In this article we explore how the experience of searching for Online Health Information becomes a meaningful activity in the lives of older adults living with chronic health conditions. A descriptive phenomenological approach was adopted to contribute to the overall understanding of individuals’ lived experiences of OHI-seeking through an exploration of the consciousness of the experiencer. This article provides rich experiential descriptions that have the potential to make a contribution toward healthcare practice within the UK by (...) providing healthcare professionals with an understanding of patient experience that can help them identify patients’ needs and make improvements to care in terms of the quality of empathy and understanding for older adults with chronic health conditions. The findings also provide rich stories of older adults actively engaging in this form of health information seeking, data that could be used to challenge pre-conceptions that age is a barrier to using the Internet for this purpose. (shrink)

Disease-related challenges are often associated with perceived uncertainties in individuals, triggering attempts to cope with the situation. Our study aims to understand patients’ coping strategies regarding health information-seeking behaviors (HISBs). It is guided by the Uncertainty Management Theory, and seeks to grant insights into multi-channel HISB by describing how uses of interpersonal and media channels interact to cope with uncertainties, and how trust influences the process of multi-channel HISB. Patients diagnosed with osteoarthrosis (N = 34) participated in (...) qualitative semi-structured interviews, from which five patterns of multi-channel HISB, ranging from a focus on the physician to a focus on the internet, were identified. These patterns are distinguished by underlying functions of trust – including trust serving as an additional coping strategy, and as an important influencing factor for perceiving information as meaningful – and by whether information needs remain and patients turn to multiple sources. These findings form the basis for further theory development considering the iterative nature of HISB and the role of trust. (shrink)

Protecting the privacy of individually-identifiable health data and promoting the public’s health often seem at odds. Privacy advocates consistently seek to limit the acquisition, use, and disclosure of identifiable health information in governmental and private sector settings. Their concerns relate to misuses or wrongful disclosures of sensitive health data that can lead to discrimination and stigmatization against individuals. Public health practitioners, on the other hand, seek regular, ongoing access to and use of identifiable (...) class='Hi'>health information to accomplish important public health objectives. The collection and use of identifiable health data by federal, tribal, state, and local health authorities support nearly all public health functions and goals.Identifiable health data are the lifeblood of public health practice. When aggregated, these data help authorities monitor the incidence, patterns, and trends of injury and disease in populations. Health data are acquired by public health authorities through testing, screening, and treatment programs. (shrink)

Protecting the privacy of individually-identifiable health data and promoting the public’s health often seem at odds. Privacy advocates consistently seek to limit the acquisition, use, and disclosure of identifiable health information in governmental and private sector settings. Their concerns relate to misuses or wrongful disclosures of sensitive health data that can lead to discrimination and stigmatization against individuals. Public health practitioners, on the other hand, seek regular, ongoing access to and use of identifiable (...) class='Hi'>health information to accomplish important public health objectives. The collection and use of identifiable health data by federal, tribal, state, and local health authorities support nearly all public health functions and goals.Identifiable health data are the lifeblood of public health practice. When aggregated, these data help authorities monitor the incidence, patterns, and trends of injury and disease in populations. Health data are acquired by public health authorities through testing, screening, and treatment programs. (shrink)

Simonet, Emanuel Nicolas Cortes The Internet has made seeking for health information easy and convenient. This information provides medical knowledge which has the potential to empower both patients and health professionals. However, It is concerning that patients may attempt to use this type of information for self-diagnostic purposes, particularly those who are unfamiliar with medical terminology. Understanding web- based information effectively is most important to enable appropriate and informed healthcare decisions. Consequently, a new (...) role for health professionals is indicated, requiring them to become familiar with the health information available on the Internet, to direct patients to reliable sources, and to assist them in understanding and interpreting web-based health information. (shrink)

Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National Health Service , and (...) ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued. (shrink)

In this paper I provide a critique of a set of assumptions relating to agency, choice and the legitimacy of actions impacting health that can be seen in some approaches to health promotion. After a brief discussion about the definition of health promotion, I outline two contrasting approaches to this area of health care practice. The first is focused on the provision of information and the second is concerned with seeking to change people’s preferences (...) in a particular way. It has been argued by a number of critics of health promotion that only the first approach is ethical, as it is for individuals to make their own lifestyle choices and adopt their own conception of the good life. I argue against this ‘information’ approach to health promotion on two grounds. First, I suggest that given the aims of health promotion, the provision of information is, as a matter of fact, of limited effectiveness in achieving these aims. Second, I argue that we have good reasons to question the appropriateness of respecting many of the preferences that individuals happen to have, given the origins and quality of such preferences. I then go on to argue, that by contrast we have good reasons to focus on changing at least some of the preferences that people have related to their lifestyle choices. This involves a commitment to both paternalism and a defence of a certain conception of the good life, but both can be defended. I use the example of potential responses to the growing problem of obesity to illustrate my argument, arguing that only policy that, at least sometimes, aims at preference change will be both effective and ethical. (shrink)

