Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect’s DNA with DNA from a suspect’s distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA (...) data has been performed in over 200 criminal investigations. However, this practice of so-called investigative genetic genealogy raises ethical concerns. In this paper, we aim to broaden the bioethical analysis on IGG by showing the limitations of an individual-based model. We discuss two concerns central in the debate: privacy and informed consent. However, we argue that IGG raises pressing ethical concerns that extend beyond these individual-focused issues. The very nature of the genetic information entails that relatives may also be affected by the individual customer’s choices. In this respect, we explore to what extent the ethical approach in the biomedical genetic context on consent and consequences for relatives can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The ethical debate is further complicated by the international, transgenerational and commercial nature of IGG. We conclude that IGG should not only be approached as an individual but also—and perhaps primarily—as a collective issue. There are no data in this work. (shrink)

In July 2020, the H3Africa Ethics and Community Engagement (E&CE) Working Group organised a webinar with ethics committee members and biomedical researchers from various African institutions throughout the Continent to discuss the issue of whether and how biological samples for scientific research may be accessed by commercial entities when broad consents obtained for the samples are silent. 128 people including Research Ethics Committee members (10), H3Africa researchers (46) including members of the E&CE working group, biomedical researchers not associated with (...) H3Africa (27), representatives from the National Institutes of Health (16) and 10 other participants attended the webinar and shared their views. Several major themes emerged during the webinar, with the topics of broad versus explicit informed consent, defining commercial use, legacy samples and benefit sharing prevailing in the discussion. This report describes the consensus concerns and recommendations raised during the meeting and will be informative for future research on ethical considerations for genomic research in the African research context. (shrink)

This article argues that the decision by the Columbian high court to totally ban the advertising and promotion of tobacco products is sound and could indeed be applied to other types of harmful products.

As a neo-liberal economy, India has become one of the new health tourism destinations, with commercial gestational surrogacy as an expanding market. Yet the Indian Assisted Reproductive Technology Bill has been pending for five years, and the guidelines issued by the Indian Council of Medical Research are somewhat vague and contradictory, resulting in self-regulated practices of fertility clinics. This paper broadly looks at clinical ethics in reproduction in the practice of surrogacy and decision-making in various procedures. Through empirical research (...) in New Delhi, the capital of India, from December 2011 to November 2012, issues of decision-making on embryo transfer, fetal reduction, and mode of delivery were identified. Interviews were carried out with doctors in eighteen ART clinics, agents from four agencies, and fourteen surrogates. In aiming to fulfil the commissioning parents’ demands, doctors were willing to go to the greatest extent possible in their medical practice. Autonomy and decision-making regarding choice of the number of embryos to transfer and the mode of delivery lay neither with commissioning parents nor surrogate mothers but mostly with doctors. In order to ensure higher success rates, surrogates faced the risk of multiple pregnancy and fetal reduction with little information regarding the risks involved. In the globalized market of commercial surrogacy in India, and with clinics compromising on ethics, there is an urgent need for formulation of regulative law for the clinical practice and maintenance of principles of reproductive ethics in order to ensure that the interests of surrogate mothers are safeguarded. (shrink)

We begin by a summary of the standardized version of the model of the interaction between scientific activities and values (elaborated fully in Lacey and Mariconda, 2015), and based on it we argue that there is a profound incoherence in the self- understanding of the modern scientific tradition, and that the main options actually available to ensure continuity with the positive realizations of this tradition can be well represented by two sorts of ideal types that we name, respectively,“commercially orientated technoscience” (...) and “multi-strategic research”. Then, in the light of the predominance that commercially oriented technoscience has gained in contemporary scientific institutions, we argue for the importance of developing multi-strategic research in areas such as agriculture. This is needed so that adequate evaluation of the potential risks of large scale applications of technoscience, as well as harm they may have actually occasioned, can be made; and also so that these applications can be rigorously compared with scientifically informed practices, such as agroecology, which are not as problematic for human health and the environment and which explore the regenerative powers of nature itself. (shrink)

Over recent years, considerable attention has been paid to the National Health Service research governance and ethics approvals process in the UK. New regulations mean that approval from the Medicines and Healthcare Products Regulatory Agency is now also needed for conducting all clinical trials. Practical experience of gaining MHRA and sponsorship approval has yet to be described and critically explored in the literature. Our experience, from start to finish, of applying for these four approvals for a multicentre randomised controlled trial (...) of two licensed drugs for opiate detoxification in the prison setting is described here. In addition, the implications of the approvals process for research projects, particularly clinical trials, in terms of time and funding, and also indirect implications for NHS patients are discussed. Inconsistencies are discussed and suggestions that could improve and streamline the overall process are made. The current approvals process could now be hindering non-commercial clinical trials, leading to a loss of important evidence-based medical information. (shrink)

Proposed changes to the Common Rule would require publicly funded researchers to disclose whether a subject's biospecimens could be used for commercial profit and whether the subject will share in those proceeds. Disclosing commercial interests will inform research participants that their tissue may have commercial value, a possibility that those individuals might not have previously considered. The proposed changes may then provide people with an opportunity to negotiate commercial rights in their biospecimens despite the well-accepted legal (...) precedent that individuals maintain no interests in their excised tissue. (shrink)

After the commercialisation of induced pluripotent stem cells (IPSCs) in 2007, the pressure to commercialise women's eggs for stem cell research could have been expected to lessen. However, the pressure to harvest human eggs in large quantities for research has not diminished; rather, it has taken different directions, for example, in germline mitochondrial research. Yet there has been little acknowledgement of these technologies' need for human eggs, the possible risks to women and the ethical issues concerning potential exploitation. Rather, there (...) has been a renewed campaign to legalise payment for eggs in research, although the actual scientific advances are at best modest. This article shows why a market in women's eggs is ethically problematic in terms of the doctor's duty to do no harm and the limitations of informed consent. (shrink)

