Assess to quality diets is a basic human right. Geographical challenges and cultural traditions have contributed to the widespread malnutrition present among ethnic minorities of mountainous areas in Northwest Vietnam. Home gardens can play a role in increased diet diversity and micronutrient intakes. However, low production yields and plant diversity in ethnic home gardens have limited their contributions to household food security and nutrition. The pilot study tested a home garden intervention in weekly vegetable harvests and increasing household production and (...) consumption of diverse vegetables year-round. Food ethics issues encountered included limited access to quality food by resource-poor groups, conflicts arising from low preference and value given to some nutritious foods, limited access to information and technology for food production and consumption, each of which were addressed in the study design. The intervention includes: (1) nutrition-focused home garden training and (2) locally-adapted home garden packages consisting of garden planning, technical assistance, and high-yielding seed varieties. Twenty households from two ethnic villages in Son La province participated in the study and were randomly assigned into two groups (intervention and non-intervention). The total vegetable supply from weekly harvests of home garden produce was significantly higher in the intervention households (226 kg) compared to the non-intervention households (39 kg). The intervention group yielded 5.8 and 1.7 times more vegetables by weight and weight per area than those without the intervention. The vegetables were mainly consumed at home for both groups, but the intervention households gave more vegetables as gifts to neighbors. The intervention group cultivated a higher diversity of vegetables with a total of 42 different vegetables compared to 24 in the non-intervention group, which is reflected in an overall higher nutritional yield of vitamin A, iron, other micronutrients and phytochemicals. The home garden training significantly improved the amount, diversity and continuity of household food and nutrient supply. The home garden model is effective and could be scaled up to improve household vegetable supply and consumption, particularly in Northwest Vietnam. (shrink)

Fairness of access to assistive technology is important for its allocation on an equitable basis and for broader social justice and rights issues. Although the use of Daniels’s notion of “justice as fair opportunity” is helpful to the context of assistive technology, other aspects of Daniels’s broader conceptualisation of “just health” are not appropriate in this context. It is argued that fairness of access to assistive technology is crucial for the equitable attainment of the sustainable (...) development goals; however, such access will be achieved only by the sector developing a much stronger systems thinking and market shaping perspective. (shrink)

As assisted reproductive technologies become increasingly popular, debate has intensified over the ethical justification for restricting access to ART based on various medical and non-medical factors. In 2010, the Australian state of Victoria enacted world-first legislation that denies access to ART for all patients with certain criminal or child protection histories. Patients and their partners are identified via a compulsory police and child protection check prior to commencing ART and, if found to have a previous relevant conviction or (...) child protection order, are given a “presumption against treatment.” This article reviews the legislation and identifies arguments that may be used to justify restricting access to ART for various reasons. The arguments reviewed include limitations of reproductive rights, inheriting undesirable genetic traits, distributive justice, and the welfare of the future child. We show that none of these arguments justifies restricting access to ART in the context of past criminal history. We show that a “presumption against treatment” is an unjustified infringement on reproductive freedom and that it creates various inconsistencies in current social, medical, and legal policy. We argue that a state-enforced policy of restricting access to ART based on the non-medical factor of past criminal history is an example of unjust discrimination and cannot be ethically justified, with one important exception: in cases where ART treatment may be considered futile on the basis that the parents are not expected to raise the resulting child. (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)

Romanis has written another interesting and important paper on reproductive ethics entitled assisted gestative technologies.1 In this short commentary, I continue the discussion on the question of who should have access to AGTs. This commentary should not be understood as a critical reply but as a friendly extension of one of the paper’s themes. I am not trying to solve the question of who should have access to these technologies but I put forth some groundwork for future work. (...) Romanis calls AGTs new technologies that allow people to undertake gestation involving technological intervention—or to have another person or a device perform the reproductive and gestational labour on their behalf. People using AGTs might or might not use their own genetic material for reproduction. Romanis argues that these AGTs—such as uterus transplantation or artificial wombs—collectively raise ethical, legal and social issues that are distinct for example from assisted conception. One important question related to AGTs is who should have access to such technologies. This is crucial especially …. (shrink)