Obtaining ‘informed consent’ from every individual participant involved in health research is a mandatory ethical practice. Informed consent is a process whereby potential participants are genuinely informed about their role, risk and rights before they are enrolled in the study. Thus, ethics committees in most countries require ‘informed consent form’ as part of an ethics application which is reviewed before granting research ethics approval. Despite a significant increase in health research activity in low-and middle-income countries in recent years, (...) only limited work has been done to address ethical concerns. Most ethics committees in LMICs lack the authority and/or the capacity to monitor research in the field. This is important since not all research, particularly in LMICs region, complies with ethical principles, sometimes this is inadvertently or due to a lack of awareness of their importance in assuring proper research governance. With several examples from Nepal, this paper reflects on the steps required to obtain informed consents and highlights some of the major challenges and barriers to seeking informed consent from research participants. At the end of this paper, we also offer some recommendations around how can we can promote and implement optimal informed consent taking process. We believe that paper is useful for researchers and members of ethical review boards in highlighting key issues around informed consent. (shrink)

Findings about the desire for health-risk information are heterogeneous and sometimes contradictory. In particular, they seem to be at variance with established psychological theories of information-seeking behavior.The present paper posits the decision about treating illness with medicine as the causal determinant for the expected net value of information, and attempts to explain idiosyncrasies in information-seeking behavior by using the notion of decision sensitivity to incoming information.Furthermore, active information avoidance is explained by (...) modeling the expected emotional distress potentially brought about by “bad news” as a disutility factor in pay-off maximization.In this context two notions of uncertainty are distinguished: an epistemic uncertainty related to the prognostic probability assigned to the risk, and an emotional uncertainty related to the expected damage. Health-risk information can both reduce epistemic and increase emotional uncertainty, giving rise to idiosyncratic processing strategies. (shrink)

The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe that, even (...) though collateral data disclosure and additional activity monitoring appears to have been generally socially accepted as inevitable consequences of the pandemic, part and parcel of a larger conglomeration of emergency compromises, these increased surveillance practices were not directly justified by appeals to solidarity and public health in the same way that the instigating public health measures were. Based on this observation, and given the increased reliance on private actors for maintaining the digital space, we argue that governments have a duty to (i) seek and ensure that there are justifications for collateral data disclosure and activity monitoring by private actors in the context of (future) public health emergencies like the COVID-19 pandemic, and (ii) regulate and provide accountability mechanisms for and oversight over these private surveillance practices on par with governmental essential services that engage in surveillance activities. (shrink)

Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad (...) consent to data sharing in January 2016. Between February and August 2017 qualitative data were collected at two sites, Bangkok and the Thai-Myanmar border town of Mae Sot. We conducted eighteen semi-structured interviews. We also conducted four focus group discussions with a total of nineteen people. Descriptive and thematic coding informed analysis of aspects of data sharing that are considered most important to inform participants about, and the best ways to explain complex and abstract topics relating to data sharing. The findings demonstrated that clinical trial participants prioritise information about the potential benefits and harms of data sharing. Stakeholders made multiple suggestions for clarifying information provided about data sharing on such topics. There was significant variation amongst stakeholders’ perspectives about how much information should be provided about data sharing, and it was clear that effective information provision should be responsive to the study, the study population, the individual research participant and the research context. Effectively communicating about data sharing with research participants is challenging in practice, highlighting the importance of robust and effective data sharing governance in this context. Broad consent should incorporate effective and efficient explanations of data sharing to promote informed decision-making, without impeding research participants’ understandings of key aspects of the research from which data will be shared. Further work is required to refine both the development of core information about data sharing to be provided to all research participants, and appropriate solutions for context specific-challenges arising when explaining data sharing. (shrink)

People seeking asylum are at risk of receiving poorer quality healthcare due, in part, to racist and discriminatory attitudes, behaviours and policies in the health system. Despite fleeing war and conflict; exposure to torture and traumatic events and living with uncertainty; people seeking asylum are at high‐risk of experiencing long‐term poor physical and mental health outcomes in their host country. This article aims to raise awareness and bring attention to some common issues people seeking asylum (...) face when seeking healthcare in high‐income countries where the health system is dominated by a Western biomedical view of health. Clinical case scenarios are used to highlight instances of racist healthcare policies and practices that create and maintain ongoing health disparities; limited access to culturally and linguistically appropriate health services, and lack of trauma‐informed approaches to care. Nurses and midwives can play an important role in countering racism in healthcare settings; by identifying and calling out discriminatory practice and modelling tolerance, respect and empathy in daily practice. We present recommendations for individuals, organisations and governments that can inform changes to policies and practices that will reduce racism and improve health equity for people seeking asylum. (shrink)

