This chapter contains sections titled: Information Management: Confidentiality, Autonomy and Non‐Directiveness Predictive Genetic Testing Childhood Genetic Testing Genetic Screening Informed Consent to Screening Newborn Screening Carrier Screening Prenatal Screening Susceptibility Screening Further Information Management Goals of Genetic Screening: Public Health vs Individual Choice Conclusion References Further reading.

Typically seniors like others choose to avoid institutional care. However, when age-related infirmity requires it, they not only enter into the care of others, but they also do so as vulnerable members of society. As their frailty increases with age, so does their dependence on the professionals who care for them and on the enforcement of policies concerning their care. A qualitative case study involving seniors and their carers revealed that breaches of confidentiality, unprofessional behaviour and the non-enforcement of policy, (...) continue to hide the physical and emotional abuse perpetrated by nursing and other staff on vulnerable consumers. Professional ethics, including at a corporate level, enforcing policy, protecting whistleblowers and creating reporting mechanisms for aged care researchers, are amongst the recommendations arising from this study. (shrink)

In the practice of medicine there has long been a conflict between patient management and respect for patient autonomy. In recent years this conflict has taken on a new form as patient management has increasingly been shifted from physicians to insurers, employers, and health care bureaucracies. The consequence has been a diminshment of both physician and patient autonomy and a parallel diminishment of medical record confidentiality. Although the new managers pay lip service to the rights of (...) patients to confidentiality of their records, in fact they advocate very liberal medical records access policies. They argue that a wide range of parties has a need to know the contents of individually identifiable medical records in order to control costs, promote quality of care, and undertake research in the public interest. Broad interpretations of the need to know, however, are at odds with strict interpretations of the right to confidentiality. Strict confidentiality policies require that, with few exceptions, patient consent be obtained whenever a patient's record is used outside the treatment context. The traditional criterion for overriding the consent requirement has been that without the override some harm would directly result. This rule is now challenged by the claim that patients have a duty to make their records available for a wide range of research and public health purposes. The longstanding tension between physician responsibility for patient welfare and respect for patient autonomy is being replaced by a debatable requirement that both physician and patient autonomy be subordinated to the goals of data collection and analysis. (shrink)

Digital medicine is a medical treatment that combines technology with drug delivery. The promises of this combination are continuous and remote monitoring, better disease management, self-tracking, self-management of diseases, and improved treatment adherence. These devices pose ethical challenges for patients, providers, and the social practice of medicine. For patients, having both informed consent and a user agreement raises questions of understanding for autonomy and informed consent, therapeutic misconception, external influences on decision making, confidentiality and privacy, and device (...) dependability. For providers, digital medicine changes the relationship where trust can be verified, clinicians can be monitored, expectations must be managed, and new liability risks may be assumed. Other ethical questions include direct third-party monitoring of health treatment, affordability, and planning for adverse events in the case of device malfunction. This article seeks to lay out the ethical landscape for the implementation of such devices in patient care. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Confidentiality and Its LimitsMaude Laliberté, John D. Lantos, and Sonia GowdaMultiple sclerosis is believed to be an autoimmune disease of the central nervous system. However, according to Italian physician Paolo Zamboni, it is related to cerebrospinal vascular insufficiency. Zamboni claims that MS can be treated by remedying this condition with venous angioplasty. This surgery is offered as treatment for MS in various countries—Poland, Bulgaria, and Costa Rica, for example. (...) But the Medical Board of Quebec, Canada, does not allow its members to perform the surgery and strongly advises patients against seeking it elsewhere. This opposition is based on the lack of evidence to support the procedure and the serious risks associated with it (including venous thrombosis, stroke, and pulmonary embolism). As a result, many Canadian MS patients have traveled to other countries to receive the surgery. Quebec physicians have been reluctant to provide surgical follow-up for patients who undergo the surgery in other countries due to the lack of information regarding the procedure. No alternative treatments are effective to partially or completely cure MS, and so the treatments available in Canada aim only to manage its symptoms.Jade is a forty-year-old Canadian woman with MS. She is on long-term disability leave, complains of growing fatigue and muscle stiffness, and has painful sensations in her limbs. She has been followed by an interdisciplinary team in a specialized hospital in Quebec for the past twenty years, since she was diagnosed. At her last appointment, Jade told her physical therapist that she recently underwent the experimental Zamboni surgery in Poland, despite her physician’s strong recommendation not to. Jade fears her physician’s reaction, so she asks the physical therapist to keep this information from the rest of her medical team.Jade is shy and tends to distrust health care professionals. It took many years for her physical therapist to gain her trust and to develop a positive therapeutic relationship with her. However, the physical therapist knows that serious complications can occur in patients who have had Zamboni’s surgery. Not telling Jade’s physician about the surgery could result in harm; Jade could have complications that are not recognized. Providing the information to the rest of the team would allow them to adjust her treatment to respond to the surgery and give her information and postoperative education that she will need. Moreover, keeping this secret could threaten team cohesion and trust if they find out about it later.Jade decided to undergo a risky surgery against her doctor’s advice in the hope of improving her quality of life. This was her autonomous choice. How should the physical therapist respond?CommentaryMaude Laliberte (bio)Laws and professional codes of ethics direct clinicians to respect their patients’ autonomy through confidentiality and informed consent unless there are compelling reasons not to do so. Health professionals are deeply committed to helping patients; above all, they want to avoid harming them. Therefore, a key component of this case is the possibility that respecting Jade’s desire to conceal information from the team may put her at direct risk if any postoperative complications are not detected, and at indirect risk if Jade’s trust in her medical team is undermined to the point where she turns away from them.The physical therapist must determine if the possible physical risks to Jade are imminent and serious enough to go against her autonomous choice. One risk that can occur following Zamboni’s surgery is inflammation of a vein caused by a blood clot. This is a life-threatening situation (although it may not be a likely complication for Jade). But the physical therapist can teach Jade to recognize the physical signs that can alert her to this problem, giving her ample time to seek treatment. Thus, even though she may be in danger from a life-threatening risk, there may be ways to manage it besides violating her confidentiality.The respect for autonomous choice is a crucial aspect of our democratic values. It promotes a process of exchange in the therapeutic alliance: the professional guides and informs the patient, but the patient is a partner in care planning and treatment. An important... (shrink)

The introduction of non-invasive prenatal testing in healthcare systems around the world offers an opportunity to reconsider funding policies for prenatal screening. In some countries with universal access healthcare systems, pregnant women and their partners are asked to pay for NIPT. In this paper, we discuss two important rationales for charging women for NIPT: to prevent increased uptake of NIPT and to promote informed choice. First, given the aim of prenatal screening, high or low uptake rates are not intrinsically desirable (...) or undesirable. Using funding policies to negatively affect uptake, however, is at odds with the aim of screening. Furthermore, copayment disproportionally affects those of lower socioeconomic status, which conflicts with justice requirements and impedes equal access to prenatal screening. Second, we argue that although payment models may influence pregnant women’s choice behaviours and perceptions of the relevance of NIPT, the copayment requirement does not necessarily lead to better-informed choices. On the contrary, external influences on women’s personal choices for or against prenatal screening should ideally be avoided. To improve informed decision-making, healthcare systems should instead invest in adequate non-directive, value-focused pretest counselling. This paper concludes that requiring copayments for NIPT in universal access healthcare systems fails to promote reproductive autonomy and is unfair. (shrink)

When the complete human genomehas been sequenced, everyone of us will becomea potential candidate for genetic counselingand testing. Within a short period of timeeveryone will obtain his personal geneticpassport identifying deleterious andsusceptibility genes. With the availability ofpresymptomatic tests for late-onset disordersand the possibilities of prevention andtreatment, the conflict between directivenessand non-directiveness will dominate thecounseling setting. Despite general consent onproviding genetic information in a nondirectivefashion to preserve value neutrality andenhance client's autonomy, there is no acceptedcommon definition of what non-directivenessreally (...) is or ought to be. The article tries toelaborate some aspects which might be fruitfuland clarifying in the complex issues involvedin the black box of genetic counseling. (shrink)

In December 2017, Law 219/2017, ‘Provisions for informed consent and advance directives’, was approved in Italy. The law is the culmination of a year-long process and the subject of heated debate throughout Italian society. Contentious issues are addressed in the law. What emerges clearly are concepts such as quality of life, autonomy, and the right to accept or refuse any medical treatment – concepts that should be part of an optimal relationship between the patient and healthcare professionals. The law (...) maximizes the value of the patient’s time to decide. Every patient is allowed to make choices for the present as well as for the future, conceived as a continuation of the present, and to decide what comes next, based on what he/she already knows. The law identifies three distinct but converging paths towards the affirmation of a care relationship based on reciprocal trust and respect: the possibility to consent to or refuse treatment, the shared care planning, and advance directives. The fundamental point to emerge from the new Italian law is that consensus is an essential connotation of the treatment relationship. Consensus is not limited to the acceptance/rejection of medical treatment but is ongoing. It is projected into the future through shared care planning and advance directives which act as tools for self-determination and the manifestation of the beliefs and preferences of persons unable to express their will. These principles are in line with the idea of appropriate care as evaluated from two different perspectives, one of scientific adequacy and the other commensurate with the individual’s resources, fragility, values, and beliefs. Surely, however, the new law is not the end of the matter on issues such as conscientious objection, which is deeply rooted within the Italian cultural and political debate. In this regard, healthcare institutions and policymakers will be called upon to develop and implement organizational policies aimed at the management of foreseeable conscientious objection in this field. (shrink)