Heath services come with the promise of confidentiality.1 The ethical mandate to safeguard the confidentiality of personal health information aligns with legal mandates to do the same. Numerous state and federal laws demand one form of health data confidentiality or another, best illustrated by the Health Insurance Portability and Accountability Act.2 In early 2011, the Department of Health and Human Services decided to take a tougher stand against HIPAA violators, utilizing powers created by the Health Information Technology for Economic and (...) Clinical Health Act.3 Ushering in a new era, the U.S. Department of Health and Human Services imposed an unprecedented civil penalty of $4.3 million on Cignet Health of .. (shrink)

The fact that Internet companies may record our personal data and track our online behavior for commercial or political purpose has emphasized aspects related to online privacy. This has also led to the development of search engines that promise no tracking and privacy. Search engines also have a major role in spreading low-quality health information such as that of anti-vaccine websites. This study investigates the relationship between search engines’ approach to privacy and the scientific quality of the information they (...) return. We analyzed the first 30 webpages returned searching “vaccines autism” in English, Spanish, Italian, and French. The results show that not only “alternative” search engines but also other commercial engines often return more anti-vaccine pages (10–53%) than Google (0%). Some localized versions of Google, however, returned more anti-vaccine webpages (up to 10%) than Google. Health information returned by search engines has an impact on public health and, specifically, in the acceptance of vaccines. The issue of information quality when seeking information for making health-related decisions also impact the ethical aspect represented by the right to an informed consent. Our study suggests that designing a search engine that is privacy savvy and avoids issues with filter bubbles that can result from user-tracking is necessary but insufficient; instead, mechanisms should be developed to test search engines from the perspective of information quality (particularly for health-related webpages) before they can be deemed trustworthy providers of public health information. (shrink)

BackgroundResearch using data from medical care promises to advance medical science and improve healthcare. Academia is not the only sector that expects such research to be of great benefit. The research-based health industry is also interested in so-called ‘real-world’ health data to develop new drugs, medical technologies or data-based health applications. While access to medical data is handled very differently in different countries, and some empirical data suggest people are uncomfortable with the idea of companies accessing health information, this paper (...) aims to advance the ethical debate about secondary use of medical data generated in the public healthcare sector by for-profit companies for medical research (ReuseForPro).MethodsWe first clarify some basic concepts and our ethical-normative approach, then discuss and ethically evaluate potential claims and interests of relevant stakeholders: patients as data subjects in the public healthcare system, for-profit companies, the public, and physicians and their healthcare institutions. Finally, we address the tensions between legitimate claims of different stakeholders in order to suggest conditions that might ensure ethically sound ReuseForPro.ResultsWe conclude that there are good reasons to grant for-profit companies access to medical data if they meet certain conditions: among others they need to respect patients’ informational rights and their actions need to be compatible with the public’s interest in health benefit from ReuseForPro. (shrink)

Concern about the commercialization of research is rising, notably in testing new drugs. The problem involves oversimplified, polarizing assumptions about research and development (R&D) and intellectual property (IP). To address this problem this paper sets forth a more complex three phase RT&D process, involving Scientific Research (R), Technological Innovation (T), and Commercial Product Development (D) or the RT&D process. Scientific research and innovation testing involve costly intellectual work and do not produce free goods, but rather require IP regulation. RT&D (...) processes involve an unrecognized IP shift from a common IP right in public goods like information and knowledge to private IP in products and other hard assets. The question then is, what kind of IP right: private or common? Since scientific research and innovation testing require openness about adverse findings, and wide, low cost diffusion of results, they require a common, inclusive IP right. Common IP is appropriate to both sharing knowledge goods and recovering the cost of production. Research is furthermore compatible with commercialization and support by other social interests. On the other hand it is incompatible with the exclusionary private IP rights that permit restrictive publication or total suppression of information. Private IP rather than commercialization conflicts with the openness requirements of scientific research and innovation testing. Commercial funding, however, is in principle compatible with research and testing, especially when regulated by a common IP right. This reflects a pragmatic view of the fundamental interconnections of knowledge and other social interests. (shrink)

This paper is an exploration of a current environmental issue dividing two industries in the UK. The issue is offshore wind farms, and the industries are commercial fishing and wind energy. The controversy over offshore wind farms highlights three core issues of conflict: the adequacy of stakeholder consultation processes; the right to compensation for loss of livelihood; and the lack of adequate data. We find that the characterisations that developers, regulators, and fishers hold of each other critically inform their (...) positions on these issues. We examine the weak bargaining position of fishers, and the 'power game' that is played out between them and developers. We conclude that offshore wind farm development would be better managed if stakeholder consultation was more extensive, compensation claims were standardised, and scientific data were more readily available, but that in the meantime, fishers could improve their bargaining power by mobilising potential allies. (shrink)

This article provides an ISCT analysis of commercial bribery focused on transaction cost economics. In the language of Antitrust, commercial bribery is a form of vertical arrangement subject to the same efficiency analysis that has found other vertical arrangements potentially beneficial to consumers. My analysis shows that actions condemned as commerical bribery in the Honda case (1996) may well have benefited Honda's dealer network once promotional free riding and other forms of rent seeking by dealers are considered. I (...) propose that the term "commercial bribery" should be avoided until after an ISCT analysis shows that the community is likely to have been harmed. The term "third-party payments" is a more ethically neutral term with which to begin the analysis. (shrink)