Informed consent is a vital part of ethical research. In emergency health care research environments such as ambulance services and emergency departments, it is sometimes necessary to conduct trial interventions or observations without patient consent. At times where treatment is time critical, it may be impossible or inappropriate to seek consent from next of kin. Emergency medicine is one of the few areas where the process of informed consent can be waived to allow research to proceed without patient consent. (...) This article will explore the ethics of informed consent in the prehospital emergency research context. This will include an overview of current Australian guidelines for ethical research, and recent changes in law internationally which have affected the conduct of international emergency health research. An overview of the ethical reasoning behind the waiver of informed consent in emergency research is presented, also addressing issues relating to emergency health research such as proxy consent, unconscious patients, and patient decision making capacity. The unusual circumstances encountered in the prehospital ambulance environment will also be discussed, including the dependent and coercive relationship between patients and ambulance professionals, and a lack of alternatives for care and transport for patients who refuse consent. The conflict arising from differences in medical culture and values between patients and health care professionals will also briefly be discussed. It will be argued that, while emergency care research should not require informed consent due to the restrictions of time and dependent nature of the relationship between patient and health professional, emergency health researchers still have a responsibility to consider the patients’ perspective when considering the ethical issues of an emergency research project, particularly in the prehospital environment. (shrink)

Computer-based information and communication technologies continue to transform the delivery of health care and the conception and scientific understanding of the human body and the diseases that afflict it. While information technology has the potential to improve the quality and efficiency of patient care, it also raises important ethical and social issues. This IRIE theme issue seeks to provide a forum to identify, analyse and discuss the ethical and social issues raised by various applications of information (...) and communication technology in medicine and health care. The contributions give a flavour of the extraordinarily broad landscape shaped by the intersection of medicine, computing and ethics. In fact, their diversity suggests that much more work is needed to clarify issues and approaches, and to provide practical tools for clinicians. (shrink)

This article reviews key philosophical and legal underpinnings of mental health professionals' obligation to obtain informed consent from consumers of their services. The basic components of informed consent are described, and strategies for clinically and ethically appropriate methods of obtaining informed consent are discussed. Emerging issues in informed consent involving duty to assess and protect against client dangerousness, obligations to third parties, and issues of deception are considered as well. The article proposes that part of the process of obtaining (...) informed consent is the cultivation of a treatment environment that emphasizes beneficence and client autonomy. (shrink)

Background Denmark has implemented a comprehensive, nationwide pharmaceutical information system, and this system has been evaluated by the Danish Council of Ethics. The system can be seen as an exemplar of a comprehensive health information system for clinical use. Analysis The paper analyses 1) how informed consent can be implemented in the system and how different implementations create different impacts on autonomy and control of information, and 2) arguments directed towards justifying not seeking informed consent (...) in this context. Results and Conclusion Based on the analysis a heuristic is provided which enables a ranking and estimation of the impact on autonomy and control of information of different options for consent to entry of data into the system and use of data from the system. The danger of routinisation of consent is identified. The Danish pharmaceutical information system raises issues in relation to autonomy and control of information, issues that will also occur in relation to other similar comprehensive health information systems. Some of these issues are well understood and their impact can be judged using the heuristic which is provided. More research is, however needed in relation to routinisation of consent. (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 (...) class='Hi'>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)

This cross sectional study was carried out among the workers of British American Tobacco Company, Dhaka with a view to explore their nutritional status, personal hygiene and health seeking behavior as because they are working on a tobacco processing company. The sample size was 179 which were selected purposively. The study showed that out of 179 respondents 89 (49.7%) were in the age groups of 30-39 years and the mean age of the respondents were 31.99 ± 6.01 years. (...) A large number of respondents (55.9%) had monthly family income of Taka 10001-20000 and the mean family income was Taka 12776.54 ± 5230.13. Maximum respondents (73.7%) were Muslim, more than half (54.2%) were shift in charge, 39.1% of the respondents consisted of 4 family members, 43.6% respondents were accustomed to other type of eating habit and 38.5% respondents knew that malnutrition was the effect of lack of proper nutrition, 59.8% of the respondents knew that night blindness was the disease due to malnutrition, most of the respondents (91.6%) performed duties to maintain health, majority (62.0%) respondents used to do nothing to maintain healthcare for their children and 35.9% visited doctor’s single time in a month, 40.2% of the respondents told regular tooth brushing as type of healthy habits. Majority (64.8%) respondents used to brush twice a day, majority (50.8%) respondents used to wash hand after toileting, majority (62.08%) respondents used to bath daily, 43.0% and 31.8% of the respondents told that dysentery and diarrhea was due to eating without proper hand washing respectively. Majority (53.6%) respondents informed that they learned about personal hygiene from television, 45.8% respondents understood that use of safe water in every work as sanitation. Majority (50.84%) came from nuclear family; most (84.92%) had exercise habit and 40.22% had education level of class VIII. Most (75.42%) of the respondents had semi pucca houses and majority (69.83%) of the respondents used only water as materials for hand washing. This study provided some important information which might help the concerned authority to take appropriate measures to improve the health status of the workers. (shrink)

