Researchers and others involved in the research enterprise from 12 African countries met with those working in ethics and oversight in the United States as part of an effort to develop research ethics capacity. Drawing on a wealth of experience among participants, discussions at the meeting revealed five categories of issues that warrant careful attention by those engaged in similar efforts as well as international policymakers and those charged with oversight of research. (1) Principal investigators should build ‘true research teams’ (...) where members of the team are meaningfully involved in decisions regarding the protocol and its implementation. (2)There should be explicit discussion about the ‘standard of care’ at the outset of project planning that includes clarification of the terminology that is being used. (3) While internationally collaborative research may involve populations that have inherent vulnerabilities, it is important to recognize the limitations of host country solutions (such as elaborated consent processes) and look for means to negotiate appropriate protections for those willing to participate. (4) In conducting research involving biological materials it would be prudent to develop material transfer agreements at the outset of the study to clarify expectations and to minimize the likelihood of harm. (5) Those engaged in internationally collaborative research need to be alert to the potential conflicts of interests of host country ethics committees during the approval process and to take measures to manage them if they indeed exist. (shrink)

The idea that payment for research participation can be coercive appears widespread among research ethics committee members, researchers, and regulatory bodies. Yet analysis of the concept of coercion by philosophers and bioethicists has mostly concluded that payment does not coerce, because coercion necessarily involves threats, not offers. In this article we aim to resolve this disagreement by distinguishing between two distinct but overlapping concepts of coercion. Consent-undermining coercion marks out certain actions as impermissible and certain agreements as unenforceable. By (...) contrast, coercion as subjection indicates a way in which someone’s interests can be partially set back in virtue of being subject to another’s foreign will. While offers of payment do not normally constitute consent-undermining coercion, they do sometimes constitute coercion as subjection. We offer an analysis of coercion as subjection and propose three possible practical responses to worries about the coerciveness of payment. (shrink)

Abstract:This paper investigates whether, in theoretical terms, corporations can be citizens. The argument is based on the observation that the debate on “corporate citizenship” (CC) has only paid limited attention to the actual notion of citizenship. Where it has been discussed, authors have either largely left the concept of CC unquestioned, or applied rather unidimensional and decontextualized notions of citizenship to the corporate sphere. The paper opens with a critical discussion of a major contribution to the CC literature, the work (...) of Logsdon and Wood (Wood and Logsdon 2001; Logsdon and Wood 2002). It continues with a consideration of the nature and role of metaphors for business and of the contestable nature of the political concept of citizenship. It evaluates corporations as citizens through a four-dimensional framework of democratic citizenship offered by Stokes (2002). The analysis suggests that corporations do not easily fit the “liberal minimalist” model of citizenship. It finds, however some possibilities for fit with the three more participatory models. The paper concludes by cautioning against basing corporate citizenship on legal and administrative status or identity, and mapping out specific criteria by which we might determine whether corporations could be considered as citizens by virtue of their participation in processes of governance. (shrink)

There is widespread consensus among policymakers that climate change and digitalisation constitute the most pressing global transformations shaping human life in the 21st century. Seeking to address the challenges arising at this juncture, governments, technologists and scientists alike increasingly herald artificial intelligence (AI) as a vehicle to propel climate change mitigation and adaptation. In this paper, we explore the intersection of digitalisation and climate change by examining the deployment of AI in government-led climate action. Building on participant observations conducted in (...) the context of the “Civic Tech Lab for Green”—a government-funded public interest AI initiative—and eight expert interviews, we investigate how AI shapes the negotiation of environmental sustainability as an issue of public interest. Challenging the prescribed means–end relationship between AI and environmental protection, we argue that the unquestioned investment in AI curtails political imagination and displaces discussion of climate “problems” and possible “solutions” with “technology education”. This line of argumentation is rooted in empirical findings that illuminate three key tensions in current coproduction efforts: “AI talk vs. AI walk”, “civics washing vs. civics involvement” and “public invitation vs. public participation”. Emphasising the importance of re-exploring the innovative state in climate governance, this paper extends academic literature in science and technology studies that examines public participation in climate change adaptation by shedding light on the emergent phenomenon of public interest AI. (shrink)

In a recent Target Article Naomi Scheinerman (2023a) has offered an important and compelling call to institutionalize popular participation for heritable genome engineering through the inclusion of...