Decisions by industry sponsors to end clinical trials early for commercial reasons have been the subject of controversy. I argue that the principal consideration in assessing these decisions ought to be the way in which the termination would affect the trial’s risk–benefit relationship. If there is not yet sufficient benefit to be gained from the study to offset the risks to which participants were exposed and it is expected that important scientific information would be obtained if the trial were (...) continued, early termination constitutes an unethical alteration of the risk−benefit relationship. This violates the grounds on which permission is given to conduct human research, patients consent to participate, and investigators agree to conduct studies. These knowable and avoidable changes in risk–benefit relationship should generally be seen as impermissible. (shrink)

People enroll in medical research for many reasons ranging from decisions regarding their own or family members' health situation to broader considerations including access to health and financial resources. In socially vulnerable communities the choice to participate is often based on a risk-benefit assessment that goes beyond the medical aspects of the research, and considers the benefits received. In this qualitative study, we examined the motivations of Rwandan women to participate in a non-commercial collaborative research study examining the safety, (...) acceptability, and adherence of a contraceptive vaginal ring in Rwanda juxtaposed with the perceptions of the research within the community. 351 women attended the screening visit, four were excluded because they were not able to complete the assessment of understanding. The remaining participants' ages ranged from 17 to 38 and 80% had primary level of education or below. 120 were enrolled. Findings highlighted motivations for joining the study that were relayed both formally by the clinic and informally by the community including the positive aspects of the ring. There were also some negative rumors circulating regarding the research site, likely from excluded participants who faced potential stigma based on that exclusion. It was understood by most participants that they were enrolled in a research study and participants actively sought out enrollment in the research for a variety of reasons. The experiences demonstrate that although inequalities in access to health care may create conflicting situations around the study, it is possible to form partnerships between a research center and participants/their partners, for research about reproductive health. (shrink)

This paper is an exploration of a current environmental issue dividing two industries in the UK. The issue is offshore wind farms, and the industries are commercial fishing and wind energy. The controversy over offshore wind farms highlights three core issues of conflict: the adequacy of stakeholder consultation processes; the right to compensation for loss of livelihood; and the lack of adequate data. We find that the characterisations that developers, regulators, and fishers hold of each other critically inform their (...) positions on these issues. We examine the weak bargaining position of fishers, and the ‘power game’ that is played out between them and developers. We conclude that offshore wind farm development would be better managed if stakeholder consultation was more extensive, compensation claims were standardised, and scientific data were more readily available, but that in the meantime, fishers could improve their bargaining power by mobilising potential allies. (shrink)

There is widespread anxiety about the commercialisation and commodification of human tissue. The aims of this paper are: (a) to analyse some of these concerns, and (b) to see whether some of the main ethical arguments that lie behind them are sound. Part 1 looks at 'inducement arguments' against paying individuals for their tissue and concludes that these are generally quite weak. Part 2 examines some ethical objections to third parties (e.g. biotechnology companies and researchers) commercially exploiting human tissue. Firstly, (...) it is argued that prospective tissue donors should be given very full information about the extent to which their tissues will be commercially exploited and about the financial interests of tissue collectors and researchers, since this is an essential component of valid consent. Secondly, some doubt is cast upon the (widely held) view that while 'the human body and its parts shall not, as such, give rise to financial gain', intellectual property based on human tissue research is generally acceptable1. (shrink)

Recent research suggests that collectivism breeds corruption in bank lending. This finding, together with the stickiness of culture, poses a direct challenge to economic growth in collectivist societies. In this paper, we address this grim outlook by examining the types of firms that are susceptible to the detrimental effect of collectivism on lending integrity and the formal institutions that can help alleviate such effect. We find that the adverse effect of collectivism on bank corruption is more severe in small and (...) medium-sized firms, privately owned firms, and non-exporting firms, while it is considerably weaker in countries with more effective private monitoring, a higher fraction of foreign-owned banks, a more competitive banking sector, better information sharing, and stronger legal and political institutions. Our findings are robust to using alternative measures of collectivism and alternative dependent variables. These results highlight how firm-level characteristics and formal institutions interact with collectivism in affecting firms’ access to bank credit. (shrink)

Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

In “Toward an Ontology of Commercial Exchange” [11], we proposed human readable definitions for terms that are central to an ontology of commercial exchange. This paper furthers that project in two ways. First, the definitions have been modified to be compatible with the Common Core Ontologies (CCO). CCO is used in a wide variety of domains including the industrial and military domains. Having a commerce ontology compatible with CCO allows data about the exchange of goods relevant to those (...) domains to be tagged with compatible ontologies. Second, we propose preliminary formalizations of these definitions, with the aim of informing the creation of an ontology which can be used to assist in reasoning over businessrelated data. (shrink)

PurposeFacebook users are both producers and consumers, in the sense that they produce the disclosures that allow for Facebook's business success and they consume services. The purpose of this paper is to examine how best to characterize the commercialized and compliant members. The authors question the Facebook assertion that members knowingly and willingly approve of personal and commercial transparency and argue, instead, that complicity is engineered.Design/methodology/approachA survey of Facebook users was conducted between December 2010 and April 2011 at one (...) private and four public universities. Respondents were questioned about: the level of their consumer activity on Facebook; their knowledge of Facebook advertiser data sharing practices and their attitude toward such; their use of sharing restrictions and the groups targeted; and their assessment of transparency benefits versus reputation and consumer risks.FindingsNo evidence was found to support the Facebook account of happy prosumers. Members reported that they avoided advertisements as much as possible and opposed data sharing/selling practices. However, many respondents were found to be relatively uneducated and passive prosumers, and those expressing a high concern for privacy were no exception.Research limitations/implicationsDue to the nonprobability sampling method, the results may lack generalizability.Practical implicationsTo avoid unwanted commercialization, users of social networking sites must become more aware of data mining and privacy protocols, demand more protections, or switch to more prosumer‐friendly platforms.Originality/valueThe paper reports empirical findings on Facebook members' prosumption patterns and attitudes. (shrink)