Non-Invasive Prenatal Testing is a technology which provides information about fetal genetic characteristics very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women’s social and ethical values. We approach the need for ethical policy-making by (...) studying the use of NIPT and emerging policy in the province of Ontario, Canada. Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area. (shrink)

In recent years, the growing academic field called “Data Science” has made many promises. On closer inspection, relatively few of these promises have come to fruition. A critique of Data Science from the phenomenological tradition can take many forms. This paper addresses the promise of “participation” in Data Science, taking inspiration from Paul Majkut’s 2000 work in Glimpse, “Empathy’s Impostor: Interactivity and Intersubjectivity,” and some insights from Heidegger’s "The Question Concerning Technology." The description of Data Science provided in the scholarly (...) literature includes “the study of the generalizable extraction of knowledge from data” (Dhar 2013, 64), “data stewardship and data sharing…access to data at higher volumes and more quickly, and the potential for replication and augmentation of existing research” (Hartter et al., 2013, 1), and “personal information, health status, daily activities and shopping preferences that are recorded and used to give us instant feedback and recommendations based on previous online behavior.” (Shin 2013) United States universities have begun to offer graduate programs in “data science”, anticipating the growth of this field for marketing, national security, and health industries. These universities include New York University, Columbia University, Stanford, Northwestern, and Syracuse. (shrink)

Health promotion efforts are commonly directed towards encouraging people to discard ‘unhealthy’ and adopt ‘healthy’ behaviours in order to tackle chronic disease. Typical targets for behaviour change interventions include diet, physical activity, smoking and alcohol consumption, sometimes described as ‘lifestyle behaviours.’ In this paper, I discuss how efforts to raise awareness of the impact of lifestyles on health, in seeking to communicate the need for people to change their behaviour, can contribute to a climate of ‘healthism’ and (...) promote the moralisation of people’s lifestyles. I begin by summarising recent trends in health promotion and introducing the notion of healthism, as described by Robert Crawford in the 1980s. One aspect of healthism is moralisation, which I outline and suggest is facilitated by efforts to promote health via information provision and educational strategies. I propose that perceived responsibility plays a role in mediating the tendency to moralise about health and behaviour. Since I argue that states ought to avoid direct and indirect moralisation of people’s health-related behaviour, this suggests states must be cautious with regard to the use of responsibility-indicating interventions to promote health. (shrink)

A great deal has been written about information that is or should be provided when seeking consent to medical research and treatment. Relatively little attention has been paid to information describing health promotion interventions. This paper critically examines some information material describing three different methods of encouraging early presentation of breast cancer in the UK: the NHS breast screening programme, breast self examination, and breast awareness. Findings from a content analysis of printed material and a (...) series of focus group discussions that included women who speak little or no English were organised around the Department of Health’s recommendations about the information which should be provided when seeking consent to treatment and research. They exposed inconsistencies, ambiguities, and gaps, which when taken together suggest both compliance and non-compliance are being achieved in the absence of informed consent. The findings also provide a starting point for a discussion about how informed consent to health promotion might be sought. (shrink)

Information and computer technology has come to play an increasingly important role in medicine, to the extent that e-health has been described as a disruptive innovation or revolution in healthcare. The attention is very much focused on the technology itself, and advances that have been made in genetics and biology. This leads to the question: What is changing in medicine today concerning e-health? To what degree could these changes be characterized as a ‘revolution’? We will apply the (...) work of Thomas Kuhn, Larry Laudan, Michel Foucault and other philosophers—which offers an alternative understanding of progress and revolution in medicine to the classic discovery-oriented approach—to our analysis. Nowadays, the long-standing curative or reactive paradigm in medicine is facing a crisis due to an aging population, a significant increase in chronic diseases and the development of more expensive diagnostic tools and therapies. This promotes the evolution towards a new paradigm with an emphasis on preventive medicine. E-health constitutes an essential part of this new paradigm that seeks to solve the challenges presented by an aging population, skyrocketing costs and so forth. Our approach changes the focus from the technology itself toward the underlying paradigm shift in medicine. We will discuss the relevance of this approach by applying it to the surge in digital self-tracking through health apps and wearables: the recognition of the underlying paradigm shift leads to a more comprehensive understanding of self-tracking than a solely discovery-oriented or technology-focused view can provide. (shrink)

A major issue facing the health of both minors and young adults in the United States is the often unintentional lack of confidentiality maintained in the provision of sensitive health services. Studies have shown that access to confidential care is crucial for minors seeking preventive care and treatment for sensitive services. Evidence demonstrates that many minors will not seek health care if confidentiality cannot be ensured, which can have significant negative health implications; this finding can (...) be extended to young adults covered under their parents health plans. Young adults, not just minors, also often forgo important sensitive services when they face a breach of confidentiality, which most likely occurs when their parents have access to the adult child's health information.Currently, private insurance companies generally send the policyholder an explanation of benefits whenever a service is provided under a plan. EOBs generally include information identifying the patient, provider, type of care received, total charge for services, amount paid by the insurance company, and any financial obligation of the policyholder. (shrink)