Is there any ethical justification for limiting the reproductive autonomy and not make assisted reproductive technologies available to certain prospective parents? We present and discuss the results of an interdisciplinary clinical ethics study concerning access to assisted reproductive technologies (ART) in situations which are considered as ethically problematic in France (overage or sick parents, surrogate motherhood). The study focused on the arguments that people in these situations put forward when requesting access to ART. It shows that requester’s arguments (...) are based on sound ethical values, and that their legitimacy is at least as strong as that of those used by doctors to question access to ART. Results reveal that the three implicit normative arguments that founded the law in 1994, which are still in force after the bioethics law revision in July 2011—the welfare of the child, the illegitimacy of a “right to a child,” and the defense of the so called “social order”—are challenged on several grounds by requesters as reasons for limiting their reproductive autonomy. Although these results are limited to exceptional situations, they are of special interest insofar as they give voice to the requesters’ own ethical concerns in the ongoing political debate over access to ART. (shrink)

In the name of safeguarding public interests and ethical principles, China’s National Health Commission bans unmarried women from using assisted reproductive technology (ART), including egg freezing. Supported by local governments, the ban has restricted single women’s reproductive rights nationwide. Although some courts bypassed the ban to allow widowed single women to use ART, they have not adopted a position in favour of single women’s reproductive autonomy, but quite the contrary. Faced with calls to relax the ban and allow single (...) women to freeze eggs electively, the National Health Commission refused to amend their policy, partly to protect women’s well-being paternalistically and partly to implement the central government’s policies to boost the birthrate and maintain traditional family structures. While the government’s concerns about elective egg freezing are not entirely unfounded, they have failed to demonstrate that banning single women’s egg freezing is a suitable, necessary and proportionate means to safeguard societal interests and ethical principles. The authority’s assumptions that women cannot make rational decisions for their health even with adequate informed consent procedures, that banning egg freezing by single women promotes a culture of having children ‘at a proper age’, and that egg freezing by single women offends China’s public moralities have not been substantiated. (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 the technology for ectogenesis continues to advance, the ethical implications of such developments should be thoroughly and proactively explored. The possibility of full ectogenesis remains hypothetical at present, and myriad concerns regarding the safety and efficacy of the technology must be evaluated and addressed, while pressing moral considerations should be fully deliberated. However, it is conceivable that the technology may become sufficiently well established in the future and that eventually full ectogenesis might be deemed ethically acceptable (...) as a reproductive alternative to gestation within a human womb under certain circumstances. If the safety and efficacy of full ectogenesis are established, if ethical dilemmas are sufficiently well addressed, and if the technology is offered as a reproductive option to cisgender heterosexual individuals or couples desiring to become parents, there is a moral obligation grounded in social justice to ensure that full ectogenesis be made available to individuals or couples identifying as members of sexual‐ or gender‐minority groups who likewise seek to pursue parenthood. We examine the history of access to current family‐building options, including assisted reproductive technology, surrogacy and adoption, for these populations and conclude that in the absence of robust empirical evidence suggesting an increased risk of harm to children of individuals and couples who identify as members of sexual‐ or gender‐minority groups, equitable access to ectogenesis as a pathway to parenthood for sexual and gender minorities must be assured as a matter of reproductive justice. (shrink)

We investigate the growing use of information and communication technology in Nigeria and its potential as a tool to combat the HIV/AIDS epidemic through information management. Potential applications include data gathering for research and disease tracking, knowledge sharing, and dissemination of information on research findings, prevention methods, available care and support, and patient rights. The research is based on 1450 responses to a widely distributed questionnaire.