In studies investigating the property value enhancements along metro lines, study ranges in most cases are measured in Euclidean distance. However, city roads are not always straight, and Euclidean distance sometimes does not equal to actual distance the passenger travels from the public transport station to their home or a commercial spot. To solve this problem, this study analyzed the indicators affecting commercial property value in metro station accessible area in Xi’an, using walking time consumption in measuring the (...) study range. Following a conceptual framework, considering empirical evidences in related studies, information in city structure, and metro distribution, the initial indicator set is built. Using hedonic price model, spatial autoregressive model, and error term, significant indicators affecting commercial property value are investigated. In this study, 14 significant indicators are determined and quantified. Threshold distance equals to 900 m is found to be appropriate in addressing the autocorrelation problem with the weighted decision matrix tool. Compared to HPM and SEM, SAR is found to perform the best in evaluating the significant indicators with the largest R2 and the lowest Akaike Info Criterion. Besides, it is discovered that the value of the commercial property lies in the study range of 20 min walking time and is obviously influenced by the metro station. The results discovered in this study could provide some empirical evidences to commercial property planning in Xi’an. (shrink)

This article tells, in academic terms, the story of a famous Romanian TV ad: the one where two men throw a priest from a tower mistaking him for the famous Batman movie character and hoping he would fly. As expected, this spot gave rise to a lot of discussion and debates over the years. But this is not the main reason that recommends it for this type of analysis. The most interesting aspect about this spot is the fact that although (...) it was subsequently censored and it was aired on TV only for one day, it is still incredibly popular and it still receives important awards at various advertising festivals. Besides its popularity, this TV commercial is bringing forward very important aspects regarding the interesting relation between orthodox religious symbols and advertising. In the first section of my article I shall focus on the way profane media myths are responsible for framing the social reality. The second section consists in an empirical research conducted on first-year students enrolled in a communication and public relation program. The main objective is to determine some of the reasons that make this commercial so attractive despite its offensive script. The last section of this article consists in an analysis of the reasons why the mainstream Christian faith is being replaced by magical thinking and irrational beliefs in the magical power of the brands. (shrink)

Wearable and mobile technology has advanced in leaps and bounds in the last decade with technological advances creating a role from enhancing healthy living to monitoring and treating disease. However, the discussion about the ethical use of such commercial technology in the community, especially in minors, is lacking behind. In this paper, we first summarize the major ethical concerns that arise from the usage of commercially available wearable technology in children, with a focus on smart watches, highlighting issues around (...) the consent process, mitigation of risk and potential confidentiality and privacy issues, as well as the potential for therapeutic misconceptions when used without medical advice. Then through a relevant thought experiment we move on to outline some further ethical concerns that are connected to the use of wearables by minors, to wit the issue of informed consent in the case of minors, forcing them to live in the spotlight, and compromising their right to an open future. We conclude with the view that mitigating potential pitfalls and enhancing the benefits of wearable technology especially for minors requires brave and comprehensive moral debates. (shrink)

Computer-based design environments for skilled domain workers have recently graduated from research prototypes to commercial products, supporting the learning of individual designers. Such systems do not, however, adequately support the collaborative nature of work or the evolution of knowledge within communities of practice. If innovation is to be supported within collaborative efforts, thesedomain-oriented design environments (DODEs) must be extended to becomecollaborative information environments (CIEs), capable of providing effective community memories for managing information and learning within constantly evolving collaborative contexts. (...) In particular, CIEs must provide functionality that facilitates the construction of new knowledge and the shared understanding necessary to use this knowledge effectively within communities of practice. (shrink)

This work fulfills the need for a conceptual and technical framework to improve understanding of Information Quality (IQ) and Information Quality standards. The meaning and practical implementation of IQ are addressed, as it is relevant to any field where there is a need to handle data and issues such as accessibility, accuracy, completeness, currency, integrity, reliability, timeliness, usability, the role of metrics and so forth are all a part of Information Quality. -/- In order to support the cross-fertilization of theory (...) and practice, the latest research is presented in this book. The perspectives of experts from beyond the origins of IQ in computer science are included: library and information science practitioners and academics, philosophers of information, of engineering and technology, and of science are all contributors to this volume. -/- The chapters in this volume are based on the work of a collaborative research project involving the Arts and Humanities Research Council and Google and led by Professor Luciano Floridi, University of Oxford. -/- This work will be of interest to anyone handling data, including those from commercial, public, governmental and academic organizations. The expert editors’ contributions introduce issues of interest to scientists, database curators and philosophers, even though the issues may be disguised in the language and examples common to a different discipline. (shrink)

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial (...) gain”. Similarly, Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (shrink)