In this paper several reasons as to why framing issues should be of greater interest to both medical ethicists and healthcare professionals are suggested: firstly, framing can help in explaining health behaviours that can, from the medical perspective, appear perverse; secondly, framing provides a way of describing the internal structure of ethical arguments; and thirdly, an understanding of framing issues can help in identifying clinical practices, such as non-directive counselling, which may, inadvertently, be failing to meet their own stated ethical (...) aims. The effect of framing on how individuals interpret information and how healthcare choices are influenced by framing are described. Next, the role of framing in ethical discourse is discussed with specific reference to Judith Jarvis Thomson’s philosophical mind experiment about abortion and the violinist. Finally, the implications of this analysis are examined for the practice of non-directive counselling, which aims at communicating information in a neutral, value-free way and thereby protecting patient autonomy. (shrink)

In "Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?," Bayefsky and Berkman argue in favor of establishing three categorie...

In 2004, prenatal risk assessment (PRA) was implemented as a routine offer in Denmark, in order to give all pregnant women an informed choice about whether to undergo prenatal testing. PRA is a non-invasive intervention performed in the first trimester of pregnancy and measures the risk of a fetus having Down's syndrome or other chromosomal disorders. The risk figure provides the basis for action, i.e. the decision about whether or not to undergo invasive fetal testing via the maternal route (amniocentesis (...) or chorionic villus sampling), which, however, involves the risk of inducing a miscarriage. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, this paper investigates how ideals such as autonomy and non-directiveness are practised in processes of decision-making. We view such ideals as forming social practice rather than neutral instruments to reach a certain goal. Focusing on one couple's trajectory through the clinical practices of PRA and the process through which a decision is reached, we call into question the assumption that more choice and more objective information is a source of empowerment and control. We make evident how decisions are made through a complicated process of meaning-making, which emerges through the relationship between professionals, the clinical setting and the social life of the couples. In the face of complex risk knowledge, PRA users are reluctant to make choices and seek to re-install authority in the health professionals. However, when assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the fetus. It is argued that PRA performs a form of government that works not through compulsion or persuasion but through choice. An ethic of a shared responsibility for PRA and its outcome between pregnant women and health professionals would be more in agreement with how decisions are actually made. (shrink)

The popular view of non-directive genetic counseling limits the counselor's role to providing information to clients and assisting families in making decisions in a morally neutral fashion. This view of non-directive genetic counseling is shown to be incomplete. A fuller understanding of what it means to respect autonomy shows that merely respecting client choices does not exhaust the duty. Moreover, the genetic counselor/client relationship should also be governed by the counselor's commitment to the principle of beneficience. When non-directive (...) counseling is reexamined in light of both these principles, it becomes clear that there are cases in which counselors should attempt to persuade clients to reconsider their decisions. Such attempts are consistent with non-directive counseling because, while respecting the clients' decision-making authority, they insure that clients act with full knowledge of the moral consequences of their decisions. (shrink)

Background Only a few studies have been conducted to assess physicians’ knowledge of legal standards. Nevertheless, prior research has demonstrated a dearth of medical law knowledge. Our study explored physicians’ awareness of legal provisions concerning informed consent and confidentiality, which are essential components of the physician-patient relationship of trust. -/- Methods A cross-sectional study assessed attending physicians’ legal knowledge of informed consent and confidentiality regulations. The study was conducted in nine hospitals in Dolj County, Romania. Physicians were given a questionnaire (...) with ten scenarios and instructed to select the response that best reflected their practice. We assessed the responses of physicians who claimed their practice to be entirely legal. Their legal knowledge was evaluated by comparing their answers to applicable laws. We also calculated a score for the physicians who admitted to committing a legal breach. -/- Results Of the 305 respondents, 275 declared they never committed any law violation. However, their median correct answer score was 5.35 ± 1.66 out of 10. The specialty was the strongest predictor of legal knowledge, with emergency physicians rating the lowest and non-surgical physicians scoring the highest. Physicians who worked in both private and public sectors were better knowledgeable about legal issues than those who worked exclusively in the public sector. Results indicate that physicians are aware of the patient’s right to informed consent but lack comprehensive understanding. While most physicians correctly answered simple questions, only a tiny minority identified the correct solution when confronted with ethical dilemmas. The physicians who acknowledged breaching the law, on the other hand, had a slightly higher knowledge score at 5.45 ± 2.18. -/- Conclusion Legal compliance remains relatively low due to insufficient legal awareness. Physicians display limited awareness of legal requirements governing patient autonomy, confidentiality, and access to health data. Law should be taught in all medical schools, including undergraduate programs, to increase physicians’ legal knowledge and compliance. (shrink)

Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental (...) to the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic schemas. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist. (shrink)

Informed consent bears significant relevance as a legal basis for the processing of personal data and health data in the current privacy, data protection and confidentiality legislations. The consent requirements find their basis in an ideal of personal autonomy. Yet, with the recent advent of the global pandemic and the increased use of eHealth applications in its wake, a more differentiated perspective with regards to this normative approach might soon gain momentum. This paper discusses the compatibility of a moral (...) duty to share data for the sake of the improvement of healthcare, research, and public health with autonomy in the field of data protection, privacy and medical confidentiality. It explores several ethical-theoretical justifications for a duty of data sharing, and then reflects on how existing privacy, data protection, and confidentiality legislations could obstruct such a duty. Consent, as currently defined in the General Data Protection Regulation – a key legislative framework providing rules on the processing of personal data and data concerning health – and in the recommendation of the Council of Europe on the protection of health-related data – explored here as soft-law – turns out not to be indispensable from various ethical perspectives, while the requirement of consent in the General Data Protection Regulation and the recommendation nonetheless curtails the full potential of a duty to share medical data. Also other legal grounds as possible alternatives for consent seem to constitute an impediment. (shrink)