In vitro fertilisation and other assisted reproductive technologies (ART) now enable many women to have children, who would otherwise have remained childless. The most obvious application for these technologies is to help physically infertile, but otherwise healthy young women to have children. However, increasingly, other groups are seeking access to ART to conceive, raising ethical questions about who should be allowed to use these technologies to bear children. In particular, the question of access to ART by lesbian couples (...) and single women has roused considerable ethical, legal and public debate.This paper examines the perhaps less often considered issue of older and postmenopausal women, who are infertile due to age, using ART to conceive. A range of objections have been made to allowing these women access to ART, including concerns about their ability to care for the child, the risk of birth defects and the ‘unnaturalness’ of extending childbearing capacity beyond the menopause. This paper examines these objections and provides some responses. (shrink)

In this paper we identify and evaluate arguments for and against offering assisted reproductive technologies , specifically IVF, to HIV discordant couples . The idea of offering ART to HIV discordant couples generates concerns about safety and public health and raises questions such as: what is an acceptable level of risk to offspring and should couples who want this assistance be subject to selection criteria; should they undergo scrutiny about their suitability as parents when those who are able to conceive (...) naturally face no such scrutiny and people with other illnesses are given access to ART? We conclude that offering ART to HIV discordant couples is likely to produce more benefit than harm and violates no ethical principles. Nevertheless, a decision to deny treatment need not constitute unjustified discrimination. (shrink)

Broadening access to both computational and educational resources is crit- ical to diffusing machine learning (ML) innovation. However, today, most ML resources and experts are siloed in a few countries and organizations. In this article, we describe our pedagogical approach to increasing access to applied ML through a massive open online course (MOOC) on Tiny Machine Learning (TinyML). We suggest that TinyML, applied ML on resource-constrained embedded devices, is an attractive means to widen access because TinyML leverages (...) low-cost and globally accessible hardware and encourages the development of complete, self-contained applications, from data collection to deployment. To this end, a collaboration between academia and industry produced a four part MOOC that provides application-oriented instruction on how to develop solutions using TinyML. The series is openly available on the edX MOOC platform, has no prerequisites beyond basic programming, and is designed for global learners from a variety of backgrounds. It introduces real-world applications, ML algorithms, data-set engineering, and the ethi- cal considerations of these technologies through hands-on programming and deployment of TinyML applications in both the cloud and on their own microcontrollers. To facili- tate continued learning, community building, and collaboration beyond the courses, we launched a standalone website, a forum, a chat, and an optional course-project com- petition. We also open-sourced the course materials, hoping they will inspire the next generation of ML practitioners and educators and further broaden access to cutting-edge ML technologies. (shrink)

We investigate the growing use of information and communication technology in Nigeria and its potential as a tool to combat the HIV/AIDS epidemic through information management. Potential applications include data gathering for research and disease tracking, knowledge sharing, and dissemination of information on research findings, prevention methods, available care and support, and patient rights. The research is based on 1450 responses to a widely distributed questionnaire.

Should involuntarily childless people have the sameopportunities to access parenthood as those who are not involuntarily childless? In the context of assisted reproductive technologies, affirmative answers to this question are often cashed out in terms of positive rights, including rights to third-party reproduction. In this paper, wecritically explore the scope and extent to which any such right would hold up morally. Ultimately, we argue for a departure away from positive parental rights. Instead, we argue that the state has an (...) imperfect duty to benefit involuntarily childless people in relation to their parental aspirations. (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)

In this age of information technology, it is morally imperative that equal access to information via computer systems be afforded to people with disabilities. This paper addresses the problems that computer technology poses for students with disabilities and discusses what is needed to ensure equity of access. particularly in a university environment.