There is substantial published evidence showing that countless people enroll each year in ethically deficient clinical trials. Many of the trials are problematic because the quality of the science used to justify their launch may not be sufficiently vetted while many other trials may lack requisite social value. This poses the question: why do people volunteer for them? The answer resides in large part in the fact that informed consent practices have historically masked, rather than disclosed, the information that would (...) alert research candidates to the ethically problematic nature of the trials. The “reasonable person” and “key information” provisions in the revised US Common Rule create the opportunity to correct this historical shortcoming. Two sources are employed to shed light on what the “key information” is that should be disclosed to a “reasonable person”: the original disclosure aims of the Nuremberg Code, as well as an extensive body of meta-research evidence. Those sources jointly support a range of new disclosures in the informed consent process that would unmask the heretofore undisclosed information. The resulting proposed new disclosures pertain to the overall success prospects of clinical trials, the quality of the prior research that both forms the basis of clinical trials and informs assessment of their risks and benefits, the potential social value of clinical trials, and the commercial purposes of clinical trials. (shrink)

Should a growing market for genetic self-tests be welcomed or feared? From the point of view of personal autonomy the increasing availability of predictive health information seems promising. Yet it is frequently pointed out that genetic information about future health may cause anxiety, distress and even loss of “life-hopes.” In this article the argument that genetic self-tests undermine personal autonomy is assessed and criticized. I contend that opportunities for autonomous choice are not reduced by genetic information but by misperceptions and (...) misunderstandings of the results of genetic tests. Since the interpretation of genetic information is sometimes distorted by the information provided about the genetic products, more attention should be given to deceitful marketing that overblows the utility of genetic products. Yet personal autonomy is reduced neither by genetic tests nor by genetic information and there is consequently no compelling case for the conclusion that genetic self-tests should be prohibited. (shrink)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

We analyse the contention that privacy is an alien concept within Japanese society, put forward in various presentations of Japanese cultural norms at least as far back as Benedict in The chrysanthemum and the sword: patterns of Japanese culture. Houghton Mifflin, Boston, 1946. In this paper we distinguish between information privacy and physical privacy. As we show, there is good evidence for social norms of limits on the sharing and use of personal information (i.e. information privacy) from traditional interactions in (...) Japanese society, as well as constitutional evidence from the late 19th century (in the Meiji Constitution of 1889). In this context the growing awareness of the Japanese public about problems with networked information processing by public sector and commercial organisations from the 1980s (when a law governing public sector use of personal information was first passed) to recent years (when that law was updated and a first law governing commercial use of personal information was adopted) are not the imposition or adoption of foreign practices nor solely an attempt to lead Japanese society into coherence with the rest of the OECD. Instead they are drawing on the experience of the rest of the developed world in developing legal responses to the breakdown of social norms governing interchange and use of personal information, stressed by the architectural changes wrought by networked information processing capabilities. This claim is supported by consideration of standard models of Japanese social interactions as well as of Supreme Court judgements declaring reasonable expectations of protection of privacy to hold in Japan. (shrink)

People enroll in medical research for many reasons ranging from decisions regarding their own or family members' health situation to broader considerations including access to health and financial resources. In socially vulnerable communities the choice to participate is often based on a risk‐benefit assessment that goes beyond the medical aspects of the research, and considers the benefits received. In this qualitative study, we examined the motivations of Rwandan women to participate in a non‐commercial collaborative research study examining the safety, (...) acceptability, and adherence of a contraceptive vaginal ring in Rwanda juxtaposed with the perceptions of the research within the community. 351 women attended the screening visit, four were excluded because they were not able to complete the assessment of understanding. The remaining participants' ages ranged from 17 to 38 and 80% had primary level of education or below. 120 were enrolled. Findings highlighted motivations for joining the study that were relayed both formally by the clinic (e.g. testing and treatment) and informally by the community including the positive aspects of the ring. There were also some negative rumors circulating regarding the research site, likely from excluded participants who faced potential stigma based on that exclusion. It was understood by most participants that they were enrolled in a research study and participants actively sought out enrollment in the research for a variety of reasons. The experiences demonstrate that although inequalities in access to health care may create conflicting situations around the study, it is possible to form partnerships between a research center and participants/their partners, for research about reproductive health. (shrink)

This is a paper about trust, with a specific focus on the ways in which trust is investigated in the business literature and the commercial sector. The lens through which the topic is approached is distinctively philosophical. We use philosophical tools to demonstrate the paucity of some of the accounts of trust that are given in the business and management literature, as well as the empirically informed literature that has flowed from them. We close with a discussion of some (...) work on trust drawn from the commercial sector that would, as we shall demonstrate, benefit from a clearer understanding of the nature of trust. We take this to be important. Trust is a key moral and ethical component of transactional relationships. Without a clear understanding of the notion, we will be missing a central concept in our attempts to understand the commercial world that we inhabit. The paper proceeds in four parts. In the first part of the paper we introduce some reasonably standard philosophical distinctions between different kinds of trust, as well as saying a little more about our methods. In the second, we demonstrate that a reasonably widely held account of trust in the business and management literature fails to capture the nuance reflected by the philosophical literature. On the basis of this, in the third section, we suggest that various pieces of empirical work require reassessment. In the final part of the paper we explore some non-academic discussions of trust drawn from the commercial sector arguing that, there too, we require a more precise understanding of trust. In short, though, our overarching argument is simply this: if we can give a more precise analysis of trust, it follows that both our empirical research and current commercial activity can be improved. (shrink)

