of the information itself. An obligation to disclose only exists when findings are valid and have value but there are competing conceptions of how to determine or define validity and valuableness. The third concept—volition—pertains not to the information but rather to the person to whom it will be disclosed. Does that person want or not want the information, and what is the best way of determining this? Here, too, competing conceptions arise. Our key point, though, is that almost all of the ethical disagreement arises because of competing conceptions of these three concepts. Understanding and appreciating this key point can help to refocus the substantive debate by providing some common ground to start from in determining how best to interpret these shared concepts. This refocusing can, ideally, produce more productive debate and facilitate some progress in resolving it. (shrink)

Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information (...) to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed. (shrink)

Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information (...) to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed. (shrink)

ABSTRACTIn 1994, the Committee on Assessing Genetic Risks of the Institute of Medicine published their recommendations regarding the ethical issues raised by advances in genetics. One of the Committee's recommendation was to inform women when test results revealed misattributed paternity, but not to disclose this information to the women's partners. The Committee's reason for withholding such information was that “'genetic testing should not be used in ways that disrupt families”. In this paper, I argue that the Committee's conclusion in favour (...) of nondisclosure to the male partner is unethical. I argue that both parties ought to be informed. (shrink)

In 1994, the Committee on Assessing Genetic Risks of the Institute of Medicine published their recommendations regarding the ethical issues raised by advances in genetics. One of the Committee's recommendation was to inform women when test results revealed misattributed paternity, but not to disclose this information to the women's partners. The Committee's reason for withholding such information was that “'genetic testing should not be used in ways that disrupt families”. In this paper, I argue that the Committee's conclusion in favour (...) of nondisclosure to the male partner is unethical. I argue that both parties ought to be informed. (shrink)

BackgroundReturning neuroimaging incidental findings may create a challenge to research participants’ health literacy skills as they must interpret and make appropriate healthcare decisions based on complex radiology jargon. Disclosing IF can therefore present difficulties for participants, research institutions and the healthcare system. The purpose of this study was to identify the extent of the health literacy challenges encountered when returning neuroimaging IF. We report on findings from a retrospective survey and focus group sessions with major stakeholders involved in disclosing IF.MethodsWe (...) surveyed participants who had received a radiology report from a research study and conducted focus groups with participants, parents of child participants, Institutional Review Board members, investigators and physicians. Qualitative thematic analyses were conducted using standard group-coding procedures and descriptive summaries of health literacy scores and radiology report outcomes are examined.ResultsAlthough participants reported high health literacy skills, 67 % did not seek medical care when recommended to do so; and many participants in the focus groups disclosed they could not understand the findings described in their report. Despite their lack of understanding, participants desire to have information about their radiology results, and the investigators feel ethically inclined to return findings.ConclusionsThe language in clinically useful radiology reports can create a challenge for participants’ health literacy skills and has the potential to negatively impact the healthcare system and investigators conducting imaging research. Radiology reports need accompanying resources that explain findings in lay language, which can help reduce the challenge caused by the need to communicate incidental findings. (shrink)

Discussions of sexual ethics often focus on the wrong of treating another as a mere object instead of as a person worthy of respect. On this view, the task of sexual ethics becomes putting the other’s subjectivity above their status as erotic object so as to avoid the harms of objectification. Ward and Anderson argue that such a view disregards the crucial, moral role that erotic objecthood plays in sexual encounters. Important moral features of intimacy are disclosed through (...) the experience of being an erotic object for another, as well as in perceiving another as an erotic object. Drawing on phenomenology, especially the insights of Simone de Beauvoir, Ward and Anderson argue that erotic encounters are shaped by the human condition of ambiguity, where being an object for others is intertwined with bodily agency. Because sexual agency is complex in this way, theories of sexual ethics and responsibility must widen their focus beyond transparent communication and authoritative expressions of will. (shrink)

Few cross-national studies have been conducted on academic dishonesty. The aim of this study was to explore students’ disclosed levels of academic dishonesty between New Zealand and Nigeria. The measures obtained included incidence, acceptability, and justification of dishonest action. It was hypothesized that there would be differences between the two groups and that differences could be explained in terms of deontology, cultural relativism, utilitarianism, rational fair exchange, and/or response bias. There were 844 medical and health science students who participated in (...) the study and completed a questionnaire that explored incidence, acceptability, and justification of dishonest action. A binary logistic regression revealed that age and incidence were significant predictors of country allocation. Nigerian students reported more engagement in dishonest behaviors, and it is argued that these students have diverse cultural expectations, language variances, response strategies, norms, beliefs, and values. Educational interventions are essential to address concerns related to academic dishonesty such as promoting cross-cultural discourse, providing study skills programs, utilizing peer mentoring, creating formal exchange strategies, and endorsing honor codes. (shrink)

