Unresolved disagreements on issues of access, censorship, and privacy within the information profession can be dangerous when entrepreneurial interests outweigh the public good and as corporations anticipate financial gain from placing limitations on information retrieval and use. The information profession can benefit from a grounding of its core values in a robust moral framework that can coherently place demands on interested parties. We argue that grounding the core values of privacy and ubiquitous access to (...) class='Hi'>information in a needs-based theory of rights is most suitable within the unique context of the information profession. (shrink)

In Spring 2008 I went textbook-free. I linked all and only the readings for my Contemporary Analytic Philosophy course to the class website, along with powerpoints, handouts and external links to online resources.

As a profession, librarians have proclaimed an ethical duty to ensure access to information for all people. However, many barriers exist to fulfilling this duty, including varying levels of education and technology around the globe, the cost of obtaining research information, and the concentration of scholarly publishing in English. This article outlines these barriers, concluding with a call to action for librarians to advocate for multilingual Open Access, to foster international scholarly communities, and to champion Internet (...) access for all. (shrink)

Recently adopted international texts have given a new focus on conflicts of interests and access to information resulting from biomedical research. They confirmed ethical review committees as a central point to guarantee individual rights and the effective application of ethical principles. Therefore specific attention should be paid in giving such committees all the facilities necessary to keep them independent and qualified.

In two experiments and two different research paradigms, we tested the hypothesis that Zen meditation increases access to accessible but unconscious information. Zen practitioners who meditated in the lab performed better on the Remote Associate Test than Zen practitioners who did not meditate. In a new, second task, it was observed that Zen practitioners who meditated used subliminally primed words more than Zen practitioners who did not meditate. Practical and theoretical implications are discussed.

Recently adopted international texts have given a new focus on conflicts of interests and access to information resulting from biomedical research. They confirmed ethical review committees as a central point to guarantee individual rights and the effective application of ethical principles. Therefore specific attention should be paid in giving such committees all the facilities necessary to keep them independent and qualified.

This article explores the future impact of an African renaissance with a specific emphasis on information ethics to address the needs of the emerging virtual realm. The four main focus areas include the technologi-cal challenges to deploy ICT infrastructure to enable the delivery of information to the people and to allow for new means of communication. The second focus considers the economic obstacles that need to be consi-dered in the quest to empower average citizens to exercise their right (...) to access information. The third focus addresses the linguistic and cultural realities that hinder the adoption of some ICTs. The final focus considers the legal framework that has to be developed and strengthened to establish citizen‘s rights of access and privacy in cyberspace. (shrink)

Advances in technology are bringing greater insight into the mind, raising a host of privacy concerns. However, the basic psychological mechanisms underlying the perception of privacy violations are poorly understood. Here, we explore the relation between the perception of privacy violations and access to information related to one’s “self.” In two studies using demographically diverse samples, we find that privacy violations resulting from various monitoring technologies are mediated by the extent to which the monitoring is thought to provide (...) access to self-relevant information, and generally neuromonitoring did not rate among the more invasive monitoring types. However, brain monitoring was judged to be more of a privacy violation when described as providing access to self-relevant information than when no such access was possible, and control participants did not judge the invasiveness of neuromonitoring any differently than those told it provided no access to self-relevant information. (shrink)

Conscious access to fear-relevant information is mediated by threshold The present report proposed a model of access consciousness to fear-relevant information according to which there is a threshold for emotional perception beyond that the subject makes hits with no false alarm. The model was examined by having the participants performed a confidence-ratings masking task with fearful faces. Measures of the thresholds for conscious access were taken by looking at the receiver operating characteristics curves generated from (...) a three-state low- and high-threshold model by Krantz. Indeed, the analysis of the masking data revealed that the ROCs had threshold-like-nature rather continuous challenging in this fashion the classical signal-detection view on perceptual processing. Moreover, the threshold ROC curve exhibited the specific y-intercepts relevant to conscious access performance. The study suggests that the threshold can be an intrinsic property of conscious access, mediating emotional contents between perceptual states and consciousness. (shrink)

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data. This exceptionalism is ethically problematic due to important concerns and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