Agricultural intensification and extensification are standard responses to ecological and economic vulnerability among smallholder communities. Climate change has exacerbated this vulnerability and thrown the complexity of and critical need for managing a healthy natural resource base while increasing on-farm productivity into sharp light. Sustainable intensification is one of many mechanisms for accomplishing this balancing act. This study examines the adoption of sustainable intensification practices, namely input packages focused on tef row planting—designed to boost yield and promote more efficient use of (...) inputs. This study utilized a mix methods approach to survey 115 smallholder farmers in the South Wollo zone of the Amhara region in Ethiopia. This study found that cash and capital, more so than contact with the AIS, influenced farmers’ decisions to adopt row planting input packages. Khat production was an important source of cash for inputs and was more likely to be available to farmers with irrigation schemes. Long-term, farmers who cultivate khat may not successfully engage in SI, as khat replaces traditional food crop production in the region. Yet, for farmers who do not grow khat, long-term investment in SI practices is unlikely unless access to affordable credit options is improved. (shrink)

Should involuntarily childless people have the same opportunities to access parenthood as those who are not involuntarily childless? In the context of assisted reproductive technologies, affirmative answers to this question are often cashed out in terms of positive rights, including rights to third-party reproduction. In this paper, we critically explore the scope and extent to which any such right would hold up morally. Ultimately, we argue for a departure away from positive parental rights. Instead, we argue that the state (...) has an imperfect duty to benefit involuntarily childless people in relation to their parental aspirations. (shrink)

Decisions on which new health technologies to provide are controversial because of the scarcity of healthcare resources, the competing demands of payers, providers and patients and the uncertainty of the evidence base. Given this, additional information about new health technologies is often considered valuable. One response is to make access to a new health technology conditional on further research. Access can be restricted to patients who participate in a research study, such as a randomised controlled trial; alternatively, (...) a new treatment can be made generally available, but only on condition that further evidence is collected (eg, on long-term outcomes and adverse events, in patient registries). The National Institute for Health and Clinical Excellence (NICE), which provides guidance on which new health technologies to make available under the UK's NHS, for example, has made some research conditional recommendations, and the current interest in such options suggests that they are likely to become more prevalent in the future. This paper identifies and discusses the main ethical issues created by this distinctive range of recommendations. We argue that decisions to put research conditions on access to new technologies are compatible with widely accepted values, principles and practices relevant to resource allocation. However, there are important features of these distinctive judgements that must be taken into account by resource allocation decision-making bodies and research ethics committees, and that require new sorts of empirical data. (shrink)

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 (...) class='Hi'>access for all. (shrink)

Science fiction is fast becoming reality as scientists and engineers seek to develop new ways of directly accessing and controlling our brains through brain-computer and even brain-to-brain interfaces. If such research is to receive continuing public approval and support—and not invite opposition—it must anticipate the special ethical challenges it creates. By pointing to some of the acute concerns raised by neural engineering technologies—around issues of identity, normality, authority, responsibility, privacy, and justice—Eran Klein and colleagues model and stimulate the kind of (...) reflection that will be needed as new brain technologies are developed. And yet, as I read their informative discussion, I find myself asking even more questions. One concerns the ethical novelty of these technologies. For example, in terms of questions of identity, normality, responsibility, and authority, how different is deep brain stimulation from the potent psychiatric drugs that have been administered for decades? How different in terms of issues of liability associated with malfunction or misuse are brain-computer interfaces from other complex devices now routinely in use? Neither ethics nor law will have to rethink things from scratch as new neural devices and capabilities are introduced: the groundwork for answering some of these questions has already been laid in a variety of fields from bioethics, to health and product liability law. Nevertheless, I conclude that there are new questions here. It is not simply the fact that neural technologies pose questions of identity, privacy, and the like but that they do so with a degree of intensity that creates qualitatively new challenges. (shrink)

Recent years have seen the emergence of online courts and tribunals: digital platforms that enable self-represented litigants to complete electronically the entire court process, from filing through final disposition. This article proposes that the unique nature of online courts as digital interfaces enables them to implement a new strategy—diversity by design—to improve access to justice and procedural justice for a diverse population of SRLs. Reflecting a human-centered legal design approach, and building on research in human-computer interaction and digital choice (...) architecture, this strategy entails embedding diversity accommodating features in the technological design of court platforms. Specifically, building on the empirical relationship between users’ demographic attributes and their digital usability and aesthetics judgments, this article suggests that online courts can dynamically adapt their interfaces according to the attributes of a given user in ways that help diverse SRLs engage with online courts, support their effective participation in proceedings, and improve their procedural experiences. The potential impacts include enhancing SRLs’ confidence and trust in using online courts and ameliorating their ability to process information, deliberate, make informed decisions and communicate them. Finally, the article discusses concerns regarding the desirability and ethicality of dynamically adapting, that is—personalizing, court interfaces. (shrink)