In the last decade, there has been increased recognition of the importance of disclosing and managing non-financial conflicts of interests to safeguard the objectivity, integrity, and trustworthiness of scientific research. While funding agencies and academic institutions have had policies for addressing non-financial interests in grant peer review and research oversight since the 1990s, scientific journals have been only recently begun to develop such policies. An impediment to the formulation of effective journal policies is that non-financial interests can be difficult to (...) recognize and define. Journals can overcome this problem by providing guidance concerning the types of non-financial interests that should be disclosed, including direct research interests, direct professional interests, expert testimony, involvement in litigation, holding a leadership position in a non-governmental organization, providing technical or scientific advice to a non-governmental organization, and personal or professional relationships. The guidance should apply to authors, editors, and reviewers. (shrink)

Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision-making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data may improve future (...) policy determinations. (shrink)

The growing commercialization of science has raised concerns about financial conflicts of interest (COIs). Evidence suggests that such conflicts threaten the integrity of research and the well-being of research participants. Trying to minimize these negative effects, federal agencies, academic institutions, and publishers have developed conflict-of-interest policies. Among such policies, recommendations or requirements to disclose financial COIs to potential research participants and patients have become commonplace. Here, I argue that disclosing conflicts of interest to potential research participants fails to achieve the (...) weighty moral goals that presumably ground such policies. This is so either because disclosure is simply a wrong means for achieving some of the goals in question or because, although disclosure could be an appropriate means for some of those goals, the way in which it is implemented prevents fulfillment of the desirable moral aim. (shrink)

Investigator and institutional financial conflicts of interest have raised concerns about both the integrity of clinical research and protecting the rights and welfare of research participants. In response, professional groups and governmental bodies have issued guidance for managing conflicts of interest to minimize their potential untoward effects. Although a variety of approaches have been offered, a common protection is to disclose financial interests in research to potential research participants as part of the recruitment and informed consent process. This approach reinforces (...) a basic norm of candor, ideally allowing potential research participants to evaluate whether financial interests should affect their decision to participate in research. Disclosure to potential research participants is viewed as an alternative to having regulators or research institutions limit or prohibit all financial interests in research, assuming that not all such interests are unacceptable. (shrink)

Recently, scholars have argued that disclosure of personal information is an effective mechanism for building high-quality relationships. However, personal information can focus attention on differences in demographically diverse teams. In an experiment using 37 undergraduate teams, we examine how sharing personal information by ethnically similar and ethnically distinct newcomers to a team affects team perceptions, performance, and behavior. Our findings indicate that the disclosure of personal information by ethnically distinct newcomers improves team performance. However, the positive impact on team performance (...) comes at a cost to the newcomers, who are perceived as less competent by others and experience heightened social discomfort in team interactions. Ironically, what benefits the ethnically diverse team may undermine its ethnically distinct members. This study highlights how the management of diversity may sometimes require making trade-offs between individual interests and those of the team. (shrink)

Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support (...) of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of “research results,” specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action. (shrink)

BackgroundClinical genomic professionals are increasingly facing decisions about returning incidental findings (IFs) from genetic research. Although previous studies have shown that research participants are interested in receiving IFs, yet there has been an argument about the extent of researcher obligation to return IFs. We aimed in this study to explore the perspectives of clinical genomics professionals toward returning incidental findings from genomic research.MethodsWe conducted a national survey of a sample (n = 113) of clinical genomic professionals using a convenient sampling. (...) A self-administered questionnaire was used to explore their attitudes toward disclosure of IFs, their perception of the duties to return IFs and identifying the barriers for disclosure of IFs. A descriptive analysis was employed to describe participants' responses.ResultsSixty-five (57.5%) respondents had faced IFs in their practice and 31 (27.4%) were not comfortable in discussing IFs with their research subjects. Less than one-third of the respondents reported the availability of guidelines governing IFs. The majority 84 (80%) and 69 (62.7%) of the study participants indicated they would return the IFs if the risk of disease threat ≥ 50% and 6–49%, respectively and 36 (31.9%) reported they have no obligation to return IFs.ConclusionClinical genomics professionals have positive attitudes and perceptions toward the returning IFs from genomic research, yet some revealed no duty to do so. Detailed guidelines must be established to provide insights into how genomics professionals should be handled IFs. (shrink)