Some are concerned about the possibility that offering money for research participation can constitute coercion or undue influence capable of distorting the judgment of potential research subjects and compromising the voluntariness of their informed consent. The author recognizes that more often than not there are multiple influences leading to decisions, including decisions about research participation. The concept of undue influence is explored, as well as the question of whether or not there is something uniquely distorting about money as (...) opposed to a chance for treatment or medical care. An amount of money that is not excessive and is calculated on the basis of time or contribution may, rather than constitute an undue inducement, be an indication of respect for the time and contribution that research subjects make. (shrink)

A pervasive feature of democracy is disagreement. And in general, when we encounter disagreement from someone who is at least more reliable than chance, this puts some pressure on us to moderate our beliefs. But this raises the specter of asymmetric compliance—it’s not obvious what to do when we moderate our beliefs but the other party refuses to do so. Whereas an elegant solution is available when it comes to how we can to respond to our higher-order evidence while still (...) preserving democratic fairness, I argue that no such solution is forthcoming when we consider zetetic intransigence—that is, asymmetric compliance with regards to how we inquire, or gather evidence. The upshot is that democratic participation can involve messy tradeoffs with no entirely satisfactory resolution. (shrink)

Pregnancy presents some interesting challenges for the philosophy of embodied cognition. Mother and fetus are generally considered to be passive during pregnancy, both individually and in their relation. In this paper, we use the enactive operational concepts of autonomy, agency, individuation, and participation to examine the relation between mother and fetus in utero. Based on biological, physiological, and phenomenological research, we explore the emergence of agentive capacities in embryo and fetus, as well as how maternal agency changes as pregnancy (...) advances. We show that qualitatively different kinds of agency have their beginnings already in utero, and to what extent fetal and maternal movement modulate affectivity and individuation in pregnancy. We thus propose that mother and fetus are both agents who participate in pregnancy. Pregnancy then emerges as a relational developmental organization that anchors and holds its developing participants. We end the paper with reflections on ethical implications of this proposal, and suggestions for future research. (shrink)

Over the past few years, a growing number of people have called for reconceptualizing participation in health research as a moral obligation. John Harris argues that seriously debilitating diseases give rise to important needs, and since medical research is necessary to relieve those needs in many circumstances, people are morally obligated to act as research subjects.1 Rosamond Rhodes claims that research participation is a moral obligation for reasons of justice, beneficence, and self-development: because we all benefit significantly from (...) modern medicine, we are all required to do our part in advancing the state of medical knowledge.2 Individuals who reap the benefits of medical knowledge without contributing .. (shrink)

Perhaps due to the numerous community and company benefits associated with corporate volunteer programs, an increasing number of national and international firms are adopting such programs. A major issue in organizing corporate volunteer programs concerns the strategies that are most effective for recruiting employee participation. The results of this study suggest that the most effective strategies for initiating participation in volunteer programs may not be the same as the strategies that are most effective in terms of maximizing the (...) number of volunteer hours contributed by employees. More importantly, the results suggest that the most effective recruitment strategies depend on the age of the employee. The results were discussed in terms of matching the recruitment strategies with the characteristics of the potential volunteers and the nature of the volunteer project. (shrink)

Background There has been little attention paid to research on the outcomes of clinical ethics support or critical reflection on what constitutes a good CES outcome. Understanding how CES users perceive the importance of CES outcomes can contribute to a better understanding, use of and normative reflection on CES outcomes. Objective To describe the perceptions of Dutch healthcare professionals on important outcomes of moral case deliberation, prior to MCD participation, and to compare results between respondents. Methods This mixed-methods study (...) used both the Euro-MCD instrument and semi-structured interviews. Healthcare professionals who were about to implement MCD were recruited from nursing homes, hospitals, psychiatry and mentally disabled care institutions. Results 331 healthcare professionals completed the Euro-MCD instrument, 13 healthcare professionals were interviewed. The outcomes perceived as most important were ‘more open communication’, ‘better mutual understanding’, ‘concrete actions’, ‘see the situation from different perspectives’, ‘consensus on how to manage the situation’ and ‘find more courses of action’. Interviewees also perceived improving quality of care, professionalism and the organization as important. Women, nurses, managers and professionals in mentally disabled care rated outcomes more highly than other respondents. Conclusions Dutch healthcare professionals perceived the MCD outcomes related to collaboration as most important. The empirical findings can contribute to shared ownership of MCD and a more specific use of MCD in different contexts. They can inform international comparative research on different CES types and contribute to normative discussions concerning CES outcomes. Future studies should reflect upon important MCD outcomes after having experienced MCD. (shrink)