An issue about the privacy of the clustered groups designed by algorithms arises when attempts are made to access certain pieces of information about those groups that would likely be used to harm them. Therefore, limitations must be imposed regarding accessing such information about clustered groups. In the discourse on group privacy, it is argued that the right to privacy of such groups should be recognised to respect group privacy, protecting clustered groups against discrimination. According to this (...) viewpoint, this right places a duty on others, for example, private companies, institutions, and governments, to refrain from accessing such information. To defend the idea that the right to privacy should be recognised for clustered groups, at least two requirements must be satisfied. First, clustered group privacy must be conceived of as either a collective good or a participatory good. Since these forms of good are of the type from which no member of a group can be excluded from benefiting, the right to them is defined as a group right. Second, there must be group interests on which to base a group right. Group interests can be either the interests of those members that are a result of their being in the group or the interests of the group as a whole that transcend the interests of its members. However, this paper argues that clustered group privacy cannot be conceived of as either a collective or a participatory good because it is possible for some individuals to be excluded from benefiting from it. Furthermore, due to the lack of awareness among individuals that they are members of a clustered group and the nature of a clustered group itself, such groups cannot have the group interests necessary to establish a group right. Hence, the group right to privacy cannot be recognised for these groups, implying that the group right cannot be considered a means to protect clustered groups against discrimination. Instead, this paper suggests that moral principles need to be articulated within an ethics of vulnerability to identify the moral obligations of protecting vulnerable clustered groups. The duty owed to the vulnerable should involve refraining from accessing certain information about clustered groups in specific contexts. This duty is not engendered by the right to privacy of such groups; it is the duty owed to the vulnerable. The findings highlight the need to articulate moral principles regarding privacy and data protection to protect clustered groups in contexts in which accessing information about them could constitute a reason for discriminatory targeting. (shrink)

The development of new methods in the field of prenatal testing leads to an expansion of information that needs to be provided to expectant mothers. The aim of this research is to explore opinions and attitudes of gynecologists in Germany, Poland and Russia towards access to prenatal testing and diagnostics in these countries. Semi-structured interviews were conducted with n = 18 gynecologists in Germany, Poland and Russia. The interviews were analyzed using the methods of content analysis and thematic (...) analysis. Visible in all three countries is a connection of prenatal medicine with the politically and socially contentious issue of pregnancy termination. Respondents in Poland and Russia concentrated on the topic of inadequate resources. Quality of information for expectant mothers is an important point in all three countries. Only in Germany was the issue of language barriers in communication raised. With regard to non-invasive prenatal testing (NIPT) respondents in Germany focused on the ethical issues of routinization of testing; in Poland and Russia they concentrated on fair access to NIPT. Challenges in all three countries arise from structural factors such as imprecise and prohibitive regulations, lack of resources or organization of healthcare services. These should be addressed on a political and medico-ethical level. (shrink)

Many countries have imposed strict regulations on the genetic information to which insurers have access. Commentators have warned against the emerging body of legislation for different reasons. This paper demonstrates that, when confronted with the argument that genetic information should be available to insurers for health insurance underwriting purposes, one should avoid appeals to rights of genetic privacy and genetic ignorance. The principle of equality of opportunity may nevertheless warrant restrictions. A choice-based account of this principle implies (...) that it is unfair to hold people responsible for the consequences of the genetic lottery, since we have no choice in selecting our genotype or the expression of it. However appealing, this view does not take us all the way to an adequate justification of inaccessibility of genetic information. A contractarian account, suggesting that health is a condition of opportunity and that healthcare is an essential good, seems more promising. I conclude that if or when predictive medical tests (such as genetic tests) are developed with significant actuarial value, individuals have less reason to accept as fair institutions that limit access to healthcare on the grounds of risk status. Given the assumption that a division of risk pools in accordance with a rough estimate of people's level of (genetic) risk will occur, fairness and justice favour universal health insurance based on solidarity. (shrink)

This article is currently available as a free download on ingentaconnect.