Strategies for disclosing investigators' financial interests to potential research participants have been adopted by many research institutions. However, little is known about how decisions are made regarding disclosures of financial interests to potential research participants, including what is disclosed and the rationale for making these determinations. We sought to understand the attitudes, beliefs, and practices of institutional review board chairs, conflict of interest committee chairs, and investigators regarding disclosure of financial interests to potential research participants. Several themes emerged, including general (...) attitudes toward conflicts of interest, circumstances in which financial interests should be disclosed, rationales and benefits of disclosure, what should be disclosed, negative effects of and barriers to disclosure, and timing and presentation of disclosure. Respondents cited several rationales for disclosure, including enabling informed decision making, promoting trust in researchers and research institutions, and reducing legal liability. There was general agreement that disclosure should happen early in the consent process. Respondents disagreed about whether to disclose the amounts of particular financial interests. Clarifying the goals of disclosure and understanding how potential research participants use the information will be critical in efforts to ensure the integrity of clinical research and to protect the rights and interests of participants. (shrink)

The significance of narrative artworks as resources for, and possibly as instances of, philosophical thinking has increasingly been recognized over recent decades. Utilization of such resources in philosophy of religion has, however, been limited. Focusing on film in particular, this article develops an account of film’s importance for a ‘contemplative’ approach to philosophizing about religious ethics, an approach that prioritizes the elucidation of possibilities of sense over the evaluation of ‘truth claims’. Taking Dead Man Walking as a case in (...) point, the article shows how this film facilitates an enhanced comprehension of specific concepts, most notably the concepts of faith, truth and love, as they feature within a characteristically Christian form of life. (shrink)

Instrumental CSR perspectives suggest that selective investments in prosocial, voluntary behaviors are largely profit-driven, whereas institutional theory emphasizes legitimacy-seeking as a significant mechanism for explicit CSR disclosure. We test both profit-seeking and legitimacy-seeking mechanisms, derived from empirical findings of Western-oriented firms, in a unique setting to understand voluntary CSR disclosure in an Eastern context: South Korea. By examining voluntary disclosure of the 500 largest South Korean firms’ social contributions from 2006 to 2012, a time period purposefully encompassing the global financial (...) crisis, we highlight the limitations of corporate social responsibility theorizing when East meets West. Our findings suggest profitability is not significantly related to voluntary disclosure as predicted by Western, instrumental CSR literature. Overall, we found support for legitimacy-seeking mechanisms as the likelihood of disclosure increased for publicly listed firms and those employing a larger number of workers for all years between 2006 and 2012. Further, firms affiliated with chaebols are more likely to disclose prosocial behaviors prior to, and after, the GFC compared to firms that are not affiliated with chaebols regardless of profitability further suggesting that legitimacy-seeking mechanisms may underlie CSR reporting in Korean firms. (shrink)

INTRODUCTIONA PRELIMINARY NOTEI. THE PRESENT SCOPE AND SUBSTANCE OF SPERM DONORS’LEGAL AND ETHICAL OBLIGATIONSII. DUTY-BOUND SPERM DONORSA. Delineating the Suggested Ethical ObligationB. Is It the Genetic Link that Morally Binds Sperm Donors by Donor-Duty?III. SUPPORTIVE EVIDENCE FOR RECEPTIVENESS TO DONORDUTY: THE CASE OF DE-ANONYMIZATION OF SPERM DONORSA. Relevant Implications of the Removal of Donor AnonymityIV. ANALOGIZING DONOR-DUTY TO THE DUTY NOT TO INFECT OTHERSA. Mode of TransmissionB. The Public Health PerspectiveC. The Duty to WarnV. COMPETING RIGHTSA. The DCC’s Right to (...) Know Health-Related Information vs. the Donor’s Right to PrivacyB. The DCC’s Right to Know Health-Related Information vs. the Donor’s .. (shrink)

Debate surrounding the SUPPORT study highlights the absence of consensus regarding what information should be disclosed to potential research participants. Some commentators endorse the view that clinical research should be subject to high disclosure standards, even when it is testing standard-of-care interventions. Others argue that trials assessing standard-of-care interventions need to disclose only the information that is disclosed in the clinical care setting. To resolve this debate, it is important to identify the ethical concerns raised by clinical research and determine (...) what consent process is needed to address them. (shrink)