It is widely held that individuals who are unable to provide informed consent should be enrolled in clinical research only when the risks are low, or the research offers them the prospect of direct benefit. There is now a rich literature on when the risks of clinical research are low enough to enroll individuals who cannot consent. Much less attention has focused on which benefits of research participation count as ‘direct’, and the few existing accounts disagree over how this (...) crucial concept should be defined. This disagreement raises concern over whether those who cannot consent, including children and adults with severe dementia, are being adequately protected. The present paper attempts to address this concern by considering first what additional protections are needed for these vulnerable individuals. This analysis suggests that the extant definitions of direct benefits either provide insufficient protection for research subjects or pose excessive obstacles to appropriate research. This analysis also points to a modified definition of direct benefits with the potential to avoid these two extremes, protecting individuals who cannot consent without blocking appropriate research. (shrink)

In his book Bad Beliefs, Neil Levy defends the engineering of our epistemic environment by removing epistemic pollutions and by nudging people through second-order evidence. Although we agree with his core ideas, in this commentary, we aim at supplementing his approach in light of the participation of the general public in science. In the first part, we argue that the issue of participatory epistemic injustice in the scientific community remains unaddressed in Levy’s discussion and that addressing the issue is (...) equal to removing an epistemic pollution. In the second part, we address the issue of transparency in nudging. Here, we discuss the significance of public engagement in controlling the system of nudges to respect our rational and autonomous choices. (shrink)

In Western societies, participation is promoted as fundamental right of citizens and a prerequisite for better health and quality of life. Over the last 10 years, individual parti-cipation in treat...

In recent decades, constituenciesserved by land-grant agricultural research haveexperienced significant demographic and politicalchanges, yet most research institutions have not fullyresponded to address the concerns of a changingclientele base. Thus, we have seen continuingcontroversies over technologies produced by land-grantagricultural research. While a number of scholars havecalled for a more participatory agricultural scienceestablishment, we understand little about the processof enhancing and institutionalizing participation inthe US agricultural research enterprise. We firstexamine some of the important issues surroundingcitizen participation in science and technologypolicy. (...) We then review and assess variousinstitutional mechanisms for participation that havebeen implemented in diverse settings by institutionsof science and technology. Based on evidence from theexperiences of these institutions, we argue that acloser approximation of the ‘public good’ can beachieved by encouraging the participation of thefullest range possible of constituents as an integralpart of the process of setting research priorities. (shrink)

Recruitment processes for clinical trials are governed by guidelines and regulatory systems intended to ensure participation is informed and voluntary. Although the guidelines and systems provide some protection to potential participants, current recruitment processes often result in limited understanding and experiences of inadequate decision support. Many trials also have high drop-out rates among participants, which are ethically troubling because they can be indicative of poor experiences and they limit the usefulness of the knowledge the trials were designed to generate. (...) Drawing on recent social-psychological and philosophical-ethical research on trial recruitment and patient participation in treatment decision-making, this paper identifies possibilities for improving communicative support for both initial decisions and ongoing participation in clinical trials. It highlights the potential of a shift in thinking about ‘voluntariness’, underpinned by relational understandings of autonomy, to encourage more nuanced judgements about the ethics of communication between trial staff and (potential) participants. The paper suggests that the idea of responsively enabling people to consider invitations or requests to participate in particular trials could serve as a general guide to communication. This might help ensure decisions about trial participation are meaningfully informed and voluntary, and that relationships between trial staff and participants contribute to positive experiences of trial participation and ultimately to the generation of the robust knowledge. (shrink)