The background of this paper is the ongoing dismantling of the social insurance systems in favour of commercialisation and privatisation of insurances needed for illness, old age and premature death. This combined with the increased possibility of using genetic testing for differentiating personal insurance premiums has the potentiality of creating a ‘genetic proletariat’ — an uninsurable high-risk population. The common way of handling this problem in Sweden, and many other developed countries around the North Atlantic, has been to regulate insurance (...) companies’ right to ask for and use genetic information in various ways. There is a distinction between partial regulation (that allows insurance companies access to genetic information from genetic tests already made, sometimes only above a specified amount, but not to demand new tests) and total regulation (that forbids insurance companies to ask for or use any genetic information). I will argue that these forms of regulation probably will have adverse consequences given the dismantling of collective social insurance systems. If this is convincing, a better way to solve the problem of an uninsurable high-risk population (and other problems) is to resurrect the collective, obligatory insurance systems in which the individual risk profile does not constitute a basis for premium determination. Both arguments cast in terms of consequences and justice render support for this conclusion. (shrink)

During a prostate exam, Mr. Watson, age 65, learns that his prostate appears to be abnormal. The family physician conducting the exam, Dr. Kleinman, informs Mr. Watson that he may have prostate cancer. Mr. Watson agrees to a variety of tests, including blood tests, bone scans, ultrasound scanning, and a biopsy. After learning about this possible diagnosis and these tests, Mr. Watson surfs the Web for information about prostate cancer and gathers data from many different sources, including the National (...) Cancer Society, the National Institutes of Health, Johns Hopkins University, the Mayo Clinic, and medicine sites. He also searches for information from medical journals using MEDLINE, visits several chat rooms on prostate cancer, and joins some e-mail lists. He arrives in Dr. Kleinman's office for a follow-up appointment with a stack of material and many questions. Dr. Kleinman is surprised, irritated, and offended. He recommends that Mr. Watson have a prostatectomy followed by radiation, but Mr. Watson does not want this operation. He would rather receive a form of radiation therapy recently approved by the FDA that he learned about through his own research. Dr. Kleinman admits that he does not know much about this new treatment, but he says that he would read up on it and consult an oncologist. (shrink)

The public interest in the administration of justice requires access to justice for all. But access to justice must be “meaningful” access. Meaningful access requires procedures, processes, and institutional structures that facilitate communication among participants and decision-makers and ensure that judges and other decision-makers have the resources they need to render fully informed and sound decisions. Working from that premise, which is based on a reconceptualization of the objectives and methods of the justice process, the author (...) proposes numerous specific changes in decision-making processes and practices. These changes are required to achieve a standard of decision-making that is consistent with the public interest in the administration of justice within a constitutional framework under the social and political conditions of the early 21st century. The essay illustrates the application of the principles and methods of legitecture to analysis of problems of institutional design in law. (shrink)

Clinical ethics support services are developing in Europe. They will be most useful if they are designed to match the ethical concerns of clinicians. We conducted a cross-sectional mailed survey on random samples of general physicians in Norway, Switzerland, Italy, and the UK, to assess their access to different types of ethics support services, and to describe what makes them more likely to have used available ethics support. Respondents reported access to formal ethics support services such as clinical (...) ethics committees (23%), consultation in individual cases (17.6%), and individual ethicists (8.8%), but also to other kinds of less formal ethics support (23.6%). Access to formal ethics support services was associated with work in urban hospitals. Informal ethics resources were more evenly distributed. Although most respondents (81%) reported that they would find help useful in facing ethical difficulties, they reported having used the available services infrequently (14%). Physicians with greater confidence in their knowledge of ethics (P = 0.001), or who had had ethics courses in medical school (P = 0.006), were more likely to have used available services. Access to help in facing ethical difficulties among general physicians in the surveyed countries is provided by a mix of official ethics support services and other resources. Developing ethics support services may benefit from integration of informal services. Development of ethics education in medical school curricula could lead to improved physicians sensititity to ethical difficulties and greater use of ethics support services. Such support services may also need to be more proactive in making their help available. (shrink)

Economic pressures and information policy changes in the public and private sectors are influencing the kinds, amounts, and availability of information to agricultural producers. This analysis identifies some of the major changes, examines their effects, identifies some issues of equity, and poses questions for further study. The changes are found to have special negative effects on producers with smaller operations, fewer financial resources, lower levels of formal education, remote locations, specialized enterprises, and low input enterprises.