Since 2008 I have been closely following the conceptual/performance/video work of Daniel Peltz. Gently rendered through media installation, ethnographic, and performance strategies, Peltz’s work reverently and warmly engages the inner workings of social systems, leaving elegant rips and tears in any given socio/cultural quilt. He engages readymades (of social and media constructions) and uses what are identified as interruptionist/interventionist strategies to disrupt parts of an existing social system, thus allowing for something other to emerge. Like the stereoscope that requires two (...) identical images to create an illusion of a three-dimensional image, Peltz sometimes visualizes two separate elements to create an object or moment that requires space and depth to focus on its varied layers. They say your brain has to process and make meaningful sense out of all that visual information before it can accept the illusion. I say your brain has to do a similar thing when looking and seeing the divine, magical, and faithful (social) art making of Daniel Peltz. Daniel Peltz is Associate Professor of Film/Animation/Video at RISD. He divides his time between Rhode Island and Sweden and is currently at work on an exhibition at Botkyrka Konsthall, Stockholm opening February 2013 and a new project to be included in the IASKA: Spaced Biennial (Australia) in 2014. This interview took place on Skype and is part one of a two-part interview. Feliz Lucia Molina: Are you in Providence, RI? Daniel Peltz: I’m at my house in Providence. I’ve been back for six days teaching winter session at RISD and doing this workshop series—these investors’ drum circles with a group of wealth managers. a client of the firm, 2013, photo Shirin Adhami FLM: The wealth managers were all drumming together? DP: They were all drumming in response to the performance of their retirement portfolios. FLM: Is this part of the “Unrealized Gain/Loss” piece? DP: Yes, it’s part of a show I’m working on in Sweden. I can show you because it was just today. I’ll show you some of this. Lets see—share screen [click, click, click]. This is the room. I’ve been using the camera system that’s already installed in the conference rooms to record them. So the video is being recorded directly by the wealth management office’s tech staff. These are the people I worked with in the last workshop. This conference table is less wondrous. They’ve been learning to drum in response to their retirement portfolios. I started by bringing in my little bit of wealth for them to propose a management strategy, I came to the follow-up meeting with a counter proposal, which was this workshop. So they agreed to do this series of workshops instead of managing my wealth. FLM: Does everybody in the room manage your wealth? That’s kind of a lot of people. DP: That woman in the back there and Craig —they handle new client business. So when you come there with your wealth, they sit down with you and suggest to you how they would manage it. They’re very nice, responsible people. FLM: And where is this? DP: This is in Providence and the one I was showing you is in Waltham, where I was today. Then I’m going to Newport for the last one on Friday. So I will have done four of them. This is the group in Waltham that I just played with today. I played directly with the two groups in Providence and I’m working with an ethnomusicologist at Brown, Asha Tamarisa, who is facilitating the last two. She’s helped develop the workshop in terms of figuring out how to train a group to do this and thinking about the compositional challenges of working in response to retirement portfolio data. FLM: Screensharing helps me to figure out tiny bits here and there about the project. DP: I might even be able to play you a little of the audio I’ve also been working with a group of professional percussionists on what will become a quarterly public investors’ drum circle event. Their stuff was really nice, but I want you to hear what we sounded like in the workshops. They’ve all been recorded by the a/v system in the offices. We use a simple structure where the drummer investors interpret the sensation of gain or loss as embellishments to a base heartbeat rhythm. The group holds the heartbeat and, as each person experiences gain or loss, they embellish that rhythm. "Screensharing helps me to figure out tiny bits here and there about the project" FLM: Is the process all very spontaneous? DP: Its actually quite structured. We produce a custom stock ticker that shows the performance of their collective portfolios. In advance of the workshop each participant submits assets in their retirement portfolio. Then we make a stock ticker that shows the real-time performance of their assets so that they can respond to almost live data. FLM: Are they reading the stock ticker projected up on the screen in the room? Do people drum in correspondence to the visual live data of the performance of their assets? DP: Exactly. They’re looking at the stock ticker as opposed to each other, so it’s a slightly shifted drum circle. They’re looking at the ticker but they’re listening to each other—that’s what we’re practicing. For example, NVO—the price is 172.08 but it’s down -1.16 and as that moves across the screen, the person who’s retirement is invested in that asset starts to embellish when that arrow first appears, based on their experience of loss. They stop when it exits the screen and return to the heartbeat. You could have one ticker for each retirement portfolio, but the way the workshop is constructed is that we just isolate one asset from each person’s portfolio so that everyone in the group is represented in a single ticker. So they’re drumming and looking at the ticker, but they’re hearing each other experience gain and loss. We’ve removed direct visual engagement from the social structure of a drum circle but the oral engagement is still there. FLM: So they had their own sound interpretation of gain and loss? DP: Yeah and that part is quite spontaneous as you were saying. In some of the preparatory exercises we’ve been working to give the participants more strategies for interpreting the sensations of gain and loss. We’re trying to develop their capacity to embellish a heartbeat or base rhythm but I’m not invested in having a melodious result. I’m quite curious about what this kind of structure will result in without any desire for a particular result. FLM: For context, can you talk about the project you did a couple years ago in Bali, “Unrealized Gain/Loss” in relation to this current wealth management project? DP: The workshops I’ve been doing use a similar strategy to the other components in this project. It started in Indonesia on my sabbatical and I was really trying to understand where I was physically and where I was being on sabbatical—this kind of strange jubilee structure where every seventh year you’re supposed to renew your self. And it was around the time of the global financial crisis. I was on sabbatical for the global financial crisis. I remember watching my father, in particular, respond to the financial crisis by monitoring his retirement portfolio and trying to make sense of it. I realized on a visit to their home that he checked his retirement portfolio every single day and I was really struck by that because in some way our parents are mysteries to us as children, especially their moods. We know how important their moods are but we don’t know what governs them. And somehow it was like I’d figured it out, it’s the performance of the DOW! So I think there was something in that. Then I was in Indonesia and I had been drawn there by an interest in their highly ritualized Hindu culture, where so much of life is driven by a ceremonial calendar. I was interested in Bali as this predominantly Hindu pocket within a predominantly Islamic country and life there being organized by this ritual calendar functioning as a kind of resistance to the dominant global religion of free-market capitalism. So I started to explore that correlation between the ways in which this culture that I was living in was sort of “living for the afterlife” and this idea within certain segments of American society of “living for the afterwork life”. The idea that your wellbeing in the “afterwork life” is tied to forces that are unseen and largely beyond your control has strong similarities to many religious understandings of the universe. So I started to explore that and the crafts and materials that were around me were primarily Batik and percussion. Percussion is a huge part of daily life in Bali. These gamelan troupes were everywhere. And I also happened to be there for Nyepi, the day of silence, which is preceded by a very elaborate procession and construction of demonic statues. These were the things that were around me and I started studying Batik with one of the Batik artists there and also started a conversation with two master Batik artists, one who is American and her Indonesian husband. I developed these patterns that were based on symbols from the performance of my retirement portfolio and worked with the batik artists to produce two sarongs. d. peltz - 2012 In producing the designs, I treated the performance of my retirement portfolio since my arrival at RISD [7 years] as a significant interval and then I looked at the ways in which decisions are made within retirement portfolios as having an extension outwards from the individual assets that underlie the retirement portfolio, which are kind of like the base elements of the retirement world. Then there’s the allocation of your assets, which is a global way of understanding an individual according to typologies, which are often referred to in terms of risk—this notion of a ‘risk profile’. What type of ‘person’ you are is determined by your attitude towards risk, or potentiality, and I found that to be a really fascinating way of understanding the universe. I remember looking at the tabs in my retirement portfolio and finding this one for viewing ‘Unrealized Gain/Loss’ and that’s often how I work—is just going through the Cambridge Parking Code, for example, and finding this section of the code that was called ‘Crossing Non-Signalized Locations’ and just feeling “I can’t do any better than that,” you know? That’s what I was talking about in terms of ready-mades that exist in the social sphere. So I found that tab, actually, a long time ago, and I pulled it out of a journal when I was there [in Bali] working on these pieces and I wound up making these two sarongs and later on a series of porcelain vessels for holding one’s unrealized gains and losses. At the time, I knew that I wanted a performance to come out of them, but I wasn’t sure what it was. I was inspired very much by this sort of thing: Pulls out a TIAA-CREF brochure with a man in a suit seated at a table. This guy is probably an actor, and [the brochure] says “TIAA-Cref announces “Individual counseling sessions at the Rhode Island School of Design. Individual counseling sessions at no additional cost to you. You can discuss your personal financial situation with an experienced TIAA consultant on a confidential basis. We are available to help you discuss how to achieve your financial goals by investing in financial solutions such as mutual funds, brokerage, life insurance, and annuities...etc....What retirement benefits best fits your situation?” Often I encounter this and I think O.K., this is one way to prepare for the after-work life and it seems inadequate to me. But, I also find it really inspiring. I really like the visual language of it. I kind of want to be that man. I’d like to see if I could maybe buy his clothes. FLM: What it is about the man on the brochure that interests you? DP: He’s offering personalized objective advice and a detailed evaluation of everything you need to know and do. Who wouldn’t want that? But he’s also something of a contemporary priest or priestess, mediating between the unseen all-powerful universe of global capitalism and the common worker. So I started off developing Unrealized Gain/Loss directly from the charts that represent the performance of my retirement portfolio. Then I came home and I wanted to use those. I had this word in my journal “unrealized gain/loss vessel.” I had this notion of vessels that would contain unrealized gains and losses. That felt really important to me that they would have somewhere to go. I had been thinking a lot about altars and making offerings—that somehow this really fickle, massive, difficult-to-comprehend-universe of the financial world—that somehow it might be nice if you could making an offering to it. [In Bali] they made such beautiful elaborate offerings. So I studied offering making as well with one of the women there and she taught me some of the standard forms created by folding leaves and the significance of the floral arrangements. I started working in clay and then moved to porcelain and I made these unrealized gain/loss vessels. I made a few of them, they have holes on either side that you can’t get your fingers in. But something can go in there and something can go out of there. It’s a nice size for putting on an altar. Then I got this commission from Artists in Context who was interested in my doing something for this project “Artists Perspectives for the Nation” project. I proposed initiating these investors’ drum circles as a new public performance form. I’m interested in bringing together those two symbols—the symbol of the djembe and the drum circle. unrealized gain/loss vessel - d.peltz - 2012 FLM: I can imagine the public digital stock ticker performing like a soft fleeting stream of information, a kind of (meaningless) illusory comfort blanket. DP: In some way you have to understand its relevance outside of the obvious, right? Because the obvious is illogical. Nobody is actually using that data to day trade, for example. People aren’t sitting there with their computers watching the market data in Times Square or setting up an outdoor office and being like “OK it’s up 3 points or it’s up 1.56, trade! Ok now buy, Ok now sell!” That would be a kind of a nice performance, actually. But actual day traders would want more up to date data than that. To understand what that data is doing is really important. And that’s something I’ve realized—that I’m interested in a particular kind of data visualization, which is not about what data can tell people, but what data can tell people who are visualizing it. For example, in the Cambridge Project “Crossing Non-Signalized Locations” I was interested in the 10,000 excuses archive of data recording five years worth of excuses for why people thought they shouldn’t have received their parking ticket. I was not interested in making that excuse wall so