Healthcare user fees present an important barrier for accessing services for the poorest (indigents) in Burkina Faso and selective removal of fees has been incorporated in national healthcare planning. However, establishing fair, effective and sustainable mechanisms for the removal of user fees presents important challenges. A participatory action-research project was conducted in Ouargaye, Burkina Faso, to test mechanisms for identifying those who are indigents, and funding and implementing user fee removal. In this paper, we explore stakeholder perceptions of ethical considerations (...) relating to participation and partnership arising in the action-research. (shrink)

It has historically been a crime in Canada to provide assistance to someone in ending their own life, however, this paradigm was inverted in 2015 when the Supreme Court of Canada ruled that restrictions on this practice, within certain defined parameters, violated the right to life, liberty, and security of the person. Subsequently, recent legal and policy decisions have highlighted the issue of how to balance the rights of individuals to access MAiD with the rights of care providers to exercise (...) conscience-based objections to participation in this process. We argue that there is significant harm and ethical hazard in disregarding individual and institutional rights to conscientious objection and since measures less coercive than the threat of regulatory or economic sanctions do exist, there should be no justification for such threats in Canada’s health care systems. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making in (...) pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

There are important ethical issues that must be carefully thought through when undertaking research with children. This paper explores how the context of such issues changes with the individual cir...

There are a number of agricultural farming practices that are controversial. These may include using chemical fertilizers, pesticides, and herbicides, and planting genetically modified crops, as well as the decision to dehorn cattle rather than raise polled cattle breeds. We use data from a survey of Missouri crop and livestock producers to determine whether a farmer’s ethical framework affects his or her decision to engage in these practices. We find that a plurality of farmers prefer an agricultural policy that reflects (...) principles based on rights rather than principles of utilitarianism or justice. Furthermore, after controlling for personal and farm characteristics, we find a positive correlation between farmers preferring a rights-based policy and a farmer’s use of chemical farm inputs and polled rather than horned cattle. We also find that a combination of ethical framework and farm and farmer characteristics correlate with decisions to use farm chemicals, while only farm and farmer characteristics affect the decision to plant GM crops and only a farmer’s ethical framework affects the decision to use polled cattle. (shrink)

The book considers the relationship between governance and participation, and the ways participation has been understood, framed and applied in the context of synthetic biology (SB) governance approaches. Based on fundamental questions about the scope, purpose, and responsibilities assigned to public participation activities, the authors conducted an literature review of policy reports and articles on SB governance. The authors identify key characteristics of synthetic biology, such as the complex interplay of research, engineering and IT expertise in the (...) field, as well as the challenges these characteristics pose in designing governance frameworks. Drawing on insights from a literature review, the authors contest calls for “earlier” and “more” participation on the basis that such calls fail to consider the necessary structural adjustments and resources needed for such endeavors. The brief addresses ethical questions arising in synthetic biology that could be used for developing frameworks of governance in the ongoing COVID-19 crisis and the consequent innovations in vaccine research. (shrink)

BackgroundInformed consent as stipulated in regulatory human research guidelines requires volunteers to be well-informed about what will happen to them in a trial. However, researchers may be faced with the challenge of how to ensure that a volunteer agreeing to take part in a clinical trial is truly informed. This study aimed to find out volunteers’ comprehension of informed consent and voluntary participation in Human Immunodeficiency Virus (HIV) clinical trials during the registration cohort.MethodsWe conducted a qualitative study among volunteers (...) who were enrolled in the registration cohort of HIV clinical trials in Dar es Salaam, Tanzania. A purposive sampling strategy was used to obtain twenty study participants. The data were collected between June and September 2020 using a semi-structured interview guide. In-depth interviews were used to collect the data to obtain deep insights of the individual study participants on the comprehension of informed consent and participation in the clinical trial. A thematic analysis approach was used to analyze the data. Themes and subthemes were supported by the quotes from the participants.ResultsVolunteers described comprehension of informed consent from different perspectives. They reported that various components of the informed consent such as study procedure, confidentiality, risk and benefits were grasped during engagement meetings. Furthermore, the volunteers’ decision to participate in the registration cohort was voluntary. However, trial aspects such as health insurance, free condoms, and medical checkups could have indirectly influenced their reluctance to withdraw from the study.ConclusionEngagement meetings may increase the comprehension of informed consent among potential participants for HIV clinical trials. However, trial incentives may influence participation, and thus future research should focus on the challenges of giving incentives in the study. This will ensure comprehension and voluntary participation in the context of HIV clinical trials. (shrink)