Taking people’s longevity as a measure of good life, humankind can proudly say that the average person is living a much longer life than ever before. The AIDS epidemic has however for the first time in decades stalled and in some cases even reverted this trend in a number of countries. Climate change is increasingly becoming a major challenge for food security and we can anticipate that hunger caused by crop damages will become much more common. -/- Since many of (...) the challenges humanity faced in the past were overcome by inventive solutions coming from the life sciences, we are compelled to reconsider how we incentivize science and technology development so that those in need can benefit more broadly from scientific research. There is a huge portion of the world population that is in urgent need for medicines to combat diseases that are currently neglected by the scientific community and could immensely benefit from agricultural research that specifically targets their environmental conditions. At the same time efforts have to be made to make the fruits of current and future research more widely accessible. These changes would have to be backed by a range of moral arguments to attract people with diverging notions of global justice. This article explores the main ethical theories used to demand a greater share in the benefits from scientific progress for the poor. Since life sciences bring about a number of special concerns, a short list of conflictive issues is also offered. (shrink)

In The New Eugenics: Selective Breeding in an Era of Reproductive Technologies, Judith Daar advocates for increased access to assisted reproductive technologies and minimizes concerns about the potential “eugenic logic” of some procreative choices. Although Daar’s goal of expanded access is laudable, her argument suggests an unresolved tension between the moral equality of persons and individual reproductive freedom. Exploring that tension, this paper argues that efforts to expand access to ART must still grapple with the “eugenic mentality” (...) of quality control that some forms of reproductive and genetic technologies enable. (shrink)

Digitalisation and emerging technologies affect our lives and are increasingly present in a growing number of fields. Ethical implications of the digitalisation process have therefore long been discussed by the scholars. The rapid development of artificial intelligence has taken the legal and ethical discussion to another level. There is no doubt that AI can have a positive impact on the society. The focus here, however, is on its more negative impact. This article will specifically consider how the law and ethics (...) in their interaction can be applied in a situation where a disabled person needs some kind of assistive technology to participate in the society as an equal member. This article intends to investigate whether the EU Guidelines for Trustworthy AI, as a milestone of ethics concerning technology, has the power to change the current practice of how social and economic rights are applied. The main focus of the article is the ethical requirements ‘Human agency and oversight’ and, more specifically, fundamental rights. (shrink)

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 (...) class='Hi'>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)

This Article analyzes the interaction between the burden of proof and evidentiary discovery rules. Both sets of rules can affect incentives for prospective injurers to invest in evidence technology. This interaction becomes acutely important in the private international law setting, where jurisdictions are split on the question whether the burden of proof should be treated as a substantive or procedural matter. When a tort occurs in Europe, but the case is litigated in American courts, treating the burden of proof (...) as a procedural matter preserves the complementarity of incentives created by the burden of proof and evidentiary rules. Conversely, treating the burden of proof as a substantive matter creates a mismatch in incentives created by the burden of proof and evidentiary rules. (shrink)

Controlling access to the Internet by means of filtering softwarehas become a growth industry in the U.S. and elsewhere. Its usehas increased as the mandatory response to the current plagues ofsociety, namely, pornography, violence, hate, and in general,anything seen to be unpleasant or threatening. Also of potentialconcern is the possible limitation of access to Web sites thatdiscuss drugs, without distinguishing advocacy from scientificand informed analysis of addiction. With the rise of an effectivecreationist movement dedicated to the elimination of (...) evolutionarytheory in the curriculum, it is to be expected that attempts willbe made to limit access to sites presenting such theories, incertain jurisdictions in the U.S. The current preferred method ofchoice to limit access is to filter content either by blockingaccess to specific Web sites, referred to by their URLs, or byusing a large set of keywords to prevent accessing sites thatcontain one or more of these words. Another more insidious schemeis to encourage or even require every Web site to rate itscontent along a number of dimensions, including violence,language, sexual explicitness, and nudity. Then individualbrowsers can be programmed to return references only to thosesites that fall below a pre-specified profile. The dangers forfree speech inherent in such schemes will be discussed. Effortsto produce legislation in the U.S. to mandate the use offiltering or rating programs will be described, as will somerecent court decisions involving their use in libraries. (shrink)