that the public could see and understand this data. Inevitably the data will be seen by others but I was really interested in what the action of visualizing the data told those who were visualizing it. The parking attendants themselves were writing those excuses on the wall—I was interested in what that kind action of writing the excuses on the wall told them about the data. Similarly, I’m interested in designing a way to allow people to pass this data from the unseen universe of the market, through their own bodies, which happens through the merging of the drum and the stock ticker. I’m interested in those two also as symbols; the drum as this symbol of the earth, the body and a pagan counterculture, and the stock ticker referring to the ethereal world of global markets—bringing those two together and making them dependent. I’m often drawn to conceptual propositions that I become invested in testing in a sincere way—at first they often they sound humorous to others, but I have to remember that there is humor in them. I don’t sit around and laugh about these things. I stop finding them funny at all. I’m interested in the proposition that we could know something about the after-work life by drumming in response to our retirement portfolio. So then I become really interested in how to craft that into a viable performance form for myself and others. FLM: The aspect of using sound in “Unrealized Gain/Loss” as a way of embodying the information to the asset holder is really intriguing—using sound as a means of embodying the asset data. Was sound a medium that made sense to use immediately or were you considering other means of attempting to embody it? DP: Well I do use other mediums within the project like textile, ceramic, and batik patterns. I was first drawn to the history of Batik patterns as a socio-economic stratification system and the vessels as a way of embodying or manifesting this data of unrealized gain and loss. My first approach was to work with meditation actually—a meditation workshop with my colleagues. I was going to offer this “Unrealized Gain/Loss” workshop where you would explore the sensations of gain and loss by adapting the way yogi-nidra brings you into contact with your physical surroundings and stretches your perception. FLM: At Naropa University there are/were business & compassion workshops—a sort of mash-up of business and compassion and how compassion could be incorporated into a business model. This process and engagement of “embodying data” also has to do with “Participatory Democracy and the Future of Karaoke” you created at the DNC in Denver in 2008. DP: That kind of appropriation and instrumentalization of spiritual practice could be disturbing and thus compelling as a strategy. For various reasons, I’ve come to be drawn to both the form of a quarterly public performance and the established performance form of a drum circle. Its something I’ve seen myself do before, that is to mess up a really good functional social system like a drum circle or karaoke. I remember I was developing language for the karaoke project and started calling it “Participatory Democracy and the Future of Karaoke” and one of my assistants on the project, who’s an incredible artist, said, “but don’t you think the future of karaoke is guitar hero?” and I realized that maybe he thought I was trying to improve the form. I’m just trying to get people to have this shifted embodied experience, I need to craft the performance context so that they can do that. In the case of the karaoke project, for example, what did I need in order to be able to do this [a person to stand up in front of a bar and deliver a karaoke speech]? I realized that the body is very vulnerable so I built a podium so that the speaker can feel secure enough to do this, otherwise you couldn’t get to this state achieved by passing these speeches through the body. Then I was, like, well you need to be able to practice the lyrics because you don’t know all the “songs” by heart, which became an insert to the massive track books carried by most karaoke VJs. And then sometimes the crowd in the bar isn’t there with me, so I needed to extract the voice of the crowd cheering from the original venue and I needed the local audience to cheer if they wanted to. I’m interested in both where the form succeeds and fails. In particular, one of the most interesting things is this auditory gap between the space where you are, the reduced scale of applause in your own little bar, and this grand scale of applause at the convention center where the speech was originally delivered. FLM: How did the concept of “Participatory Democracy Karaoke” come about and why did you use karaoke as a means of engaging what was happening at the DNC in 2008? DP: I was looking at a lot of different readymade media infrastructures within the city at the time. I was interested in the emergency broadcast systems and I developed a proposal to repurpose that system and karaoke became an important symbol because it was this populist form that was already engaged in exploring the sensation of celebrity but also visualizing the gap between ourselves and those with more power and influence. So it had this readymade capacity to play with power and celebrity and I felt like the Obama presidential campaign, the first one in particular, had some very curious overlaps with this culture of celebrity. Obama of course rose to power partly based on his oratory abilities and I was interested in how karaoke as a vehicle was so adept at offering people all that was left of authentic expression in a political speech. Managing a politician and constructing their identity is such a developed practice that it becomes, kind of automatically, a metaphor for the way that our own identities are constructed. Of course the Obama campaign was very hip and savvy and deploying this notion of grassroots. It was really pioneering in its use of social media and this deployment of notions of populism. I was interested at that time in the capacity of karaoke to track speech patterns, precise tempos of anyone’s delivery, and that to me was a way of thinking about what might be left of the authentic self. I was interested in karaoke’s capacity to extract that authentic component and offer it to others. So not just to stand up and be them, but to [literally] pass their speech patterns through your own body. A long time ago, it started to strike me as odd that one would make media at all. It struck me as a kind of un-contemporary way of going about making art in an age of media overflow. That logic extended into my thinking on delivery devices and installation as well. Why would one buy a screen or even set one up when there are so many out there? And the way in which these media displays function in karaoke bars and bars in general is very interesting to me. I’m drawn to this passive consumption of media where your primary social interaction is with the bartender or a few other individuals but these screens are around you and your attention is shifting back and forth between these spaces. So much political rhetoric is spoken to a half-listening audience. I was interested in what was happening in the slippage and that karaoke was a kind of slippage amplifier. So if you put people in a bar and they are delivering a Kucinich speech and Kucinich comes up on a screen then your getting a sound bite of Kucinich and an image of Kucinich and your friend is talking to you— FLM: A kind of magic takes place in that incongruency between sound and image and the karaoke participant who’s relaying the speech-text at the same time. DP: Exactly and there’s some kind of truth in that experience of reality. FLM: Yeah, there’s something uncanny about seeing the body close-up like that as though it can’t lie to you in that moment or context. It’s a weird moment of luminous clarity. The work you’ve done and all of what you’re saying about karaoke is so very interesting to me. Growing up, my dad and uncles sang karaoke a lot (and still do) and being first-generation Filipino American is a different cultural subtext entirely. I’m also seeing it from the position of witnessing family members who are carriers of these stories and songs. And seeing them cherish these Tony Bennett, Frank Sinatra, Elvis Presley songs so much, I also see how their bodies are literal vessels of popular music that signifies something greater—it signifies their cultural and socioeconomic place in the world. The way that they cherish these American 1950s and 1960s pop songs is similar to having a certain kind of reverence for their spiritual faith or Catholicism. It’s a similar kind of care, focus, and attention exerted in karaoke and Catholicism—that these two structures and systems give something to focus on. Setsuko, Seiji and Hitoshi in Obama, Japan as Obama in Indiana — d. peltz — 2008 DP: Sure there something about the relationship we have to our candidate or the way we go about choosing a candidate, which is very similar to a deity or idol. I learned a lot about karaoke culture through this project. I’d never done karaoke. I’d never been interested in it as a form and then I travelled to Japan as part of the project when I made “Setsuko, Seiji and Hitoshi in Obama, Japan as Barack Obama in Indiana” and it was quite fascinating because my image of karaoke had always been this very public forum in a karaoke bar and then I discovered there’s this whole other world of karaoke where people even go on their own, they go and rent a room or cubicle and sing, or they go on a date—just the two of them go and sit in a room and do karaoke together. FLM: I’m interested in issues that take place within or as a result of specific karaoke culture(s). In the Philippines within the last several years there’s been occurring the “My Way Killings” phenomenon. Apparently baklas or gay men are employed by karaoke establishments to help “smooth over conflicts over karaoke singing”—these social forms of conduct, or lack thereof that arise out of the infrastructures of this social sport. In this one rural part of the Philippines there’s a village karaoke machine that the whole village shares—the Aeta indigenous people have an appointed “keeper” of the karaoke machine. I also see karaoke as a proxy to the confessional box in Catholicism where one goes to pour out their sins (minus the penance and redemption). The karaoke machine enables one to literally sing out whatever’s going on internally, but through highly saturated popular song lyrics. While karaoke is a public and social sport, it can also be a private one. Karaoke is a means of communion with each other. DP: Right, this preference for this kind of mediated communication. In Japan I was trying to organize people to work on this project and I was talking about throwing a party and they were like, well, we have to rent a karaoke machine because what else are we going to do? And I think its kind of serving that function of surrogacy—emotional surrogacy. FLM: And karaoke tools can be read as ritual tools—the magic mic that holds everything. There’s got to be some overlap at some point—between religious ceremony and devotion to the karaoke machine. DP: The way I designed the piece was so that it could slip right on top of the ready-made karaoke infrastructure. There was a flat-packed podium and it was made of a single sheet of plywood with no fasteners that slotted into itself. Those were sent out to a network of karaoke bars that I invited to become “karaoke convention centers.” The local VJs downloaded our custom-made, speech-extracted tracks that were designed to play on their existing equipment. In this sense the piece is a permanent installation. If you go to Denver today, some of the VJs still have the tracks in their library of offerings, the Ramones and Romney. It was this notion of re-purposing readymade infrastructure to create a distributable populist form. Obama was coming and the convention was in the Pepsi Center and 30,000 people were coming including 10,000 journalists. The impetus behind the larger art project that commissioned international artists to make works in Denver, was that local people weren’t going to have much access to this convention. It was like an invasion, the city was being descended upon, but if you lived a block away from the site, you had the same access as people in Zimbabwe&mash;30 second media bits excerpted from the speeches. So it seemed to me that the fundamental gesture was how do I take that signal, which was travelling out of the convention center, and create a local interruption? FLM: Is that what you mean by ‘intervention’? The term is frequently used to help describe your work. DP: It depends on the day. Around that karaoke project I had a conversation with Krzysztof Wodiczko and he was proposing that maybe rather than intervention, we should consider the word interruption. Because intervention is kind of an overused term in the field of art and it has militaristic and therapeutic associations outside of the art context. Fundamentally, the idea of intervening speaks to the readymade social world as your primary material. So it’s basically suggesting a kind of subtractive process, which gets back to this question: what is the role of the contemporary media artist in a world that’s so saturated with media? You can’t work additively in a saturated field. If you want to make a visible mark you have to work subtractively. That’s what intervention is about to me, just another way of saying “to work subtractively.” FLM: So the interventions or interruptions aren’t necessarily adding or subtracting, but are they putting orange cones there? What are they doing exactly? DP: I think you’re right about that, they’re not really subtracting. They’re adding to the scope of possibility. I’ve been thinking (with this exhibition I’m mounting next month) about the work as explorations and expansions of social possibility. Maybe it’s more insertion. I started calling the pieces ‘insertions’ that I was making in Rejmyre—a small town in Sweden where I’ve been working for six years now. My favorite site to install there is the tourist bureau. I started calling the video pieces that I made for the tourist bureau, video insertions. This idea that you’re inserting something into the readymade media infrastructure of the world resonates with me. Insertion leverages a context, creating a possibility that the inserted object might be naturalized in the process — that someone can encounter my video in Rejmyre as tourist information. And then all of a sudden tourist information can include some American guy prostrating through town and it can include really bad relationship advice. Maybe insertion is a better word. tourist information – d. peltz 2009-present  . (shrink)

Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be (...) openly stated in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals. However, with medicine becoming a data-intense enterprise, informed consent and medical confidentiality, as mechanisms of control, are put under pressure. In this paper we explore emerging models of informational control in data-intense healthcare and clinical research, which can compensate for the limitations of currently available instruments. More specifically, we discuss three approaches that hold promise in increasing individual control: the emergence of data portability rights as means to control data access, new mechanisms of informed consent as tools to control data use, and finally, new participatory governance schemes that allow individuals to control their data through direct involvement in data governance. We conclude by suggesting that, despite the impression that biomedical big data diminish individual control, the synergistic effect of new data management models can in fact improve it. (shrink)

Neurodevices that collect neural (or brain activity) data have been characterised as having the ability to register the inner workings of human mentality. There are concerns that the proliferation of such devices in the consumer-directed realm may result in the mass processing and commercialisation of neural data (as has been the case with social media data) and even threaten the mental privacy of individuals. To prevent this, some argue that all raw neural data should be conceptualised and regulated as “medical (...) data” even if it is collected from consumer-directed devices in obviously non-clinical settings. In this paper, we argue that without a clearer formulation of what does and does not count as medical data, this approach might also uncritically enlarge the scope for medical influence and an unwarranted medicalisation of everyday aspects of mental life. Indeed, if we were to accept the position that all neural data is medical data because it offers insights into personally sensitive information (such a person’s thoughts, emotions, or intentions) then this could even unnecessarily expand the boundaries of medical data to other forms of data that otherwise seem to be non-clinical. If all brain data (neural activity data) is considered to be medical data even when collected from consumer-directed devices then we might unintentionally reduce meaningful distinctions between what is and what is not rightfully in the purview of medicine. (shrink)

A simplified relationship between setting of a norm and an individual’s compliance can be characterized by three distinct stages: norm comprehension and processing; the deliberate compliance decision of the individual; and non-deliberate decision-making. On each stage, there is insight from social sciences, experimental psychology and behavioural law and economics making different predictions about individual compliance behaviour. We study the implications of extra-juridical insight as well as normative constitutional requirements on the optimal design of norms. We find considerable variance in norm (...) designs for improving compliance depending on the respective empirical insight. Regarding norm comprehension, there is ambiguity in the relationship between individual’s limited cognitive processing capacity and the constitutional law imperative for norm specificity. The stage of deliberate decision-making relates to the rationality model of human behaviour allowing for economic, reciprocal, communicative human dispositions, each of which requires different law designs to induce individual’s compliance. Homo oeconomicus responds to law design using costs as steering tool. Homo reciprocans can be directed through decentralized self-regulation, governance of small political units and belief management. And compliance of homo communicans can be induced when procedures are perceived as being fair and inclusive. Finally, the existence of non-deliberate decision-making may justify paternalistic legal measures. The findings may inform lawmakers in how to design and draft laws to optimize norm compliance. (shrink)

Recruiting patients into clinical research is essential for the advancement of medical knowledge. However, when the physician undertaking the care of the patient is also responsible for recruitment into clinical research, a situation arises of an inter-role breach of confidentiality which is distinguishable from other conflicts of interest. Such discord arises as the physician utilizes confidential information obtained within the therapeutic relationship beyond its primary objective, and safeguards ought to be observed in order to avert this important, and generally (...) overlooked, problem. The moral worth of the pledge of confidentiality is based not on its innate value but on its being a promise on which subsequent interactions and disclosures are founded. Within the patient-doctor interaction, confidentiality is an important facet of the promised fidelity and, as such, a loose interpretation of the notion threatens the essence of the relationship, and any violation thereof requires compelling moral justification. To avoid conflict, patients' confidential information ought not be used for the purpose of recruitment, which needs to be undertaken through general education and non-directed appeals, and a preliminary consent to be approached for research should be obtained from the patient prior to her being identified as a suitable research subject. Securing this prior consent would avoid one source of potential, albeit unintended, coercion. (shrink)

Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion (...) by most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better. (shrink)

This study examined the impact of sex, age, and level of education on the perception of various business practices by managers of a large non-profit organization. Female managers perceived the acceptance of gifts and favors in exchange for preferential treatment significantly more unethical than male managers. Older managers (40 plus) perceived five practices significantly more unethical than younger managers (giving gifts/favors in exchange for preferential treatment, divulging confidential information, concealing ones error, falsifying reports, and calling in sick to take (...) a day off). The practice of padding expense account by over 10% was reported to be significantly more unethical by managers with a graduate degree. (shrink)

Background:There is little research comparing clinicians’ and managers’ views on priority settings in the healthcare services. During research on two different qualitative research projects on healthcare prioritisations, we found a striking difference on how hospital executive managers and clinical healthcare professionals talked about and understood prioritisations.Aim:The purpose of this study is to explore how healthcare professionals in mental healthcare and somatic medicine prioritise their care, to compare different ways of setting priorities among managers and clinicians and to explore how moral (...) dilemmas are balanced and reconciled.Research design and participants:We conducted qualitative observations, interviews and focus groups with medical doctors, nurses and other clinical members of the interdisciplinary team in both somatic medical and mental health wards in hospitals in Norway. The interviews were recorded and transcribed verbatim.Ethical considerations:Basic ethical principles for research ethics were followed. The respondents signed an informed consent for participation. They were assured anonymity and confidentiality. The studies were approved by relevant ethics committees in line with the Helsinki Convention.Findings:Our findings showed a widening gap between the views of clinicians on one hand and managers on the other. Clinicians experienced a threat to their autonomy, to their professional ideals and to their desire to perform their job in a professional way. Prioritisations were a cause of constant concern and problematic decisions. Even though several managers understood and empathised with the clinicians, the ideals of patient flow and keeping budgets balanced were perceived as more important.Discussion:We discuss our findings in light of the moral challenges of patient-centred individual healthcare versus demands of distributive justice from healthcare management.Conclusion:The clinicians’ ideals of autonomy and good medical and nursing care for the individual patients were perceived as endangered. (shrink)

Despite the benefits biobanks are expected to bring, there have recently been concerns raised that the public and private non-profit biobanks still prevailing in Europe often fail to reach their initial objectives due to a variety of reasons, including a shortage of funding and insufficient utilization of collections. The necessity to find new ways to manage biobanks has been clearly recognized and one way to do this is to follow the success of some commercial direct-to-consumer genetic testing companies in the (...) biobanking field. This paper is focused on a double role the return of individual health related findings detected through the biobanking activities can play in the management of biobanks. These findings can be seen as an untapped opportunity to offer health related information to biobank participants. At the same time, the IHRF policy can also serve as an additional tool that can improve biobanking governance. This paper aims to consider diverse IHRF approaches as well as to explore some key ethical concerns related to them. In particular, it reveals how different accounts of personal autonomy shape consent policies related to IHRF and emphasizes ethical controversies related to the commercial DTC GT initiatives as well as some non-profit biobanks. (shrink)