Current evolutionary and cognitive theories of religion posit that supernatural agent concepts emerge from cognitive systems such as theory of mind and social cognition. Some argue that these concepts evolved to maintain social order by minimizing antisocial behavior. If these theories are correct, then people should process information about supernatural agents’ socially strategic knowledge more quickly than non-strategic knowledge. Furthermore, agents’ knowledge of immoral and uncooperative social behaviors should be especially accessible to people. To examine these hypotheses, we measured (...) response-times to questions about the knowledge attributed to four different agents—God, Santa Claus, a fictional surveillance government, and omniscient but non-interfering aliens—that vary in their omniscience, moral concern, ability to punish, and how supernatural they are. As anticipated, participants respond more quickly to questions about agents’ socially strategic knowledge than non-strategic knowledge, but only when agents are able to punish. (shrink)

How closely involved with hospital ethics committees should patients and their families become? Should they routinely have access to committees, or be empowered to initiate consultations? To what extent should they be informed of the content or outcome of committee deliberations? Seeing ethics committees as the locus of competing responsibilities allows us to respond to the questions posed by a patient rights model and to acknowledge more fully the complex moral dynamics of clinical medicine.

Gender differences in knowledge of NRM practices have long been noted in Senegal and throughout Sub-Saharan Africa. An exploration of these differences among a sample of rural Senegalese men and women shows that these differences are, in part, a function of extension agent interventions. The level of knowledge of a set of NRM technologies is associated with contact with three key types of extension agent in rural Senegal: extension team leaders, forestry agents, and women's agents. Analysis of intra-household variation in (...) levels of knowledge shows a degree of interdependence between the knowledge levels of husbands and wives for some practices. However, multi-variate analysis, controlling for personal and contextual factors, clearly demonstrates the independent impact of extension agents on gender differences in rural Senegalese NRM knowledge. It can be concluded that contact with extension agents increases knowledge of NRM practices. In particular, contact with the women's agent is a strong predictor of the level of women's NRM knowledge and, surprisingly, also contributes to the level of men's knowledge. Despite the small number of women's agents in the field, they appear to have significant positive impact on the dissemination of NRM knowledge among rural Senegalese women and men. (shrink)

Universal access to antiretroviral treatment (ART) in Chad was officially declared in December 2006. This presidential initiative was and is still funded 100% by the country’s budget and external donors’ financial support. Many factors have triggered the spread of AIDS. Some of these factors include the existence of norms and beliefs that create or increase exposure, the low-level education that precludes access to health information, social unrest, and population migration to areas of high economic opportunities and gender-based (...) discrimination. Social forces that influence the distribution of dimensions of well-being and shape risks for infection also determine the persistence of access barriers to ART. The universal access policy is quite revolutionary but should be informed by the systemic barriers to access so as to promote equity. It is not enough to distribute ARVs and provide health services when health systems are poorly organized and managed. Comprehensive access to ART raises many organizational, ethical and policy problems that need to be solved to achieve equity in access. This paper argues that the persistence of access barriers is due to weak health systems and a poor public health leadership. AIDS has challenged health systems in a manner that is essentially different from other health problems. (shrink)

Down syndrome (Trisomy 21) is a mild to moderate intellectual disability. Historically, this condition has been a primary target for prenatal testing. However, Down syndrome has not been targeted for prenatal testing because it is an especially severe illness. The condition was just one that could be easily identified prenatally using the techniques first available decades ago. We are moving into an era in which we can prenatally test for a vast range of human traits. I argue that when we (...) can test for anything, there is no longer any reason to continue targeting Down syndrome. I present an argument based on the value of nondiscrimination. It is justified to set limits on access to prenatal information if the information is going to be used for discriminatory purposes. I use the examples of (1) prenatal testing for misogynistic fetal sex selection, and (2) homophobia-motivated prenatal testing for potential homosexuality, as compelling analogies. (shrink)