This chapter aims to explore the intersection of Christian theism, a neo-Aristotelian gloss on metaphysical grounding, and creaturely participation in God. In section one, I aim to de- velop several core tenets at the heart of a theistic participatory ontology as it is found in the Christian tradition, what I call minimal participatory ontology. In section two, I examine the contemporary notion of metaphysical grounding, namely the formal and structure features of the grounding relation, and offer a grounding-theoretic framework (...) for understanding a mini- mal participatory ontology. Finally, in section three, I put forward a neo-Aristotelian account of metaphysical grounding in particular, one that is uniquely suited to capture the central tenets of minimal participatory ontology. (shrink)

Anouck Alary | : La transformation du sang placentaire en une précieuse source de cellules souches a donné naissance à partir des années 1990 à une industrie globale de conservation de sang de cordon ombilical faisant désormais concurrence à un large réseau de banques publiques de sang de cordon. Cet article explore les soubassements socioculturels liés à l’émergence de cette industrie et tente d’élucider les enjeux éthiques et politiques qu’elle pose. Si les banques publiques de sang de cordon sont porteuses (...) des valeurs d’altruisme et de solidarité nationale traditionnellement liées au modèle redistributif d’échange de sang et d’organes né après la Seconde Guerre mondiale, les banques privées renvoient, elles, à des formes de solidarité bien différentes. C’est effectivement sous couvert de la solidarité familiale et de la responsabilité morale des mères de protéger leurs enfants qu’elles définissent la conservation privée comme une forme d’ « assurance biologique » contre les risques à la santé de l’enfant. En permettant aux mères d’investir leurs tissus corporels à la fois dans le futur incertain de leurs enfants et dans des thérapies cellulaires expérimentales, ces banques promeuvent un nouveau modèle de participation du/de la patient.e à la coconstitution de futures innovations thérapeutiques. Nous inscrivons ce modèle de participation dans les reconfigurations contemporaines du biopolitique que le sociologue britannique Nikolas Rose voit s’incarner dans l’émergence d’une nouvelle forme de biocitoyenneté. L’article critique finalement ces services personnalisés en soulignant qu’ils ont le potentiel d’opérer de nouvelles formes de coercition sur les mères, dans un contexte sociopolitique caractérisé par une responsabilisation accrue des individus au regard de la « bonne gestion » de leurs risques à la santé. Ces services sont aussi jugés problématiques sur le plan éthique, au vu de leur incohérence avec un principe de justice distributive défendant l’accès égal pour chaque citoyen.ne à des soins de santé de base. | : Since the 1990s, the transformation of cord blood into a precious source of stem cells has given rise to a global cord blood bank industry, which is now competing with a large network of public cord blood banks. This article explores the sociocultural context surrounding the emergence of this industry and aims at elucidating the ethical and political concerns that this industry raises. Whereas public cord blood banks are purveyors of values such as altruism and national solidarity traditionally linked to the redistributive model of human blood and organ donation that emerged after World War Two, private banks engage very different forms of solidarity. It is indeed under the guise of family solidarity and mothers’ moral responsibility to do their best to protect their children that they come to define private preservation as a form of “biological insurance” against potential risks to their children’s health. By allowing mothers to invest their bodily tissues simultaneously in their children’s uncertain future and in experimental cell therapies, these banks promote a new model of patient participation in the development of future therapeutic innovations. This article analyzes this model as embedded in the contemporary reconfiguration of biopolitics that sociologist Nikolas Rose envisions as constituting a new form of biocitizenship. The paper finally casts a critical eye on these personalized services, in particular because of the new forms of social coercion on mothers that are brought about in a social and political context characterized by an increasing moral accountability of individuals with regard to the “good management” of their own health risks. These services also appear ethically problematic in relation to political demands of distributive justice—e.g., the ideal of equal access to basic health care for every citizen. (shrink)