As health care costs continue to escalate, cost control measures will likely become unavoidable and painful. One approach is to engage external forces to allocate resources - for example, through managed care or outright rationing. Another approach is to engage consumers to make their own allocation decisions, through "self-rationing," wherein they are given greater awareness, control, and hence responsibility for their health care spending. Steadily gaining popularity in this context is the concept of "consumer directed health care" (CDHC), which is (...) envisioned to both control cost and enhance choice, by combining financial incentives with information to help consumers make more informed health care decisions and to appreciate the economic trade-offs of those decisions. While CDHC is gaining attention in the popular press, business publications, and academic journals, it is not without controversy about its relative merits and demerits. CDHC raises questions regarding the ethical limits of consumer responsibility for their choices. While the emphasis on consumer choice implies that autonomy is the ruling ethical principle in CDHC, it must be tempered by justice and beneficence. Justice must temper autonomy to protect disadvantaged populations from further widening disparities in health care access and outcomes that could arise from health care reform efforts. Beneficence must temper autonomy to protect consumers from unintended consequences of uninformed decisions. Thoughtful paternalism suggests that CDHC plans offer choices that are comprehensible to lay consumers, limited in their range of options, and carefully structured with default rules that minimize potential error costs. (shrink)

This chapter provides a high-level overview of key ethical issues raised by the use of surveillance technologies, such as digital contact tracing, disease surveillance, and vaccine passports, to combat the COVID-19 pandemic. To some extent, these issues are entirely familiar. I argue that they raise old questions in new form and with new urgency, at the intersection of information ethics, research ethics, and public health. Whenever we deal with data-driven technologies, we have to ask how they fare in relation (...) to important values like privacy, fairness, transparency, and accountability—values emphasized by information ethics scholars. Likewise, when such technologies put individuals at risk in order to drive scientific research and knowledge construction, we have to ask how they implicate values such as autonomy, beneficence and non-maleficence, and justice—values central to research ethics. And as researchers focusing on health information have long argued, when the data collected by these technologies pertain to individuals and public health, these ethical issues take on a special cast. -/- It is also true, however, that the pandemic has placed these questions in a new and revealing light. I highlight three insights from information ethics and research ethics that can help us navigate this difficult terrain. First, the value of privacy is instrumental, not absolute—there is nothing wrong with asking how to balance privacy against other important values. Second, privacy has both individual and social importance. Weighing privacy, on one hand, and public health, on the other, is not, therefore, a contest between individual and collective interests. Rather, it is an attempt to balance disparate public goods. Third, we ought to put these kinds of ethical decisions in the hands of third parties, rather than leaving them up to those who directly stand to benefit from them. In the case of pandemic surveillance technologies, this should mean more public, democratic oversight. (shrink)

BackgroundDeciding whether to resuscitate extremely preterm infants (EPIs) is clinically and ethically problematic. The aim of the study was to understand neonatologists’ clinical–ethical decision-making for resuscitation of EPIs.MethodsWe conducted a qualitative study in Belgium, following a constructivist account of the Grounded Theory. We conducted 20 in-depth, face-to-face, semi-structured interviews with neonatologists. Data analysis followed the qualitative analysis guide of Leuven.ResultsThe main principles guiding participants’ decision-making were EPIs’ best interest and respect for parents’ autonomy. Participants agreed that justice as resource (...) allocation should not be considered in resuscitation decision-making. The main ethical challenge for participants was dealing with the conflict between EPIs’ best interest and respect for parents’ autonomy. This conflict was most prominent when parents and clinicians disagreed about births within the gray zone (24–25 weeks). Participants’ coping strategies included setting limits on extent of EPI care provided and rigidly following established guidelines. However, these strategies were not always feasible or successful. Although rare, these situations often led to long-lasting moral distress.ConclusionsParticipants’ clinical–ethical reasoning for resuscitation of EPIs can be mainly characterized as an attempt to balance EPIs’ best interest and respect for parents’ autonomy. This approach could explain why neonatologists considered conflicts between these principles as their main ethical challenge and why lack of resolution increases the risk of moral distress. Therefore, more research is needed to better understand moral distress in EPI resuscitation decisions.Clinical Trial Registration: The study received ethical approval from the ethics committee of UZ/ku Leuven (S62867). Confidentiality of personal information and anonymity was guaranteed in accordance with the General Data Protection Regulation of 25 May 2018. (shrink)

Parsa-Parsi et al systematically discuss and elucidate contentious and non-controversial ethical issues that emerged during the ICoME (International Code of Medical Ethics) revision process and the consensus they achieved. The ethical issues discussed include the physician’s duty to act in the best interests of patients and to ensure they are protected from the unjustifiable risk of harm, respect for patient autonomy and the duties of physicians during emergencies, among others. This paper examines paragraph 26, which requires doctors to provide (...) only medically justified remote treatment, ensure patients offer informed consent and adequately protect their confidentiality.1 At the peak of the COVID-19 pandemic, many countries in Europe and America implemented remote-by-default healthcare policies. At that time, the policy aimed to ensure that patients enjoyed continued access to care while protecting healthcare professionals’ health and well-being. After the COVID-19 pandemic, this policy remained in place. Regardless of the nature of their ailment, patients have consistently preferred in-person care out of concern that their health issues might not be accurately diagnosed and that they may not receive quality care …. (shrink)

Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion (...) by most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better. (shrink)

The primary theme of this paper is the normative case against ownership of one's genetic information along with the source of that information (usually human tissues samples). The argument presented here against such “upstream” property rights is based primarily on utilitarian grounds. This issue has new salience thanks to the Human Genome Project and “bio-prospecting” initiatives based on the aggregation of genetic information, such as the one being managed by deCODE Genetics in Iceland. The rationale for ownership (...) is twofold: ownership will protect the basic human rights of privacy and autonomy and it will enable the data subjects to share in the tangible benefits of the genetic research. Proponents of this viewpoint often cite the principle of genetic exceptionalism, which asserts that genetic information needs a higher level of protection than other kinds of personal information such as financial data. We argue, however, that the recognition of such ownership rights would lead to inefficiency along with the disutility of genetic discoveries. Biomedical research will be hampered if property rights in genes and genetic material are too extensive. We contend that other mechanisms such as informed consent and strict confidentiality rules can accomplish the same result as a property right without the liabilities of an exclusive entitlement. (shrink)

Direct-to-consumer genetic testing has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople’s awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups with German laypeople to explore their perceptions of and attitudes towards commercial genetic testing and its ethical implications. Participants were critical towards DTC GT. Criticism (...) was directed at health-related, predictive testing, while lifestyle tests were accepted and even welcomed to some extent. Participants expressed strong reservations regarding commercial provision of genetic diagnostics and expressed a lack of trust in respective companies. They preferred non-commercial distribution within the public healthcare system. Participants also expressed high expectations of physicians’ abilities to interpret information obtained via DTC GT companies and provide counseling. Legal restrictions on commercial distribution of genetic tests were opposed, with participants arguing that it should be available to consumers. DTC GT companies are not perceived as trustworthy when compared to the public healthcare system and its professional ethical standards and practices. Laypeople rated general consumer autonomy higher than their own concerns, thus recommending against strong legal regulation. We conclude that medicine’s trustworthiness may be negatively affected if commercial provision is not visibly opposed by the medical professions, while DTC GT companies may gain in trustworthiness if they adapt to standards and practices upheld in medicine. (shrink)

Why has autonomy been a leading idea in philosophical writing on bioethics, and why has trust been marginal? In this important book, Onora O'Neill suggests that the conceptions of individual autonomy so widely relied on in bioethics are philosophically and ethically inadequate, and that they undermine rather than support relations of trust. She shows how Kant's non-individualistic view of autonomy provides a stronger basis for an approach to medicine, science and biotechnology, and does not marginalize untrustworthiness, while (...) also explaining why trustworthy individuals and institutions are often undeservingly mistrusted. Her arguments are illustrated with issues raised by practices such as the use of genetic information by the police or insurers, research using human tissues, uses of new reproductive technologies, and media practices for reporting on medicine, science and technology. Autonomy and Trust in Bioethics will appeal to a wide range of readers in ethics, bioethics and related disciplines. (shrink)

Many people who have reached the age of majority still qualify as financial dependents of their parents, and may be registered as dependents on their parents’ medical schemes. This poses a practical conundrum, because major persons enjoy complete autonomy over their bodies to choose healthcare services as they please, including informational determination. However, their sensitive health information may end up being disclosed in the accounts rendered to their parents, as main members of medical schemes, thereby breaching their informational (...) privacy, medical confidentiality and possibly also damaging personal relationships. On the other hand, medical schemes must ensure that they strictly manage the business of their hospitalisation to ensure that they can adhere to their contractual and legal medical insurance obligations. Both major but financially dependent patients and medical schemes have good legal grounds to defend their respective positions. In this article, we will analyse and clarify the applicable legal and ethical grounds by considering medical confidentiality, the Protection of Personal Information Act, the Consumer Protection Act and the Medical Schemes Act and rules. We shall conclude with recommendations to accommodate the interests of both parties. (shrink)