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)

A conceptual framework for studying the role of global health partnerships (GHPs) in determining policy practices on access to medication is presented. Although GHPs are of a practical nature, they are implicitly theory informed. The narratives used by GHP partners in relating to access to medication have theoretical origins. Building on the theoretical literature on models and the notion of embodied knowledge found in science and technology studies, GHPs are conceptualized as models that mediate between theory and (...) practice. The proposed framework can be used to investigate the role of theory in the creation of GHP models and how the models shape global and national policy practices. A social constructivist approach is suggested as a suitable method for empirical analysis. (shrink)

Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research. Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale (...) biomedical research data resources and consortia. We use a literature review of policy relevant documents which apply to the conduct of biobanks in two areas: support for open access and the protection of data subjects and researchers managing a bioresource. We present examples of decision making within a biobank based upon observations of the Generation Scotland Access Committee. We reflect upon how the drive towards open access raises ethical dilemmas for established biorepositories containing data and samples from human subjects. Despite much discussion in science policy literature about standardisation, the contextual aspects of biobanking are often overlooked. Using our engagement with GS we demonstrate the importance of local arrangements in the creation of a responsive ethical approach to biorepository governance. We argue that governance decisions regarding access to the biobank are intertwined with considerations about maintenance and viability at the local level. We show that in addition to the focus upon ever more universal and standardised practices, the local expertise gained in the management of such repositories must be supported. A commitment to open access in genomics research has found almost universal backing in science and health policy circles, but repositories of data and samples from human subjects may have to operate under managed access, to protect privacy, align with participant consent and ensure that the resource can be managed in a sustainable way. Data access committees need to be reflexive and flexible, to cope with changing technology and opportunities and threats from the wider data sharing environment. To understand these interactions also involves nurturing what is particular about the biobank in its local context. (shrink)

Abstract:Although the idea of intellectual property (IP) rights—proprietary rights to what one invents, writes, paints, composes or creates—is firmly embedded in Western thinking, these rights are now being challenged across the globe in a number of areas. This paper will focus on one of these challenges: government-sanctioned copying of patented drugs without permission or license of the patent owner in the name of national security, in health emergencies, or life-threatening epidemics. After discussing standard rights-based and utilitarian arguments defending intellectual property (...) we will present another model. IP is almost always a result of a long history of scientific or technological development and numbers of networks of creativity, not the act of a single person or a group of people at one moment in time. Thus thinking about and evaluating IP requires thinking about IP as shared rights. A network approach to IP challenges a traditional model of IP. It follows that the owner of those rights has some obligations to share that information or its outcomes. If that conclusion is applied to the distribution of antiretroviral drugs, what pharmaceutical companies are ethically required to do to increase access to these medicines in the developing world will have to be reanalyzed from a more systemic perspective. (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)

The practice of screening potential users of reproductive services is of profound social and political significance. Access screening is inconsistent with the principles of equality and self-determination, and violates individual and group human rights. Communities that strive to function in accord with those principles should not permit access screening, even screening that purports to be a benign exercise of professional discretion. Because reproductive choice is controversial, regulation by law may be required in most jurisdictions to provide effective protection (...) for reproductive rights. In Canada, for example, equal access can, and should be, guaranteed by federal regulations imposing strict conditions on the licences of fertility clinics. (shrink)