Members of the lay public are turning increasingly to the internet to answer health-related questions. Some authors suggest that the widespread availability of online health information has dislodged medical knowledge from its traditional institutional base and enabled a growing role for alternative or previously unrecognized health perspectives and ‘lay health expertise’. Others have argued, however, that the organization of information retrieved from influential search engines, particularly Google, has merely intensified mainstream perspectives because of the (...) growing consolidation of the internet with traditional, commercial media sources. In this paper we describe an analysis of ‘first page’ results retrieved through Google searches about several common health concerns, each of which has been the subject of controversy as a result of uncertain aetiology, diagnoses, outcomes and/or contested approaches to treatment. Our findings suggest that the online search tactics used by most lay health information seekers produce sources of information that, for the most part, reflect mainstream biomedical discourses, often linked to commercial interests, rather than a plurality of voices that offer a variety of perspectives and resources. We discuss the implications for health-interested internet searchers who fail to look beyond the ‘first page’. (shrink)

Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative (...) methods including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results: MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research.Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions: It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections.Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important. (shrink)

Millions of Americans access the Internet forhealth information, which is changing the waypatients seek information about, and oftentreat, certain medical conditions. It isestimated that there may be as many as 100,000health-related Web sites. Theavailability of so much health informationpermits consumers to assume more responsibilityfor their own health care. At the same time,it raises a number of issues that need to beaddressed. The health information available toInternet users may be inaccurate orout-of-date. Potential conflicts of interestresult (...) from the blurring of the distinctionbetween advertising and professional healthinformation. Also, potential threats to privacymay result from data mining. Health care consumers need to be able toevaluate the quality of the informationprovided on the Internet. Various evaluativemechanisms such as codes of ethics, ratingsystems, and seals of approval have beendeveloped to aid in this process. Theeffectiveness of these solutions is evaluated inthis paper. Finally, the paper addresses theimportance of including patients in developingstandardized quality assurance systems for online health information. (shrink)

“HTA is a multidisciplinary process that summarizes information about the medical, social, economic and ethical issues related to the use of a health technology in a systematic, transparent, unbiased, robust manner. Its aim is to inform the formulation of safe, effective, health policies that are patient focused, and seek to achieve best value” (EUnetHTA 2007). Even though the assessment of ethical aspects of a health technology is listed as one of the objectives of a HTA process, (...) in practice, the integration of these dimensions into reports remains limited. The article is focused on four points: 1. the HTA concept; 2. the difficult HTA-ethics relationship; 3. the ethical issues in HTA; 4. the methods for integrating ethical analysis into HTA. (shrink)

Simulated standardized patients (SPs) are trained individuals who pose incognito as people seeking treatment in a health care setting. With the method’s increasing use and popularity, we propose some standards to adapt the method to contextual considerations of feasibility, and we discuss current issues with the SP method and the experience of consent and ethical research in international SP studies. Since a foundational discussion of the research ethics of the method was published in 2012, a growing number of (...) studies have implemented this method to collect data on the quality of care in a variety of settings around the world. We draw from that experience to provide empirical foundations for a popular approach to ethical approval of such studies in the United States and Canada, which has been to obtain a waiver of informed consent from the health care providers who are the subjects of the research. However, the majority of studies to date have evaluated quality of care outside the U.S., requiring additional ethical consideration when partnering with international institutions. We discuss these considerations in the context of a case study from a completed SP study in South Africa, where informed consent is constitutionally protected. (shrink)

PurposeThe main goals of this study are identifying the information needs of new North American immigrants to Israel and to ascertain which channels of information are used by the immigrants before and after immigration to try to satisfy their information needs.Design/methodology/approachA qualitative research approach was used for this study. Qualitative interviews were implemented as the primary strategy for data with the application of the grounded theory method for analysis.FindingsGeneral information needs categories included: housing, schooling, health, (...) banking and finances, drivers licenses, government‐related issues, legal issues and practical information. Personal information needs related to problems of “split” or prior immigration, changing over professional licenses, starting a business, children with special needs, and alternative medicine. Many of these needs were satisfied either prior to immigration or during the absorption process while others were left open leaving the immigrants with gaps in their knowledge, feelings of uncertainty and, at times, anxiety. During the preparations for immigration the greatest source of information came from the internet. After immigration, during the absorption process, word‐of‐mouth and personal contacts were the main sources for the immigrants to satisfy their information needs.Research limitations/implicationsAdditional research regarding immigration and immigrants from all different backgrounds is needed. Such research will help us learn more about other specific group's information needs and information seeking behavior.Practical implicationsBy learning and studying the information needs of immigrant's governments and immigration organizations can have a better understanding of how to assist immigrants have a successful integration into their new society.Originality/valueProspective immigrants, governments and immigration organizations can gain a deeper understanding of immigrant information needs and the channels used to satisfy those needs. (shrink)

Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study.