Currently, much hope for the protection of nature is pinned on the science of ecology. Without suggesting that we should pay less serious attention to science, I argue for a more pluralistic approach to the environmental and technological problems facing our time. I maintain that when ecology changes attitudes and ways of life, it does so by importing a language of engagement with nature rather than by remaining confined to a strictly scientific account. This language of engagement, which shows how (...) nature and natural things can be engaged by humans in a multiplicity of ways, I call disclosive discourse. Disclosive discourse, however, is not used exclusively by ecologists and other scientists. To the contrary, the great literary writers exemplify in their writings the ways this discourse can present nature and natural things in their most profound and powerful appeal. Moreover, disclosive discourse is not limited to words: artworks, too, are disclosive. By characterizing the deeper problem with which we are faced differently, as fundamentally technological rather than environmental, a more diversified plurality of alternatives to technology, not limited to those having to do with primarily nature, can be brought into relief and encouraged. (shrink)

Recent professional guidelines published by the General Medical Council instruct physicians in the UK to be honest and open in any financial agreements they have with their patients and third parties. These guidelines are in addition to a European policy addressing disclosure of physician financial interests in the industry. Similarly, In the US, a national open payments program as well as Federal regulations under the Affordable Care Act re-address the issue of disclosure of physician financial interests in America. These new (...) professional and legal changes make us rethink the fiduciary duties of providers working under new organizational and financial schemes, specifically their clinical fidelity and their moral and professional obligations to act in the best interests of patients. The article describes the legal changes providing the background for such proposals and offers a prima facie ethical analysis of these evolving issues. It is argued that although disclosure of conflicting interest may increase trust it may not necessarily be beneficial to patients nor accord with their expectations and needs. Due to the extra burden associated with disclosure as well as its implications on the medical profession and the therapeutic relationship, it should be held that transparency of physician financial interest should not result in mandatory disclosure of such interest by physicians. It could lead, as some initiatives in Europe and the US already demonstrate, to voluntary or mandatory disclosure schemes carried out by the industry itself. Such schemes should be in addition to medical education and the address of the more general phenomenon of physician conflict of interest in ethical codes and ethical training of the parties involved. (shrink)

A student considering a career as a financial advisor is confronted by a common industry practice that some consider misleading and unethical. The case fosters financial literacy by allowing students to connect theory to practice through the analysis of a highly realistic brokerage statement using Microsoft Excel. It permits an instructor to seamlessly inject an ethical component into an accounting or finance course while simultaneously sharpening students' understanding of key financial concepts such as bond valuation and yield to maturity.

Ethical, evidence-informed decision making is undermined by the grave concerns that have emerged over the trustworthiness of clinical trials published in biomedical journals. The inescapable conclusion from this growing body of research is that what we see, even in the most highly regarded peer-reviewed journals, cannot be trusted at face value. Concerns of inaccurate, biased, and insufficient reporting of trials are impossible to resolve without access to underlying trial data. Access to such data, including things like clinical study reports—huge, unabridged, (...) detailed reports of clinical trials—would minimise the risk of distortions and selective publication. But the FDA, the world’s greatest custodian of those data, just sits on them. We see no reason why FDA should not publicly release clinical study reports with minimal redactions. The European regulator is already doing this, but FDA’s holdings are far greater. Data transparency is not simply an “opportunity” FDA might consider, but rather an ethical imperative. The Blueprint is good but does not go far enough. We do not need gates, barriers and committees between us and access to aggregate reports on drugs and other interventions which we are prescribing or using daily. Let’s leave the nannies at home. (shrink)

A Correction to this paper has been published: https://doi.org/10.1007/s11841-021-00852-6.

This article explores an example of person-centred care: the work of so-called renal care coordinators. The empirical basis of the article consists of qualitative interviews with renal care coordinators, alongside participant observations of their patient interactions. During the analyses of the empirical material, I found that that one of the coordinators’ most fundamental ambitions is to get to know who the patient is. This is also a central tenet of person-centred care. The aim of the article is not only to (...) argue for the plausibility of this tenet, but also, and more importantly, to highlight and explore its implications in the context of healthcare, through the example of renal care coordination. By drawing on the philosophy of Hannah Arendt, the article shows that the disclosure of who the patient is that takes place in person-centred care requires speech and action, which are modes of human activity that initiate processes characterized by unpredictability, uncertainty, and irreversibility. This unpredictability, uncertainty, and irreversibility, found to be inherent in person-centred care, is then discussed in relation to the pursuit of certainty characterizing contemporary evidence-based medicine. At the end of the article the conclusion is drawn that, if healthcare is to be person-centred, it must find ways of accommodating the contradictory pursuits of certainty and uncertainty found in evidence-based medicine and person-centred care respectively. (shrink)