Discursive deference in the governance of science and technology is rebalancing from expert analysis toward participatory deliberation. Linear, scientistic conceptions of innovation are giving ground to more plural, socially situated understandings. Yet, growing recognition of social agency in technology choice is countered by persistently deterministic notions of technological progress. This article addresses this increasingly stark disjuncture. Distinguishing between “appraisal” and “commitment” in technology choice, it highlights contrasting implications of normative, instrumental, and substantive imperatives in appraisal. Focusing on the role of (...) power, it identifies key commonalities transcending the analysis/participation dichotomy. Each is equally susceptible to instrumental framing for variously weak and strong forms of justification. To address the disjuncture, it is concluded that greater appreciation is required—in both analytic and participatory appraisal—to facilitating the opening up of governance commitments on science and technology. (shrink)

This article shows how activists in the open data movement re-articulate notions of democracy, participation, and journalism by applying practices and values from open source culture to the creation and use of data. Focusing on the Open Knowledge Foundation Germany and drawing from a combination of interviews and content analysis, it argues that this process leads activists to develop new rationalities around datafication that can support the agency of datafied publics. Three modulations of open source are identified: First, by (...) regarding data as a prerequisite for generating knowledge, activists transform the sharing of source code to include the sharing of raw data. Sharing raw data should break the interpretative monopoly of governments and would allow people to make their own interpretation of data about public issues. Second, activists connect this idea to an open and flexible form of representative democracy by applying the open source model of participation to political participation. Third, activists acknowledge that intermediaries are necessary to make raw data accessible to the public. This leads them to an interest in transforming journalism to become an intermediary in this sense. At the same time, they try to act as intermediaries themselves and develop civic technologies to put their ideas into practice. The article concludes with suggesting that the practices and ideas of open data activists are relevant because they illustrate the connection between datafication and open source culture and help to understand how datafication might support the agency of publics and actors outside big government and big business. (shrink)

This study explored perceived benefits and risks of participation in HIV research among 33 female sex workers in Tecún Umán, Guatemala. Stigma associated with sex work and HIV was a critical barrier to research participation. Key benefits of participation included access to HIV/sti prevention and testing, as well as positive and trusting relationships between sex workers and research teams. Control exerted by managers had mixed influences on perceived research risks and benefits. Results underscore the critical need for (...) HIV investigators to develop population-tailored procedures to reduce stigma; engage managers; and reinforce trusting, reciprocal relationships between sex work communities and researchers. (shrink)

Public participation broadcasting has recently become the focus of attention in media studies, as well as from the social interactional perspectives of discourse and conversation analysis, and it has been argued in particular that the talk show genre has given new and enhanced status to the `authentic' voice of lay members of the public. What remains largely unexplored is how lay participants discursively construct authentic positions for their own knowledgeable participation in such discourse. Expert speakers in public (...) class='Hi'>participation broadcasts are typically attributed names, rank, institutional affiliation and status, which legitimizes their position, and in so doing provides their warrant to talk about whatever issue they have been brought in to discuss. Lay participants typically do not have this status attributed to them, but need to establish their own position from which to talk. In this article I examine the public identities that lay speakers build for themselves in these broadcasts, and show how they routinely draw on a range of discursive resources to construct situated, local identities which provide a warrant for what they have to say. (shrink)

The aim of this study was to explore experiences of participation in treatment planning decisions from the perspective of patients recently treated for colorectal cancer. Ten patients were purposively selected and interviewed. Constant comparative analysis, the core concept of grounded theory, was used. The dimensions were developed and organized into the main theme of ‘compliant participation in serious decisions’, which was composed of the two variations: complying with participation; and complying without participation. Complying with participation (...) was characterized by feelings of self-confidence and self-competence and by open dialogue between the participants, significant others and the physician. Complying without participation was characterized by participants’ feelings of uncertainty and distress, and of being rushed into submitting to decisions without having time to reflect on the information provided or the opportunity to influence the treatment and care process. To participate (or choosing not to participate) builds on open and affirming dialogue, information and knowledge about the illness. Patient participation in treatment and care decision making is interpreted as a health promoting way of coping with illness. (shrink)

This paper comments on five problems concerning the transformation of the Polish economy with special emphasis on employee participation and trust. 1) There can be no ethical evaluation or justification of employee participation independent of the goals of the transformation. 2) In Poland this participation is affected by deep distrust towards the whole process of transformation. 3) Privatisation is the topic most often mentioned in this connection. 4) The definition of trust becomes even more crucial when the (...) phenomenon of distrust has to be explained. 5) Institutions can become the substitute of trust. (shrink)