Prenatal genetic testing is becoming available for an increasingly broad set of diseases, and it is only a matter of time before parents can choose to test for hundreds, if not thousands, of genetic conditions in their fetuses. Should access to certain kinds of fetal genetic information be limited, and if so, on what basis? We evaluate a range of considerations including reproductive autonomy, parental rights, disability rights, and the rights and interests of the fetus as a potential (...) future child. We conclude that parents should be able to access information that could be useful during pregnancy, but that testing for non-medical information should be limited. Next, we argue that the government lacks a compelling state interest in regulating prenatal genetic testing and propose that regulation should occur through medical professional organizations. Finally, we present a framework for determining what testing physicians should recommend, offer neutrally, or not offer at all. (shrink)

This paper connects to Jon Bing’s great vision of an integrated national legal information system. The intention of this paper is to variegate Bing’s vision of an integrated information system by shifting the focus to the lay users, thus to those, who are subject to the law. The modified vision is an integrated information system that supports intelligible access to law for the citizens. This presupposes however an unambiguous and transparent legal system. Accordingly, it is also (...) stressed that intelligent legal knowledge engineering has high potential to increase precision and rationality in law, and hence safeguard the predictability of law and legal certainty. The central hypothesis is that putting the person who is subject to the law at the centre provides more rational reason to aim for the greatest possible precision of law by exploiting the means and technologies of our time than to uphold strategic vagueness. On this basis, the paper proposes the development of a basic set of controllable and justiciable basic legal drafting standards on EU and on national level, and promotes a transparency by design approach for legal knowledge engineering in order to enhance precision, integrity, comprehensibility and accessibility of law. Similarly to Jon Bing’s vision, this modified vision of an integrated legal information systems is, most probably, also likely to remain unfulfilled. However, what would science be without visions and (science) fictions? (shrink)

Access to legal information and, in particular, to legal literature is examined for the creation of a search and retrieval system for Italian legal literature. The design and implementation of services such as integrated access to a wide range of resources are described, with a particular focus on the importance of exploiting metadata assigned to disparate legal material. The integration of structured repositories and Web documents is the main purpose of the system: it is constructed on the (...) basis of a federation system with service provider functions, aiming at creating a centralized index of legal resources. The index is based on a uniform metadata view created for structured data by means of the OAI approach and for Web documents by a machine learning approach, which, in this paper, has been assessed as regards document classification. Semantic searching is a major requirement for legal literature users and a solution based on the exploitation of Dublin Core metadata, as well as the use of legal ontologies and related terms prepared for accessing indexed articles have been implemented. (shrink)

Researchers are developing a fertility preservation technique?testicular tissue cryopreservation (TTCP)?for prepubescent boys who may become infertile as a result of their cancer treatment. Although this technique is still in development, some researchers are calling for its widespread use. They argue that if boys do not bank their tissue now, they will be unable to benefit from any therapies that might be developed in the future. There are, however, risks involved with increasing access to an investigational procedure. This article examines (...) four methods of expanding access to TTCP: (1) expansion of institutional review board (IRB)-approved research trials; (2) offering TTCP as an innovative procedure in hospitals; (3) offering TTCP as a standard practice in hospitals; and (4) commercialization of TTCP. The ethical and practical implications of each are evaluated through a comparison with umbilical cord blood banking (UCBB), a technology that has achieved widespread use based on similar claims of future benefit. (shrink)

As nursing professionals, we believe access to healthcare is fundamental to health and that it is a determinant of health. Therefore, evidence suggesting access to healthcare is problematic for many Indigenous peoples is concerning. While biomedical perspectives underlie our current understanding of access, considering alternate perspectives could expand our awareness of and ability to address this issue. In this paper, we critique how access to healthcare is understood through a biomedical lens, how a postcolonial theoretical lens (...) can extend that understanding, and the subsequent implications this alternative view raises for the nursing profession. Drawing on peer‐reviewed published and gray literature concerning healthcare access and Indigenous peoples to inform this critique, we focus on the underlying theoretical lens shaping our current understanding of access. A postcolonial analysis provides a way of understanding healthcare as a social space and social relationship, presenting a unique perspective on access to healthcare. The novelty of this finding is of particular importance for the profession of nursing, as we are well situated to influence these social aspects, improving access to healthcare services broadly, and among Indigenous peoples specifically. (shrink)