In order to assure optimal care of patients with chronic illnesses, it is necessary to take into account the cultural factors that may influence health-related behaviors, health practices, and health-seeking behavior. Despite the increasing number of Romanian Roma, research regarding their beliefs and practices related to healthcare is rather poor. The aim of this paper is to present empirical evidence of specificities in the practice of healthcare among Romanian Roma patients and their caregivers. Using a qualitative (...) exploratory descriptive design, this study is based on data gathered through three focus groups with 30 health mediators in the counties of Iasi and Cluj (Romania). We identified various barriers to access to healthcare for Roma patients: lack of financial resources and health insurance coverage, lack of cognitive resources or lack of personal hygiene, but also important cultural issues, such as the shame of being ill, family function, disclosure of disease-related information, patient’s autonomy, attitudes towards illness and health practices, that should be considered in order to create a culturally sensitive environment in Romanian medical facilities:… The role of the health mediators within the context of cultural diversity is also discussed, as cultural brokers contributing to health care quality among Romanian Roma patients Bridging cultural differences may improve patient–healthcare provider relationships, but may have limited impact in reducing ethnic disparities, unless coupled with efforts of Roma communities to get involved in creating and implementing health policies. (shrink)

There is a widespread feeling that health is special; the rules that are usually used in other policy areas are not applied in health policy. Health economists, for example, tend to be reluctant to offer economists’ usual prescription of competition and consumer choice, even though they have largely failed to justify this reluctance by showing that health economics involves special features such as public goods, externalities, adverse selection, poor consumer information, or unusually severe consequences. Similarly, (...) while some philosophers argue for bioethical conclusions based on very general ethical intuitions,1 many others rely on moral intuitions that are specific to health and medicine to draw conclusions that are meant to apply mainly in health and medicine. For example, many authors appear to start from the strong moral intuition that it typically seems wrong to deny poor people access to health care, and then seek moral principles that can both account for such intuitions and justify the claim that people have some sort of right to health care.2 In metaethics, opinions on moral intuitions range from an extreme intuitionism, which accepts all case-specific moral intuitions at face value as reliable moral guides, to an extreme foundationalism, which rejects such intuitions as evidence regarding correct general moral principles. Between these extremes, opinions vary on how severe the errors in our moral intuitions are. The practice of bioethics seems to favor the extreme intuitionist end of this spectrum, and thus implicitly expects mild errors.3 In contrast, this essay will suggest that common practice in bioethics has seriously underestimated the errors in our moral intuitions. In this essay, I consider the evolutionary origin of our moral intuitions, but avoid the extreme positions of moral skepticism and “whatever evolved must be good,” both of which are commonly associated with evolution-. (shrink)

Shifting laws and regulations increasingly displace the centrality of women's health concerns in the provision of abortion services. This is exemplified by the growing presence of deceptive Crisis Pregnancy Centers alongside new informed consent laws designed to dissuade women from seeking abortions. Litigation on informed consent is further complicated in the clinical context due to the increased mobilization of facts – such as the gestational age or sonogram of the fetus – delivered with the intent to dissuade women (...) from accessing abortion. In other words, factual information utilized for ideological purpose. To preserve a woman's autonomy and decision-making capacity, there must be a concerted effort on the part of legislators and courts to place a woman's health at the center of abortion law and policy. (shrink)

This paper is a personal account of the events associated with the author’s work at the University of Toronto’s Hospital for Sick Children on a drug, deferiprone, for the treatment of thalassaemia. Trials of the drug were sponsored by the Canadian Medical Research Council and a drug company which would have been able, had the trials been successful, to seek regulatory approval to market the drug. When evidence emerged that deferiprone might be inadequately effective in a substantial proportion of patients, (...) the drug company issued legal threats when the author proposed informing her patients and the scientific community. Until protests were made by international authorities in her field of research, the hospital and university did not adequately support the author’s academic freedom and responsibilities as a medical practitioner. It is argued that underlying cause of this, and of other similar cases, is the political philosophy which is driving the commercialisation of universities and bringing about the deregulation of drug approval procedures. Together these changes constitute a serious threat to the public good. (shrink)

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

Within the medical, legal and bioethical literature, there has been an increasing concern that the information derived from genetic tests may be used to unfairly discriminate against individuals seeking various kinds of insurance; particularly health and life insurance. Consumer groups, the general public and those with genetic conditions have also expressed these concerns, specifically in the context of life insurance. While it is true that all insurance companies may have an interest in the information obtained from (...) genetic tests, life insurers potentially have a very strong incentive to (want to) use genetic information to rate applicants, as individuals generally purchase their own cover and may want to take out very large policies. This paper critically focuses on genetic information in the context of life insurance. We consider whether genetic information differs in any relevant way from other kinds of non-genetic information required by and disclosed to life insurance companies by potential clients. We will argue that genetic information should not be treated any differently from other types of health information already collected from those wishing to purchase life insurance cover. (shrink)