As the millennium approaches, the United States is on the verge of major health care reform. While swallowing scarce national resources, our health care system produces unenviable results and major inconsistencies. In 1992, $838.5 billion were spent on health care, biting more than 14 percent out of our gross national product. From 35 to 37 million Americans, or approximately 14 percent of the populationn, are uninsured. Our health care system is inherently inconsistent: We have the highest birthweight-specific survival rate of (...) any country in the world, yet we rank 19th worldwide in infant mortality rate, i.e., state-of-the-art medical technology allows us to save a 500-gram infant, yet the mother of that infant may not have had access to basic, minimal prenatal care. (shrink)

As the millennium approaches, the United States is on the verge of major health care reform. While swallowing scarce national resources, our health care system produces unenviable results and major inconsistencies. In 1992, $838.5 billion were spent on health care, biting more than 14 percent out of our gross national product. From 35 to 37 million Americans, or approximately 14 percent of the populationn, are uninsured. Our health care system is inherently inconsistent: We have the highest birthweight-specific survival rate of (...) any country in the world, yet we rank 19th worldwide in infant mortality rate, i.e., state-of-the-art medical technology allows us to save a 500-gram infant, yet the mother of that infant may not have had access to basic, minimal prenatal care. (shrink)

Assistive technology has great potential to contribute to health, functioning, and quality of life. To date, as exemplified in the Canadian context, variations and inequities in access to assistive technology are evident; the development of legislation, policies, and programs has not kept up with the increasing use of assistive technology. In this article, we apply ;Daniels’s (2008) theory of just health to argue that equitable access to assistive technology funding and services is necessary for (...) justice. In doing so, we offer theoretical guidance for the development of legislation, policies, and programs to guide such access in health and social services. (shrink)

In a context of rapid technological innovation and expensive new products, the paper calls for the generation of real-world data to inform decision-making and an international discussion on the affordability of new medicines, particularly for low- and middle-income countries. Without these, the challenges of health judicialization will continue to grow.

The collection and dissemination of data on human and nonhuman organisms has become a central feature of 21st-century biology and has been endorsed by funding agencies in the United States and Europe as crucial to translating biological research into therapeutic and agricultural innovation. Large molecular data sets, often referred to as “big data,” are increasingly incorporated into digital databases, many of which are freely accessible online. These data have come to be seen as resources that play a key role in (...) mediating global market exchange, thus achieving a prominent social and economic status well beyond science itself. At the same time, calls to make all such data publicly and freely available have garnered strength and visibility, most prominently in the form of the Open Data movement. I discuss these developments by considering the conditions under which data journey across the communities and institutions implicated in globalized biology and biomedicine, and what this indicates about how Internet-based communication and the use of online databases affect scientific research and its role within contemporary society. (shrink)

Carson Strong's article “Cloning and Infertility” has initiated a conversation in this journal about the ethical and policy issues surrounding the question of who, if anyone, should be allowed access to human reproductive cloning technology, should somatic cell nuclear transfer ever become technically feasible and safe. Strong's position in that article is that infertile opposite sex couples for whom cloning is the last resort for having a genetically related child are the only people who should be granted (...) class='Hi'>access to such technology, primarily because this need to have a genetically related child would give such couples respectable reasons for cloning themselves. Also, every child has a basic right to a “decent minimum opportunity for development.” Thus it would be morally wrong, other things being equal, to clone a person with cystic fibrosis or spina bifida but morally permissible to clone a nearsighted person, because nearsightedness is not sufficiently disabling to violate the child's birthright. With this caveat, he concludes that protecting reproductive freedom requires that physicians be allowed to provide cloning services only to that small subset of infertile opposite sex couples who would need it as a last resort, should human reproductive cloning ever become safe and feasible. (shrink)

In the debates surrounding the ethical dimensions of interventions in the human genome, much attention is paid to determining whether—and if so, how—market access to these technologies ought to be managed in order to maximize social benefit. There are those who advocate a “laissez-faire” free-market approach to the development and use of genetic and genomic interventions. We are sympathetic to this view insofar as we understand the workings of the market stimulus effect. We use the term “market stimulus effect” (...) to refer to the outcome of a set of mechanisms whereby early adoption of a new technology by wealthy consumers promotes the development of versions of this product that are cheaper to produce, or are simply .. (shrink)