This article focuses on how to provide environmental descriptions of the context with the intent of creating access to information and dialogical participation for deafblind persons. Multimodal interaction is needed to communicate with deafblind persons whose combined sensory loss impedes their access to the environment and ongoing interaction. Empirical data of interpreting for deafblind persons are analyzed to give insight into how this task may be performed. All communicative activities vary due to their context, participants, and aim. (...) In this study, our data are part of a cross-linguistic study of tactile sign language and were gathered during a guided tour for a deafblind group. The guided tour was tailored to a specific group (adult deafblind tactile signers and their interpreters) visiting one of the oldest cathedrals and pilgrim sites in Scandinavia, with interpreters following up the guide’s presentation and providing descriptions based on the given situation. The tour and the interpreters’ work were videotaped, and the ongoing interaction and communication have been studied through video-ethnographic methods and conversational analysis. The data have been investigated for the research question: What elements are involved in descriptions to provide deafblind individuals access to their environments? Theories from multimodality communicative studies are relevant for the ways tactile descriptions are presented and analyzed. Some of this is an investigation at a microlevel of interaction. An overall inspiration for this study is interaction studies with data from authentic formal and informal conversations and ways of analyzing embodied action and situated gestures in studies of human interaction. Also, concepts of “frontstage,” “backstage,” and “main conversation” are brought into our interpreter-mediated data to follow the role of building meaning in complex conversations. Theories on interaction are used in the analyses to illustrate the participating framework between the guide, the interpreter, the deafblind person, and the situated frame of their interaction. The study opens for a broader understanding of the repertoire of multimodal interaction and how such interaction may be handled as inputs in communication processes. This is of relevance for communication with deafblind persons, for professionals meeting blind and deafblind clients, and for knowledge of multimodal interaction in general. (shrink)

Objectives: To report the attitudes and opinions of subjects in US clinical trials about whether or not, and why, they should receive post-trial access (PTA) to the trial drug, care and information. Design: Focus groups, short self-administered questionnaires. Setting: Boston, Dallas, Detroit, Oklahoma City. Participants: Current and recent subjects in clinical trials, primarily for chronic diseases. Results: 93 individuals participated in 10 focus groups. Many thought researchers, sponsors, health insurers and others share obligations to facilitate PTA to the (...) trial drug, if it benefited the subject, or to a therapeutic equivalent. Some thought PTA obligations include providing transition care (referrals to non-trial physicians or other trials, limited follow-up, short-term drug supply) or care for long-term adverse events. Others held, in contrast, that there are no PTA obligations regarding drugs or care. However, there was agreement that former subjects should receive information (drug name, dosage received, market approval date, long-term adverse effects, trial results). Participants frequently appealed to health need, cost, relationships, reciprocity, free choice and sponsor self-interest to support their views. Many of their reasons overlapped with those commonly discussed by bioethicists. Conclusion: Many participants in US trials for chronic conditions thought there are obligations to facilitate PTA to the trial drug at a “fair” price; these views were less demanding than those of non-US subjects in other studies. However, our participants’ views about informational obligations were broader than those of other subjects and many bioethicists. Our results suggest that the PTA debate should expand beyond the trial drug and aggregate results. (shrink)

This paper examines older people’s access to care experiences in rural China by integrating anthropological investigation with ethical inquiry. Six months of fieldwork in a post-reform primary hospital show how rural residents struggle to access gerontological and nursing care under socially disadvantageous conditions. This anthropological investigation highlights the unmet needs in medical and nursing care for older people, as well as some social, institutional and structural elements that impede access to care. Centring on protecting the vulnerable as (...) informed by feminist ethics scholarship, this paper argues that the failure to meet older people’s dependency needs is unjust, on the premise that it suggests a denial of the inherent value, rights and dignity of older people. This paper appeals for the provision of greater care and support by the state through putting in place social arrangements that better advance older people’s access to care. Some policy recommendations concerning health and social care reform for older people in rural China are also proposed. (shrink)