The use of genomic testing in pregnancy is increasing, giving rise to questions over how the information that is generated should be offered and returned in clinical practice. While these tests provide important information for prenatal decision-making, they can also generate information of uncertain significance. This paper critically examines three models for approaching the disclosure of variants of uncertain significance (VUS), which can arise from forms of genomic testing such as prenatal chromosomal microarray analysis (CMA). Contrary to prevailing arguments, we (...) argue that respect for reproductive autonomy does not justify adopting a model on which an offer to disclose VUS is a routine part of genetic counselling. Instead, we contend that a commitment both to solidarity between healthcare providers and pregnant women and to the acceptance of a novel principle of caution under normative uncertainty means that we should instead adopt a model of VUS disclosure that imposes a strong presumption against offering to disclose VUS. The upshot of this is that it should be standard practice to only offer to disclose VUS when this is requested by the woman undergoing CMA. We defend our position against claims that arise from an alleged right to such information and that a presumption against an offer will lead to inequity. (shrink)

Due to huge advancements in natural language processing (NLP) and machine learning, chatbots are gaining significance in the field of customer service. For users, it may be hard to distinguish whether they are communicating with a human or a chatbot. This brings ethical issues, as users have the right to know who or what they are interacting with (European Commission in Regulatory framework proposal on artificial intelligence. https://digital-strategy.ec.europa.eu/en/policies/regulatory-framework-ai, 2022). One of the solutions is to include a disclosure at the start (...) of the interaction (e.g., “this is a chatbot”). However, companies are reluctant to use disclosures, as consumers may perceive artificial agents as less knowledgeable and empathetic than their human counterparts (Luo et al. in Market Sci 38(6):937–947, 2019). The current mixed methods study, combining qualitative interviews (n = 8) and a quantitative experiment (n = 194), delves into users’ responses to a disclosed vs. undisclosed customer service chatbot, focusing on source orientation, anthropomorphism, and social presence. The qualitative interviews reveal that it is the willingness to help the customer and the friendly tone of voice that matters to the users, regardless of the artificial status of the customer care representative. The experiment did not show significant effects of the disclosure (vs. non-disclosure). Implications for research, legislators and businesses are discussed. (shrink)

There is widespread agreement that it would be both morally and legally wrong to treat a competent patient, or to carry out research with a competent participant, without the voluntary consent of that patient or research participant. Furthermore, in medical ethics it is generally taken that that consent must be informed. The most widely given reason for this has been that informed consent is needed to respect the patient’s or research participant’s autonomy. In this article I set out to (...) challenge this claim by considering in detail each of the three most prominent ways in which ‘autonomy’ has been conceptualized in the medical ethics literature. I will argue that whilst these accounts support the claim that consent is needed if the treatment of competent patients, or research on competent individuals, is to respect their autonomy, they do not support the claim that informed consent is needed for this purpose. (shrink)

As part of a larger research study, we present model language for disclosing financial interests in clinical research to potential research participants, and we describe the empirical basis and theoretical assumptions used in developing the language. The empirical process for creating appropriate disclosure language resulted in a generic disclosure statement for cases in which no risk to participants’ welfare or the scientific integrity of the research is expected, and nine more specific disclosure statements for cases in which some risk is (...) expected. The disclosure statements are not meant to be canonical, but were instead designed to reflect the typical situations in which disclosure of financial interest might be considered by an institutional review board or conflict of interest committee. Individual institutions could modify key phrases to suit their purposes, and others could use the language in future empirical work on informed consent to better refine the options for disclosing financial interests in clinical research. (shrink)

Background: More and more quantitative information is becoming available about the risks of complications arising from medical treatment. In everyday practice, this raises the question whether each and every risk, however low, should be disclosed to patients. What could be good reasons for doing or not doing so? This will increasingly become a dilemma for practitioners.Objective: To report doctors’ views on whether to disclose or withhold information on low risks of complications.Methods: In a qualitative study design, 37 respondents were included. (...) Focus group interviews were held with 22 respondents and individual in-depth interviews with 15.Results: Doctors have doubts about disclosing or withholding information on complication risk, especially in a risk range of 1 in 200 to 1 in 10 000. Their considerations on whether to disclose or to withhold information depend on a complicated mix of patient and doctor-associated reasons; on medical and personal considerations; and on the kind and purpose of intervention.Discussion: Even though the degree of a risk is important in a doctor’s considerations, the severity of the possible complications and patients’ wishes and competencies have an important role as well. Respondents said that low risks should always be communicated when there are alternatives for the intervention or when the patient may prevent or mitigate the risk. When the appropriateness of disclosing risks is doubtful, doctors should always tell their patients that no intervention is without risk, give them the opportunity to gather all the information they need or want, and enable them to detect a complication at an early stage. (shrink)