The participation of vulnerable patients in clinical research poses apparent ethical dilemmas. Depending on the nature of the vulnerability, their participation may challenge the ethical principles of autonomy, non-maleficence, or justice. On the other hand, non-participation may preclude the building of a knowledge base that is a prerequisite for defining the optimal clinical management of vulnerable patients. Such clinical uncertainty may also incur substantial economic costs. We present the participation of pre-menopausal women with atrial fibrillation in trials of (...) novel oral anticoagulant drugs as a case study. Due to their non-participation in pivotal trials, it is uncertain whether for them, the risks that are associated with these drugs are outweighed by the advantages compared with conventional treatment. We addressed the question whether research of this new class of drugs in this subgroup would be appropriate from both, an ethical as well an economic perspective. We used the method of specifying norms as a wider framework to resolve the apparent ethical dilemma, while incorporating the question whether research of oral anticoagulants in premenopausal women with atrial fibrillation can be justified on economic grounds. For the latter, the results of a value-of-information analysis were used. Further clinical research on NOACs in premenopausal women with atrial fibrillation can be justified on both, ethical and economic grounds. Addressing apparent ethical dilemmas by invoking a method such as specifying norms can improve the quality of public practical reasoning. As such, the method should also prove valuable to committees that have formally been granted the authority to review trial protocols and proposals for scientific research. (shrink)

'Brainjacking’ refers to the exercise of unauthorized control of another’s electronic brain implant. Whilst the possibility of hacking a Brain–Computer Interface (BCI) has already been proven in both experimental and real-life settings, there is reason to believe that it will soon be possible to interfere with the software settings of the Implanted Pulse Generators (IPGs) that play a central role in Deep Brain Stimulation (DBS) systems. Whilst brainjacking raises ethical concerns pertaining to privacy and physical or psychological harm, we claim (...) that the possibility of brainjacking DBS raises particularly profound concerns about individual autonomy, since the possibility of hacking such devices raises the prospect of third parties exerting influence over the neural circuits underpinning the subject’s cognitive, emotional and motivational states. However, although it seems natural to assume that brainjacking represents a profound threat to individual autonomy, we suggest that the implications of brainjacking for individual autonomy are complicated by the fact that technologies targeted by brainjacking often serve to enhance certain aspects of the user’s autonomy. The difficulty of ascertaining the implications of brainjacking DBS for individual autonomy is exacerbated by the varied understandings of autonomy in the neuroethical and philosophical literature. In this paper, we seek to bring some conceptual clarity to this area by mapping out some of the prominent views concerning the different dimension of autonomous agency, and the implications of brainjacking DBS for each dimension. Drawing on three hypothetical case studies, we show that there could plausibly be some circumstances in which brainjacking could potentially be carried out in ways that could serve to enhance certain dimensions of the target’s autonomy. Our analysis raises further questions about the power, scope, and necessity of obtaining prior consent in seeking to protect patient autonomy when directly interfering with their neural states, in particular in the context of self-regulating closed-loop stimulation devices. (shrink)

Owing to the adverse impact of the COVID-19 pandemic on world economies, it is expected that information flows between commodities and uncertainties have been transformed. Accordingly, the resulting twisted risk among commodities and related uncertainties is presumed to rise during stressed market conditions. Therefore, investors feel pressured to find safe haven investments during the pandemic. For this reason, we model a mixture of asymmetric and non-linear bi-directional causality between global commodities and uncertainties at different frequencies through the information (...) flow theory. Consequently, we utilise the complete ensemble empirical mode decomposition with adaptive noise and the Rényi effective transfer entropy techniques to establish the dynamic flow of information. The intrinsic mode functions from the CEEMDAN are carefully extracted into multi-frequencies through cluster analysis to reconstruct the series into high, medium, and low frequencies in addition to the residue. We utilise daily data from December 31st, 2019, to March 31st, 2021, to provide insights into the COVID-19 pandemic. The correlation coefficients and variances demonstrate that the high frequency which measures the short-term dynamics is the dominant frequency, suggesting short-lived market fluctuations relative to real economic growth for institutional investors. Moreover, outcomes from the multi-frequency entropy indicate a negative bi-directional causality of information flow between global commodities and uncertainties, especially in the long term. Generally, the findings present pertinent inferences for portfolio diversification, policy decisions, and risk management schemes for global commodities and markets volatilities. We, therefore, advocate that market volatilities act as effective hedges for global commodities, and they clearly act as balancing assets rather than substitutes in the long-term dynamics of the COVID-19 pandemic. Investors who delayed in investing within financial markets of commodities and market volatilities are likely to minimise their portfolio risks. (shrink)

Millions of people undergo displacement in the world. Internally displaced people (IDP) are especially vulnerable as they are not protected by special legislation in contrast to other migrants. Research conducted among IDPs must be correspondingly sensitive in dealing with ethical issues that may arise. Muslim IDPs in Puttalam district in the North-Western province of Sri Lanka were initially displaced from Northern Sri Lanka due to the conflict in 1991. In the backdrop of a study exploring the prevalence of common mental (...) disorders among the IDPs, researchers encountered various ethical challenges. These included inter-related issues of autonomy, non-maleficence, beneficence, confidentiality and informed consent, and how these were tailored in a culture-specific way to a population that has increased vulnerability. This paper analyses how these ethical issues were perceived, detected and managed by the researchers, and the role of ethics review committees in mental health research concerning IDPs. The relevance of guidelines and methodologies in the context of an atypical study population and the benefit versus risk potential of research for IDPs are also discussed. The limitations that were encountered while dealing with ethical challenges during the study are discussed. The concept of post-research ethical conduct audit is suggested to be considered as a potential step to minimize the exploitation of vulnerable populations such as IDPs in mental health research. (shrink)

BackgroundObtaining consent has become a standard way of respecting the patient’s rights and autonomy in clinical research. Ethical guidelines recommend that the child’s parent/s or authorised legal guardian provides informed consent for their child’s participation. However, obtaining informed consent in paediatric research is challenging. Parents become vulnerable because of stress related to their child’s illness. Understanding the views held by guardians and researchers about the consent process in Malawi, where there are limitations in health care access and research literacy (...) will assist in developing appropriate consent guidelines.MethodsWe conducted 20 in-depth interviews with guardians of children and research staff who had participated in paediatric clinical trial and observational studies in acute and non-acute settings in the Southern Region of Malawi. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Interviews were compared across studies and settings to identify differences and similarities in participants’ views about informed consent processes. Data analysis was facilitated by NVIVO 11 software.ResultsAll participants across study types and settings reported that they associated participating in research with therapeutic benefits. Substantial differences were noted in the decision-making process across study settings. Guardians from acute studies felt that the role of their spouses was neglected during consenting, while staff reported that they had problems obtaining consent from guardians when their partners were not present. Across all study types and settings, research staff reported that they emphasised the benefits more than the risks of the study to participants, due to pressure to recruit. Participants from non-acute settings were more likely to recall information shared during the consent process than participants in the acute setting.ConclusionThe health care context, culture and research process influenced participants’ understanding of study information across study types and settings. We advise research managers or principal investigators to define minimum requirements that would not compromise the consent process and conduct study specific training for staff. The use of one size fits all consent process may not be ideal. More guidance is needed on how these differences can be incorporated during the consent process to improve understanding and delivery of consent.Trial registration Not applicable. (shrink)

The corporatization of U.S. health care has directed cost containment efforts toward scrutinizing the clinical decisions of physicians. This stimulated a variety of new utilization management interventions, particularly in hospital and managed care settings. Recent changes in fee-for-service medicine and physicians' traditional agency relationships with patients, purchasers, and insurers are examined here. New information systems monitoring of physician ordering behavior has already begun to impact on physician autonomy and the relationship of physicians to provider organizations in both (...) for-profit and not-for-profit sectors. As managed care practice settings proliferate, serious ethical questions will be raised about agency relationships with patients.This article examines health system dynamics altering the historical agency relationship between the physician and patient and eroding the traditional autonomy of the medical profession in the United States. The corporatization of medicine and the accompanying information systems monitoring of physician productivity is seen to account of such change, now posing serious ethical dilemmas. (shrink)