It is a feature of scientific inquiry that it proceeds alongside a multitude of non-scientific interests. This statement is as true of the scientific inquiries of previous centuries, many of which brought scientists into conflict with institutionalised religious thinking, as it is true of the scientific inquiries of today, which are conducted increasingly within commercial and political contexts. However, while the fact of the coexistence of scientific and non-scientific interests has changed little over time, what has changed with time (...) is the effect of this coexistence on scientific inquiry itself. While scientists may no longer construct their theories with various religious dictates in mind, growing commercial and political interests in science have served to distort the interpretation of science. Using the U.K.’s recent crisis with bovine spongiform encephalopathy (BSE) as my context, I examine two ways in which this distortion has occurred – the interpretation of the science of BSE by politicians and by commercial parties for the purposes of justifying policy decisions and informing the public of risk, respectively. Fallacious reasoning, I contend, is the manifestation of this distortion in these contexts. In demonstration of this claim, I examine how politicians and commercial parties alike have employed two fallacies in their assessments of the science of BSE. These fallacies extend in novel ways the set of so-called traditional informal fallacies. The interpretation of science, I conclude, is a rich context in which to conduct a study of fallacious reasoning; moreover, such a study can contribute in significant ways, I argue, to the public understanding of science. (shrink)

The term information has become a universal and omnipresent keyword in almost all areas of our modern world—be it in science or society in general. This is not only obvious from the naming of whole scientific branches like Information Theory, Information Science or Informatics but even more from common speaking—characterising our present time and society as information age viz. information society. However, what information might mean, is by no means clear and there is a wide range of interpretations covering, among (...) others, its technical, communicational, educational, mental, and scientific aspects. But is the use of the same term justified when adopted in Biology, Physics, Archaeology, Law, Communication Technology, and Informatics (to list just a few of the involved scientific branches) or do its different uses at least have some common characteristics—some sort of common denominator? Is information natural, e.g. manifesting itself as a material phenomenon residing in organisms, stars, atoms, or genes, or is it just a cultural product of human communication, thinking, and interpretation? In this article, we try to clarify some of the most important interpretations, discuss and contrast them with the Informatics point of view. Interpretations range from taking information as material, transferable signals (following Shannon’s Information Theory or the genetic approaches), treating it as a sign (following a semiotic approach), as a commercial product (now common in Web-based Information Business) to considering it a pure mental phenomenon bound to humans or human-like individuals or even to groups and societies. Based on these interpretations, we shall throw a critical glance on current trends in human science and society—focusing on the now popular concept of information society —and then derive some theses and guidelines for further research escorting the growth and dispersal of information technology. As it will turn out, an information society which defines itself through the number of computers, internet connections and network links is based on a very narrow, techno-centric concept of information. However, a reflection on the educational and cultural aspects of information might lead to a better-qualified society consisting of responsible and critical citizens. (shrink)

Many transgender people need specific medical services to affirm their gender. Gender-affirming health care services may include mental health support, hormone therapy, and reconstructive surgeries. Scant information is available about the utilization or costs of these services among transgender people, which hinders the ability of insurance regulators, health plans, and other health care organizations to plan and budget for the health care needs of this population and to ensure that transgender people can access medically necessary gender-affirming care. This study used (...) almost three decades of commercial insurance claims from a proprietary database containing data on more than 200 million people to identify temporal trends in the provision of gender-affirming hormone therapy and surgeries and to quantify the costs of these services. (shrink)

Designed to be a high-level, approachable resource for engineers who need further insight into spatial temporal information systems from an ontological perspective, Spatial Temporal Information Systems: An Ontological Approach using STK® explains the dynamics of objects interaction from signal analysis to trajectory design, spatial modeling, and other spatial analytics by using STK®, which is a general-purpose modeling and analysis application for any type of space, defense, or intelligence system. Building a foundation to begin the study of spatial temporal information systems, (...) the book details a form of analysis that is a powerful tool for modeling, engineering, and operations of space, cyberspace, satellites, missile defense, and electronic systems. It discusses the many applications of space technologies by using a mission-proven software for timely and cost-effective development that serves public interests in civil, commercial, academic, national, and international space communities. Written for readers with a background in physics or engineering, the book is also designed for the beginning analyst sitting behind a desk who needs more information on STK. Upon reading this book, STK new users and power users will not only understand what the tools are, but also how the software can be used to make their job easier. In addition, satellite operators and analysts benefit from the ability to utilize a variety of propagators satellite applications. Analytics, semi-analytic and numerical integrators are discussed, including Keplerian orbital elements and full numerical integration of STK’s High Precision Orbit Propagation or simplified as a two-body analysis. This tool, as well as this book, will bring breadth and depth to the understanding of systems dynamics and the ontology of objects in relationship to other objects and vehicles including central bodies. (shrink)

Television commercials are often thought of as bothersome multimedia artefacts that by their very existence spoil our viewing pleasure at regular intervals. Not only that, but they seem to have the habit of ordering us around. This aspect of TV ads has often been commented on by experts and laypersons alike. Therefore, we decided to tackle this issue and look at the prototypical expression of directives, that is, imperatives in voice-overs in television commercials. To this end we have carried out (...) an empirical analysis of imperatives in voice-overs in the MATVA corpus which contains transcriptions of nearly 800 voice-overs in British TV ads recorded on six days during 2009, 2010 and 2011. We provide an exhaustive quantitative and qualitative profile of imperatives in contemporary TV advertising. This includes information on the distribution of imperatives, the most common verbs in imperative clauses, and their discourse function. We are also able to show conclusively that the directive force of imperatives in TV ads is more akin to advice or recommendation than commands, and explain from a discourse-pragmatic perspective why this is so. (shrink)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole‐genome sequencing and micro‐array based analysis enable genome‐wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre‐test information and achieving autonomous decision‐making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so‐called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set‐up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set‐up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct‐to‐consumer applications of the new genetics. (shrink)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole-genome sequencing and micro-array based analysis enable genome-wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre-test information and achieving autonomous decision-making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so-called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set-up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set-up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct-to-consumer applications of the new genetics. (shrink)