Background The practice of health advocacy in nursing has been defined as a process aimed at promoting the independence and autonomy of users of health services, in addition to providing information on healthcare decision-making and offering support for decisions taken. Ethical considerations Ethics approval was not required to conduct this review. Aim This integrative review aims to synthesize evidence in the literature on health advocacy in professional nursing practice. Methods An integrative review methodology guided by Whittemore (...) and Knalf was used. Studies were identified by conducting searches on PubMed, Scopus, Web of Science, CINAHL, and LILACS databases. Of 2179 records, 34 studies matched the inclusion criteria. Results The main aspects involved in the practice of health advocacy by professional nurses are related to the ethical principles of the nursing profession, such as protecting patients seeking autonomy and care. Furthermore, the practice of health advocacy by nurses requires an empathetic attitude, responsibility, and assertive communication. Conclusion The diverse possibilities for the practice of advocacy synthesized in this study allow nurses to approach and become familiarized with the topic, being able to acquire and complement knowledge that will reflect on their professional practice in different work environments such as the educational field, in hospital practice, or basic health care. (shrink)

'Trade in Health is a timely reflection on the interface of economics with the ethics and public policy facets of the international movement of patients. Health issues such as these are at the forefront of modern political economy."National" health is increasingly less so. Reisman's previous scholarship in this area is brought to bear in an insightful and eminently readable and engaging fashion. In an area where uncovering the facts is more difficult than "decyphering the Dead Sea Scrolls", (...) such a reflective work on the critical aspects of political economy helps to fill a void in considering whether such trade is likely to be in the interests of patients, nations and the global community. In addition to the rosy picture of healthy and wealthy tourists having a sojourn for medical care during a vacation, Reisman is not afraid to tackle the thorny issues concerning trade in organs, eggs and even death, in this sobering and comprehensive volume. It is a rare skill to bring the luminaries of Smith, Marshall, Mill and Confucius to bear on such a contemporary tale! International travel by patients is at the nexus of a revolution in global health. It is driving and affecting aspects of foreign investment, health worker migration and e-health provision. Reisman skilfully links these foundations of health care, and as such provides critical text for consideration by those seeking to build and strengthen future health systems. Trade in Health is an excellent overview. It provides critical insights for those new to the area as well as new information and challenges for those of us involved for a number of years.' - Richard Smith, Professor of Health Ssytem Economics and Dean of Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, UK. Once exports and imports meant agriculture and industry. In the global economy and the electronic age, trade is also expanding into the service sector. This timely book closely examines trade in health. It documents the growth of a cross-national service that in the past was mainly consumed at home. Following from his highly successful book Health Tourism, Professor David Reisman offers a comprehensive and searching multidisciplinary account of the way in which medical services, patients, capital and professionals are making up a global healthcare economy that crosses borders. He reflects on their pursuit of lower prices, better quality and a differentiated product, and suggests that public policy is essential if the ethical capital of interdependent societies is not to be eroded by the international market in health and care. Written in a concise and lucid form, this original book will be of great interest to all people interested in the internationalization of health care. Combining theory and empirical evidence from economics, tourism and medical care, scholars involved in health policy and social administration will find much of significance in this authoritative study. (shrink)

Cluster randomised trials are an increasingly important methodological tool in health research but they present challenges to the informed consent requirement. In the relatively limited literature on the ethics of cluster research there is not much clarity about the reasons for which seeking informed consent in cluster randomised trials may be morally challenging. In this paper, I distinguish between the cases where informed consent in cluster trials may be problematic due to the distinct features of ‘population-based’ interventions, which (...) have not been adequately discussed in the research ethics literature, and the cases where informed consent may be problematic for reasons that investigators also encounter in other research designs. I claim that informed consent requirements in cluster trials should be adjusted to the level of risk involved, arguing for a more comprehensive notion of research risk than that currently found in the research ethics guidelines, and the amount of freedom to be sacrificed in relation to a particular research aim. I conclude that these two factors are the most important to consider when assessing whether a cluster study should proceed when informed consent is infeasible or difficult to obtain. (shrink)

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is (...) to shed light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals’ motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the “privacy paradox”). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals’ well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled “e-democracy” as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas. (shrink)

Complementary and alternative medicine is used by many in hopes of achieving important health-related goals. Survey data indicate that 42 percent of the U.S. population uses CAM, accounting for 629 million “office” visits a year and expenditures of 27 billion dollars. This high prevalence of use calls for a careful evaluation of CAM so as to ensure the well-being of those using its modalities. Such an evaluation would obviously include assessments of the safety and efficacy of particular approaches, the (...) training and integrity of practitioners, and the appropriateness of modalities for different conditions or uses. Given the lack of published data concerning many of these aspects of CAM, the likely unfamiliarity of its practitioners to the approaches available to clinicians practicing modern scientific medcine, and the need to respect the unique preferences of persons seeking assistance with achieving health-related goals, it is also important to assess the potential roles of informed consent for the use of CAM. Examining such roles is the central task of this paper. (shrink)