BackgroundResearchers conducting community-based participatory action research (CBPAR) in highly collectivistic and socioeconomically disadvantaged community settings in sub-Saharan Africa are confronted with the distinctive challenge of balancing universal ethical standards with local standards, where traditional customs or beliefs may conflict with regulatory requirements and ethical guidelines underlying the informed consent (IC) process. The unique ethnic, socioeconomic, and cultural diversities in these settings have important implications for the IC process, such as individual decisional autonomy, beneficence, confidentiality, and signing the IC document.Main (...) textDrawing on insights and field observations from conducting CBPARs across several rural, highly communal, low literate, and low-income communities in Ghana, we discuss some theoretical, ethico-cultural, and methodological challenges associated with applying the universal, Western individualistic cultural value-laden IC process in sub-Saharan Africa. By citing field situations, we discuss how local cultural customs and the socioeconomic adversities prevalent in these settings can influence (and disrupt) the information disclosure process, individual decisional authority for consent, and voluntariness. We review the theoretical assumptions of the Declaration of Helsinki’s statement on IC and discuss its limitations as an ultimate guide for the conduct of social science research in the highly communal African context. We argue that the IC process in these settings should include strategies directed at preventing deception and coercion, in addition to ensuring respect for individual autonomy. We urge Universities, research institutions, and institutional review boards in Africa to design and promote the use of context-appropriate ethical IC guidelines that take into consideration both the local customs and traditional practices of the people as well as the scientific principles underpinning the universal IC standards.ConclusionWe recommend that, rather than adopt a universal one-size-fits-all IC approach, researchers working in the rural, highly collectivistic, low literate, socioeconomically disadvantaged settings of sub-Saharan Africa should deeply consider the roles and influence of cultural values and traditional practices on the IC and the research process. We encourage researchers to collaborate with target communities and stakeholders in the design and implementation of context-appropriate IC to prevent ethics dumping and safeguard the integrity of the research process. (shrink)

This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be (...) regarded as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context‐specific and culture‐specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end‐of‐life decision‐making. (shrink)

In 2011, the Department of Health and Human Services proposed changes to the regulations that govern human subjects protection in federally funded research. The proposed changes involve modifying inclusion standards for minimal-risk research and removing the necessity of review from certain categories of noninvasive research. All studies would instead be required to comply with privacy protections as initiated by the Health Information Portability and Accountability Act . We argue that relying on HIPAA to protect participants from participation-related risks in (...) noninvasive research is insufficient to protect the autonomy and psychological health of potential research participants. Instead, we suggest a streamlined review format for these categories of research. (shrink)

For decades, the greater part of efforts to improve regulatory frameworks for research ethics has focused on informed consent procedures; their design, codification and regulation. Why is informed consent thought to be so important? Since the publication of the Belmont Report in 1979, the standard response has been that obtaining informed consent is a way of treating individuals as autonomous agents. Despite its political success, the philosophical validity of this Belmont view cannot be taken for granted. If the Belmont view (...) is to be based on a conception of autonomy that generates moral justification, it will either have to be reinterpreted along Kantian lines or coupled with a something like Mill’s conception of individuality. The Kantian interpretation would be a radical reinterpretation of the Belmont view, while the Millian justification is incompatible with the liberal requirement that justification for public policy should be neutral between controversial conceptions of the good. This consequence might be avoided by replacing Mill’s conception of individuality with a procedural conception of autonomy, but I argue that the resulting view would in fact fail to support a non-Kantian, autonomy-based justification of informed consent. These difficulties suggest that insofar as informed consent is justified by respect for persons and considerations of autonomy, as the Belmont report maintained, the justification should be along the lines of Kantian autonomy and not individual autonomy. (shrink)

The obligation to maintain the privacy of patients and research participants is foundational to biomedical research. But there is growing concern about the challenges of keeping participant information private and confidential. A number of recent studies have highlighted how emerging computational strategies can be used to identify or reidentify individuals in health data repositories managed by public or private institutions. Some commentators have suggested the entire concept of privacy and anonymity is “dead”, and this raises legal and ethical questions (...) about the consent process and safeguards relating to health privacy. Members of the public and research participants value privacy highly, and inability to ensure it could affect participation. Canadian common law and legislation require a full and comprehensive disclosure of risks during informed consent, including anything a reasonable person in the participant or patient’s position would want to know. Research ethics policies require similar disclosures, as well as full descriptions of privacy related risks and mitigation strategies at the time of consent. In addition, the right to withdraw from research gives rise to a need for ongoing consent, and material information about changes in privacy risk must be disclosed. Given the research ethics concept of “non-identifiability” is increasingly questionable, policies based around it may be rendered untenable. Indeed, the potential inability to ensure anonymity could have significant ramifications for the research enterprise. (shrink)

No healthcare issue has generated as much ethical debate on the relationship between the individual and society as HIV Infection. In this debate, an appeal is most often made to such principles as autonomy and confidentiality to protect individuals who are HIV positive or who have AIDS from an invasion of privacy thought to be justified by society's need for information. In the first years, this emphasis on the protection of the individual was essential. Even today, there are (...) risks in disclosing one's HIV status. However, as more and more persons become Infected, live longer, and move within the healthcare industry for non-HIV related care, as both patients and healthcare workers, the terms of the debate need to be redefined. (shrink)

The scope and reach of information, driven by the explosive growth of information technologies and content types, has expanded dramatically over the past 30 years. The consequences of these changes to records and information management (RIM) professionals are profound, necessitating not only specialized knowledge but added responsibilities. RIM professionals require a professional ethics to guide them in their daily practice and to form a basis for developing and implementing organizational policies, and Mooradian’s new book provides a (...) rigorous outline of such an ethics. Taking an authoritative principles/rules based approach to the subject, this book comprehensively addresses •the structure of ethics, outlining principles, moral rules, judgements, and exceptions; •ethical reasoning, from meaning and logic to dilemmas and decision methods; •the ethical core of RIM, discussing key topics such as organizational context, the positive value of accountability, conflicts of interest, and confidentiality; •important ethical concerns like copyright and intellectual property, whistleblowing, information leaks, disclosure, and privacy; and •the relationship between RIM ethics and information governance. -/- An essential handbook for information professionals who manage records, archives, data, and other content, this book is also an ideal teaching text for students of information ethics . (shrink)

As a scientific, materialist worldview becomes increasingly difficult to repudiate, and as philosophers increasingly uncover and articulate the conceptual nature of morality and distinctively moral normativity, the threat of moral anti-realism becomes more and more real. This perspective is argued in Chapter One. Chapter Two discusses how laws and bioethical trends that pertain to the clinical management of patients in a vegetative coma differ from country to country and continue to give rise to unresolved legal debates and scientific controversy. (...) Chapter Three covers how caregivers in palliative care must be supported to better understand patients hopes and needs, making them comfortable to decide when or how much they want to eat. Chapter Four synthesises findings from four empirical studies conducted in Western Africa (Togo) on topics related to the autonomy (end of life decision-making among terminally-ill patients), benevolence and non-malevolence (breaking bad news to elderly patients and their families), and justice (informal payments to physicians, criminal prosecution in cases of HIV transmission) principles of bioethics. Finally, Chapter Five argues that expert members in Ethics committees have an unfair upper-hand, with their decisions trumping other debates in committee deliberations. Qualitative research is brought to bear which illustrates this and which also notes how expertise dilutes the training given to newly appointed ethics committee members. (shrink)

This article reviews the Dutch societal debate on euthanasia/assisted suicide in dementia cases, specifically Alzheimer's disease. It discusses the ethical and practical dilemmas created by euthanasia requests in advance directives and the related inconsistencies in the Dutch legal regulations regarding euthanasia/assisted suicide. After an initial focus on euthanasia in advanced dementia, the actual debate concentrates on making euthanasia/assisted suicide possible in the very early stages of dementia. A review of the few known cases of assisted suicide of people with so-called (...) early dementia raises the question why requests for euthanasia/assisted suicide from patients in the early stage of Alzheimer's disease are virtually non-existent. In response to this question two explanations are offered. It is concluded that, in addition to a moral discussion on the limits of anticipatory choices, there is an urgent need to develop research into the patient's perspective with regard to medical treatment and care-giving in dementia, including end-of-life care. (shrink)

The objectives of this article are (i) to identify the most challenging ethical dilemmas and questions arising from the experiences of communities and professionals affected by or involved in volcanic eruptions, including risk management, the dissemination of information, and tourism; and (ii) to provide arguments for intercultural ethics to address these dilemmas. Intercultural ethics provide invaluable resources to disaster ethics across all three phases of the complete disaster management cycle. In this article, intercultural ethics is viewed as (...) an ethics grounded in ongoing dialogue, facilitating the examination and establishment of norms and a critical reflection on values and their evolution. This approach recognizes power dynamics that may influence fair participation in dialogues and aims to address them, while also integrating elements of deliberative ethics to ensure that dialogues genuinely contribute to legitimizing decisions. Intercultural sensibility helps bridge the gap between experts and non-experts in both directions (a) by emphasizing the duty of transferring scientific knowledge (for experts) and the responsibility of acquiring scientific literacy (for citizens); and (b) by highlighting the importance of a ‘knowledge dialogue’ that acknowledges the non-scientific knowledge of citizens, rooted in their cultural background and experiences of dealing with past disasters, and shaping life in volcanic territories. (shrink)