As next‐generation genomic sequencing, including whole‐genome sequencing information, becomes more common in research, clinical, and public health contexts, there is a need for comprehensive communication strategies and education approaches to prepare patients and clinicians to manage this information and make informed decisions about its use, and nowhere is that imperative more pronounced than when genomic sequencing is applied to newborns. Unfortunately, in‐person counseling is unlikely to be applicable or cost‐effective when parents obtain genomic risk information directly via (...) the Internet. As a rule, communication strategies should match how people are accessing health information. Today, many people can obtain health information in a variety of settings, including through direct‐to‐consumer services, via websites, and through other digital channels or settings. In response to these changes, new communication strategies need to be considered. Adopting a comprehensive communication model means understanding the multiple levels of influence experienced by parents and the clinicians who serve them. In addition, applying communication‐science principles can help in addressing some key challenges to effectively communicating genomic information to parents. (shrink)

Researchers and sponsors are required to assist HIV prevention trial participants to remain HIV-uninfected by ensuring access to prevention services. Ethics guidelines require that these HIV risk-reduction services be state of the art. This and related ethics recommendations have been intensely debated. This descriptive study aimed to identify actual HIV prevention practices for two HIV vaccine trials at five South African sites, to explore whether actual practices meet guideline recommendations and to discuss implications for practices and ethics guidelines. Practices (...) were examined through a review of site documents and interviews with site staff and network representatives, as well as community advisory board and research ethics committee representatives. A thematic analysis of HIV prevention practices, perspectives and perceived challenges was undertaken. Findings indicated that there was a high degree of correspondence between actual practices in South African HIV vaccine trials and guideline recommendations. Key challenges for implementing prevention services were identified as partnerships, provider-promotion of services and participant uptake of services. Practices deviated most from guidelines with regard to the description of prevention plans in informed consent forms. Recommendations are made for both practices and ethics guidelines. (shrink)

ObjectivesTo determine to which degree industry partners in randomised clinical trials own the data and can constrain publication rights of academic investigators.MethodsCohort study of trial protocols, publication agreements and other documents obtained through Freedom of Information requests, for a sample of 42 trials with industry involvement approved by ethics committees in Denmark. The main outcome measures used were: proportion of trials where data was owned by the industry partner, where the investigators right to publish were constrained and if this (...) was mentioned in informed consent documents, and where the industry partner could review data while the trial was ongoing and stop the trial early.ResultsThe industry partner owned all data in 20 trials (48%) and in 16 trials (38%) it was unclear. Publication constraints were described for 30 trials (71%) and this was not communicated to trial participants in informed consent documents in any of the trials. In eight trials (19%) the industry partner could review data during the trial, for 20 trials (48%) it was unclear. The industry partner could stop the trial early without any specific reason in 23 trials (55%).ConclusionsPublication constraints are common, and data is often owned by industry partners. This is rarely communicated to trial participants. Such constraints might contribute to problems with selective outcome reporting. Patients should be fully informed about these aspects of trial conduct. (shrink)

BackgroundThe role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.MethodsWe (...) conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.ResultsBroad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.ConclusionBecause no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research. (shrink)

PurposeThe purpose of this paper is to examine the access to community telecenters and the resulting changes in people's livelihood by focusing on the gendered use of computers and the internet in two Thai CTs.Design/methodology/approachQualitative methods through participant observation and interviews of 37 respondents are privileged. The assessment of the findings in this study is made by analyzing preset indicators created and adapted from a literature review of telecenters, livelihoods, and gender.FindingsFindings suggest that livelihood changes in specific areas, with (...) a rise in self‐esteem being one of the most noticeable changes. Moreover, financial opportunities, including career enhancement and product development, have expanded as a result of accessing CTs. In regard to gender, although it is found that there is only a small difference in financial opportunity between women and men, the findings point to more positive changes for women than men in terms of health enhancement and social connectedness, while men benefit slightly more in self‐esteem and education.Originality/valueThe paper verifies the possibility of information and communication technology as a tool for enhancing the lives of people. It demonstrates that adults in a rural community can get the benefits of ICTs only if they have the opportunity to learn and have access to use. Furthermore, gender differences identified in the paper can support gender‐sensitive projects using ICT for development. (shrink)