Complementary and alternative medicine is used by many in hopes of achieving important health-related goals. Survey data indicate that 42 percent of the U.S. population uses CAM, accounting for 629 million “office” visits a year and expenditures of 27 billion dollars. This high prevalence of use calls for a careful evaluation of CAM so as to ensure the well-being of those using its modalities. Such an evaluation would obviously include assessments of the safety and efficacy of particular approaches, the (...) training and integrity of practitioners, and the appropriateness of modalities for different conditions or uses. Given the lack of published data concerning many of these aspects of CAM, the likely unfamiliarity of its practitioners to the approaches available to clinicians practicing modern scientific medcine, and the need to respect the unique preferences of persons seeking assistance with achieving health-related goals, it is also important to assess the potential roles of informed consent for the use of CAM. Examining such roles is the central task of this paper. (shrink)

ABSTRACT Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking (...) in Africa. This study was part of a multi-country qualitative case study conducted in three African countries: Ghana, Uganda and Zambia under the auspices of the Human Heredity and Health in Africa initiative (H3Africa). Our study suggests that while participants are willing to give consent for their samples and associated data to be used for future research purposes, they expect to receive feedback about the progress of the research and about the kinds of research being undertaken on their samples and data. These expectations need to be anticipated and discussed during the consent process which should be seen as part of an ongoing communication process throughout the research process. (shrink)

Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in (...) Africa. This study was part of a multi-country qualitative case study conducted in three African countries: Ghana, Uganda and Zambia under the auspices of the Human Heredity and Health in Africa initiative. Our study suggests that while participants are willing to give consent for their samples and associated data to be used for future research purposes, they expect to receive feedback about the progress of the research and about the kinds of research being undertaken on their samples and data. These expectations need to be anticipated and discussed during the consent process which should be seen as part of an ongoing communication process throughout the research process. (shrink)

The decision of the High Court in Bell v Tavistock has excited considerable discussion about lawful consent for puberty-blocking drug treatment for children with gender dysphoria. The present paper draws attention to a wider question that surfaces through this case: is informed decision-making an adequate practical tool for seeking and obtaining patients’ consent for medical treatment? Informed decision-making engages the premises of the rational choice theory: that people will have well-crystallised health goals; and, if they are provided with (...) sufficient information about medical treatments, then they will be able to choose the treatment that satisfies their goals. Whilst appealing, the informed decision-making paradigm is assailed by various fallacies, which apply not only to children but also to adults. In Bell v Tavistock, the High Court seems to have recognised such fallacies, and it rejected informed decision-making as an adequate tool for consent from children with gender dysphoria. Similar considerations apply to adults in various situations. Thus, Bell v Tavistock can be seen as an attempt to refine the views on the consent that were expressed by the Supreme Court in Montgomery. It can be inferred that the Supreme Court did recognise the limitations of informed decision-making, but it did not develop this point. Further work is required to formulate an adequate model of decision-making, and Bell v Tavistock serves as a useful reminder to rethink informed decision-making as the device for consent. (shrink)

This thesis addresses the tension in pragmatic cluster-randomized trials between their social value and the requirement to respect the autonomy of research participants. Pragmatic trials are designed to evaluate the effectiveness of treatments in real-world settings to inform clinical decision-making and promote cost-efficient care. These trials are often embedded into clinical settings and ideally include all patients who would receive the treatments under investigation as a part of routine care. Trialists increasingly adopt cluster-randomized designs—in which intact groups, such as hospitals (...) or clinics, are allocated randomly to study interventions—to simplify the inclusion of all patients. But including all-comers conflicts with the requirement to obtain written informed consent from research participants. Since informed consent is central to respecting patient autonomy, the question arises: how can the ends of autonomy and pragmatism be served simultaneously? Some philosophers argue that patients have an obligation to participate in clinical research and that this may negate consent requirements. I argue that while there may be grounds for a prima facie obligation for patients to participate in clinical research, no compelling argument has demonstrated that the obligation is enforceable. Others assert that broad application of a waiver of consent will facilitate the conduct of pragmatic cluster-randomized trials. I demonstrate that this proposal sharply conflicts with the historical origins of the waiver. I articulate a novel moral foundation for the use of a waiver of consent and show that when trials evaluate treatments delivered directly to patients, the autonomy interests at stake for participants are too substantial to permit its use. My solution draws a distinction between consent requirements in existing policy and consent as an autonomous authorization. As many pragmatic cluster-randomized trials are conducted in primary care settings with no research staff, I argue that patient autonomy can be promoted and protected using clinical-style consent, in which health providers seek verbal informed consent from patients and document it in the electronic health record. This approach has been associated with high rates of recruitment and, thus, may satisfy both requirements for social value and respect for autonomy. (shrink)