Floridi’s work, although diverse and multifaceted, portrays a solid coherence across his different lines of work. Among his wealth of interests and results, we highlight his recent work on information logics, on the ethics of information technology, and his rigorous (and vigorous) philosophical analysis of recent technological trends and developments in information technology. In the present article we illustrate, by means of some connecting arguments, the diversity and coherence of Floridi’s work. We also show how his work, although (...) fundamentally philosophical in nature, can be used to build solid foundations for scientific and entrepreneurial endeavours of higher quality. More specifically, we discuss how the combination of results from the three lines of work referred to above can be used as ground for the organisation of higher quality programmes to augment the capabilities and effectiveness of governmental systems through information and communications technology, a trend that has been explored in many nations and that has been coined Electronic Government. Electronic Government programmes that improve the capabilities of citizens to interact with each other and with governments, as well as the capabilities of governments to listen to the needs and aspirations of citizens, have the potential to contribute to the construction of more democratic states. Electronic Government systems that rely on ready made models to prescribe to citizens how best they should interact with each other and with the public administration are, however, by construction non-democratic. Hence, it can be a moral and ethical matter for governments to choose which line of technological development they take. (shrink)

This paper discusses current clinical applications and possible future uses of brain-computer interfaces as a means for communication, motor control and entertainment. After giving a brief account of the various approaches to direct brain-computer interaction, the paper will address individual, social and ethical implications of BCI technology to extract signals from the brain. These include reflections on medical and psychosocial benefits and risks, user control, informed consent, autonomy and privacy as well as ethical and social issues implicated in putative (...) future developments with focus on human self-understanding and the idea of man. BCI use which involves direct interrelation and mutual interdependence between human brains and technical devices raises anthropological questions concerning self-perception and the technicalization of the human body. (shrink)

PurposeInternational organizations are working on an unprecedented number of development initiatives relevant to people with disabilities. This makes it essential for the global disability community to be able to participate effectively in the decision-making processes associated with these programs. In light of this, this study aims to explore whether information technologies can help create a more inclusive global governance, forming the basis for equitable development for people with disabilities.Design/methodology/approachThe results of a global survey of disabled people’s organizations’ leaders are discussed. (...) This asked disability rights advocates about their experiences with accessibility and barriers to effective participation, low-cost accessible technological solutions for remote participation and freely available “off-the-shelf” online technologies – in particular social media platforms – to bridge the gap between the disability community and global governance processes.FindingsAlthough only a small number of international conferences offer accessible virtual participation through web conferencing and other tools, responses from DPO advocates suggest that there is a strong demand for this technology and provide evidence of its potential for improving accessibility in global governance. Furthermore, disability organizations all over the world have embraced social media platforms to liaise with their grassroots and enable them to part-take in policy-making processes.Originality/valueThis study highlights community-backed technological solutions to persisting barriers that systematically exclude people with disabilities from fundamental global governance processes, illuminating the nexus of disability, accessibility, and participation. (shrink)

In Australia and other countries, certain groups of women have traditionally been denied access to assisted reproductive technologies . These typically are single heterosexual women, lesbians, poor women, and those whose ability to rear children is questioned, particularly women with certain disabilities or who are older. The arguments used to justify selection of women for ARTs are most often based on issues such as scarcity of resources, and absence of infertility , or on social concerns: that it “goes against (...) nature”; particular women might not make good mothers; unconventional families are not socially acceptable; or that children of older mothers might be orphaned at an early age. The social, medical, legal, and ethical reasoning that has traditionally promoted this lack of equity in access to ARTs, and whether the criteria used for client deselection are ethically appropriate in any particular case, are explored by this review. In addition, the issues of distribution and just “gatekeeping” practices associated with these sensitive medical services are examined. (shrink)