Objectives—The development of predictive genetic tests provides a new area where consumers can gain knowledge of their health status and commercial opportunities. “Over-the-counter” or mail order genetic tests are most likely to provide information on carrier status or the risk of developing a multifactorial disease. The paper considers the social and ethical implications of individuals purchasing genetic tests and whether genetic information is different from other types of health information which individuals can obtain for themselves.Design—The discussion is illustrated by (...) findings from a questionnaire survey of university students as potential consumers. Topics covered included what health tests they had already used, expectations of genetic tests, willingness to pay, who should have access to the results and whether there need to be restrictions on such tests.Sample—Six hundred and fifteen first-year students in the universities of Leuven, Cardiff, Central Lancashire, Vienna and Nijmegen studying either medicine or a non-science subject.Results—Students were enthusiastic about genetic tests and had high expectations of their accuracy and usefulness but most thought they should be available through the health service and a minority thought that some tests, for example for sex selection, should not be available at all. There were few differences in responses by sex or subject of study but some by country. The paper also considers ethical and social issues outside the scope of a questionnaire survey of this type.Conclusion—To address some of these issues the sale of genetic tests to individuals can be made subject to ethical guidelines or codes of practice, for example to protect vulnerable groups, but there are fundamental social and ethical questions which such guidelines cannot address. (shrink)

Despite concerns about the relationships between health professionals and the medical device industry, the issue has received relatively little attention. Prevalence data are lacking; however, qualitative and survey research suggest device industry representatives, who are commonly present in clinical settings, play a key role in these relationships. Representatives, who are technical product specialists and not necessarily medically trained, may attend surgeries on a daily basis and be available to health professionals 24 hours a day, 7 days a week, to provide (...) advice. However, device representatives have a dual role: functioning as commissioned sales representatives at the same time as providing advice on approaches to treatment. This duality raises the concern that clinical decision-making may be unduly influenced by commercial imperatives. In this paper, we identify three key ethical concerns raised by the relationship between device representatives and health professionals: impacts on healthcare costs, the outsourcing of expertise and issues of accountability and informed consent. These ethical concerns can be addressed in part through clarifying the boundary between the support and sales aspects of the roles of device representatives and developing clear guidelines for device representatives providing support in clinical spaces. We suggest several policy options including hospital provision of expert support, formalising clinician conduct to eschew receipt of meals and payments from industry and establishing device registries. (shrink)

In Western Kenya, smallholder dairy production is becoming incrementally commercialized through the commodification and sale of milk through formal market channels. While commercialization is often construed as a way to boost rural livelihoods through increased income from milk, emerging evidence suggests that married women are not directly benefiting from formal milk market participation. This critical issue of gender power imbalance has been framed by development interventions in economic efficiency and social justice perspectives, but thus far interventions in the sector have (...) not addressed how underlying social-market mechanisms embedded in gendered ideology influence smallholder engagement in dairy commercialization. Drawing on feminist theories of power and social embeddedness, this study investigates how gendered power relationships materialize and influence formal milk marketing engagement and practices in Western Kenya. Facilitated discussion groups with smallholder farmers revealed the gendered ideologies and norms that ascribe masculinized meaning to cattle, milk, and commercial enterprise. Key informant interviews with commercial dairy management and farmers were used to identify current practices for increasing women’s formal market participation—namely, direct payments to women for milk deliveries. Findings from this study indicate that cattle and formal dairy market participation are imbued with gendered meaning that create legitimacy around men’s privilege over dairy proceeds. Interventions in the sector aimed at addressing gender power imbalances must acknowledge this dynamic, and accept the social trade-offs and gendered costs of dairy commercialization. (shrink)

Ongoing research in the fields of genetics and biotechnology hold the promise of improved diagnosis and treatment of genetic diseases, and potentially the development of individually tailored pharmaceuticals and gene therapies. Difficulty, however, arises in determining how these services are to be evaluated and integrated equitably into public health care systems such as Canada's. The current context is one of increasing fiscal restraint on the part of governments, limited financial resources being dedicated to health care, and rising costs for new (...) health care services and technologies. This has led to increasing public debate in the last few years about how to reform public health care, and whether we should prohibit, permit or perhaps even encourage private purchase of health care services. ;In Canada, some of these concerns have crystallized around the issue of gene patents and commercial genetic testing, in particular as illustrated by the case of Myriad Genetics' patented BRACAnalysis test for hereditary breast and ovarian cancer. While most Canadians who currently access genetic services do so through the public health care system, for those with the means, private purchase is becoming an option. This situation raises serious concerns---about justice in access to health care; about continued access to safe and reliable genetic testing supported by unbiased patient information; and about the broader effects of commercialization for ongoing research and the Canadian public health care system. Commercial genetic testing presents a challenge to health care professionals, policy analysts, and academics concerned with the social, ethical and policy implications of new genetic technologies. Using the Myriad case as an exemplar, tools from moral philosophy, the social sciences, and health policy and law will be brought to bear on the larger issues of how as a society we should regulate commercial research and product development, and more coherently decide which services to cover under public health insurance and which to leave to private purchase. Generally, the thesis is concerned with the question of "how best to bring capital, morality, and knowledge into a productive and ethical relationship". (shrink)

This study aims to look at the role of the practice of excellence strategies in education in achieving sustainable competitive advantage for the Higher educational institutions of the faculty of Engineering and Information Technology at Al-Azhar University in Gaza, a model, and the study considered the competitive advantage of educational institutions stems from the impact on the level of each student, employee, and the institution. The study was based on the premise that the development of strategies for excellence in education, (...) and its implementation is a vital important prerequisite to achieve sustainable competitive advantage in higher educational institutions. The study followed a systematic exploratory descriptive methodology through review of the theoretical literature, and the adoption of the experience of the Faculty of Engineering and Information Technology at Al-Azhar University in Gaza as a model for its unique experience in the field of excellence in education. The study results showed that the most important are: There is a strong correlation between the level of exercising excellence strategies in education and the achievement of higher educational institutions to the sustainable competitive advantage. The results include a general required number of important sub results on the subject of the model - Faculty of Engineering and Information Technology at Al-Azhar University in Gaza as follows: - The student considered the academic focus of the operation in the development process of the workers’ skills, particularly academics at the university helps to distinguish students and increase the employment rate after graduation. - The existence of consistency in development efforts and quality improvement for all three levels (student, employee, and the university), and this contributes to the Faculty excellence. - The Faculty has been able to achieve competitive advantages by offering excellent services without harming the efficiency, and this alone is a great success because improving service properties requires great investments, which negatively affect the continued institutional development. The study also reached a set of recommendations as follows: - The need to exercise excellence strategies in education, excellence reward at the national level, and those higher educational institutions follow the criteria for measuring the competitive advantages of its institutions always. - There is a need to increase efforts to implement programs of excellence, the allocation of adequate time, reward outstanding efforts as well. There is a necessity for each faculty to achieve competitive advantage and sustainability, using the general philosophies of competitive advantage, but with a different strategically content from what is in the private commercial sector, it reflects the Faculties mission and objectives, depending on making improvements and excellence in processes that ensure the safety of its outputs. As well as the need to find a balance between the work of teaching and research work of the faculty members, this has important implications regarding the criteria used in the process of excellence evaluation. The study recommended the adoption of strategies for excellence in education on a national public policy level mainly in the processes of change in higher education institutions. The need to support the existence of a common understanding of the efforts of excellence to create a general culture that appreciates excellence in faculties and universities. This underlines the need for transparent, fair rewards systems, to encourage innovation in education. The need to conduct a comprehensive surveys on the graduates of faculties and universities including the areas of employment and skills, because that will give accurate indications of the graduates and will help to establish a link to a more precise about the relationship of excellence strategies with the competitive advantages. (shrink)

Objectives—The development of predictive genetic tests provides a new area where consumers can gain knowledge of their health status and commercial opportunities. “Over-the-counter” or mail order genetic tests are most likely to provide information on carrier status or the risk of developing a multifactorial disease. The paper considers the social and ethical implications of individuals purchasing genetic tests and whether genetic information is different from other types of health information which individuals can obtain for themselves.Design—The discussion is illustrated by (...) findings from a questionnaire survey of university students as potential consumers. Topics covered included what health tests they had already used, expectations of genetic tests, willingness to pay, who should have access to the results and whether there need to be restrictions on such tests.Sample—Six hundred and fifteen first-year students in the universities of Leuven, Cardiff, Central Lancashire, Vienna and Nijmegen studying either medicine or a non-science subject.Results—Students were enthusiastic about genetic tests and had high expectations of their accuracy and usefulness but most thought they should be available through the health service and a minority thought that some tests, for example for sex selection, should not be available at all. There were few differences in responses by sex or subject of study but some by country. The paper also considers ethical and social issues outside the scope of a questionnaire survey of this type.Conclusion—To address some of these issues the sale of genetic tests to individuals can be made subject to ethical guidelines or codes of practice, for example to protect vulnerable groups, but there are fundamental social and ethical questions which such guidelines cannot address. (shrink)

The global demand for information has brought in new developments in the publicity of discursive practices of many professional areas. This study takes the professional practice of International Commercial Arbitration, a mechanism to resolve business disputes outside the courts and traditionally considered as private, to explore the process of resemiotization of information, from the strategies used by corporations in their press releases to the news reports published by national and international media. It takes the theoretical concept of interdiscursivity in (...) critical genre analysis to show that texts are the result of a combination of a very complex range of resources brought about by genres, professional practices and professional cultures, which derive not only from the ‘local’ representation of the transnational arbitration process, but also from the different corporate identities and their ways of coping with the increasing publicity of the facts of arbitration. (shrink)

Genetic research presents ethical challenges to the achievement of valid informed consent, especially in developing countries with areas of low literacy. During the last several years, a number of genetic research proposals involving Omani nationals were submitted to the Department of Research and Studies, Ministry of Health, Oman.The objective of this paper is to report on the results of an internal quality assurance initiative to determine the extent of the information being provided in genetic research informed consent forms. In order (...) to achieve this, we developed checklists to assess the inclusion of basic elements of informed consent as well as elements related to the collection and future storage of biological samples. Three of the authors independently evaluated and reached consensus on seven informed consent forms that were available for review.Of the seven consent forms, four had less than half of the basic elements of informed consent. None contained any information regarding whether genetic information relevant to health would be disclosed, whether participants may share in commercial products, the extent of confidentiality protections, and the inclusion of additional consent forms for future storage and use of tissue samples. Information regarding genetic risks and withdrawal of samples were rarely mentioned (1/7), whereas limits on future use of samples were mentioned in 3 of 7 consent forms.Ultimately, consent forms are not likely to address key issues regarding genetic research that have been recommended by research ethics guidelines. We recommend enhanced educational efforts to increase awareness, on the part of researchers, of information that should be included in consent forms. (shrink)