This book analyses current ethical issues in public health research.

Information is clearly vital to public health, but the acquisition and use of public health data elicit serious privacy concerns. One strategy for navigating this dilemma is to build 'trust' in institutions responsible for health information, thereby reducing privacy concerns and increasing willingness to contribute personal data. This strategy, as currently presented in public health literature, has serious shortcomings. But it can be augmented by appealing to the philosophical analysis of the (...) concept of trust. Philosophers distinguish trust and trustworthiness from cognate attitudes, such as confident reliance. Central to this is value congruence: trust is grounded in the perception of shared values. So, the way to build trust in institutions responsible for health data is for those institutions to develop and display values shared by the public. We defend this approach from objections, such as that trust is an interpersonal attitude inappropriate to the way people relate to organisations. The paper then moves on to the practical application of our strategy. Trust and trustworthiness can reduce privacy concerns and increase willingness to share health data, notably, in the context of internal and external threats to data privacy. We end by appealing for the sort of empirical work our proposal requires. (shrink)

This paper argues that individuals do, in a sense, own or have exclusive claims to control their personal information and body parts. It begins by sketching several arguments that support presumptive claims to informational privacy, turning then to consider cases which illustrate when and how privacy may be overridden by public health concerns.

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)

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 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)

In 2008, Representative John Read of Mississippi recently co-sponsored state legislation that would ban restaurants from serving obese customers. He later admitted that the bill was a publicity stunt,meant to “shed a little light on the number one problem in Mississippi.” Although controversial, Read’s bill exemplifies both the current perception of obesity as a national public health problem and the general sentiment underlying the types of interventions that are being considered to address this issue. The proposed legislation also (...) demonstrates how policymakers can use or, in this case misuse, information about obesity to generate significant discussion on an issue along with ill-conceived legal interventions.Information sharing and the methods used to share best practices are components of the fourth core element of public health legal preparedness. (shrink)

The success of the health care system depends on the accuracy, correctness and trustworthiness of the information, and the privacy rights of individuals to control the disclosure of personal information. A national policy on health informational privacy should be guided by ethical principles that respect individual autonomy while recognizing the important collective interests in the use of health information. At present there are no adequate laws or constitutional principles to help guide a rational privacy (...) policy. The laws are scattered and fragmented across the states. Constitutional law is highly general, without important specific safeguards. Finally, a case study is provided showing the important trade-offs that exist between public health and privacy. For a model public health law, see www.critpath.org/msphpa/privacy. (shrink)

Objectives: To foster the development of a privacy-protective, sustainable cross-border information system in the framework of a European public health project. Materials and methods: A targeted privacy impact assessment was implemented to identify the best architecture for a European information system for diabetes directly tapping into clinical registries. Four steps were used to provide input to software designers and developers: a structured literature search, analysis of data flow scenarios or options, creation of an ad hoc questionnaire (...) and conduction of a Delphi procedure. Results: The literature search identified a core set of relevant papers on privacy. Technicians envisaged three candidate system architectures, with associated data flows, to source an information flow questionnaire that was submitted to the Delphi panel for the selection of the best architecture. A detailed scheme envisaging an “aggregation by group of patients” was finally chosen, based upon the exchange of finely tuned summary tables. Conclusions: Public health information systems should be carefully engineered only after a clear strategy for privacy protection has been planned, to avoid breaching current regulations and future concerns and to optimise the development of statistical routines. The BIRO project delivers a specific method of privacy impact assessment that can be conveniently used in similar situations across Europe. (shrink)

One of the largest, oldest, and most interesting challenges in health care is the balancing act in which clinicians have generally uncontroversial duties both to individual patients and to communities. Physicians and nurses must — so we teach them — put patients first, and at the same time recognize that individuals are members of communities. Individuals affect the health of communities, and communities affect the health of individuals. Thus, the moral and professional duties that result are sometimes (...) in conflict.Moreover, the traditional, prosaic clinical encounter is evolving in an environment increasingly shaped by electronic health records, personal health records, pharmacogenomics and vast networks of data collection and storage for public health surveillance, human subjects research, health services evaluation, and comparative effectiveness research. Health information technology is changing everything. It would be perverse otherwise: imagine large amounts of data and information either ignored, missed, or collected and then ignored. (shrink)

In the last two decades, WORDNET has evolved as the most comprehensive computational lexicon of general English. In this article, we discuss its potential for supporting the creation of an entirely new kind of information resource for public health, viz. MEDICAL WORDNET. This resource is not to be conceived merely as a lexical extension of the original WORDNET to medical terminology; indeed, there is already a considerable degree of overlap between WORDNET and the vocabulary of medicine. Instead, (...) we propose a new type of repository, consisting of three large collections of (1) medically relevant word forms, structured along the lines of the existing Princeton WORDNET; (2) medically validated propositions, referred to here as medical facts, which will constitute what we shall call MEDICAL FACTNET; and (3) propositions reflecting laypersons’ medical beliefs, which will constitute what we shall call the MEDICAL BELIEFNET. We introduce a methodology for setting up the MEDICAL WORDNET. We then turn to the discussion of research challenges that have to be met in order to build this new type of information resource. (shrink)

This paper is the companion to “Assessment of Information on Public Health Law Best Practices for Obesity Prevention and Control,” and the fourth of four action papers produced as part of the National Summit on Legal Preparedness for Obesity Prevention and Control, convened June 2008 by the Centers for Disease Control and Prevention, the Robert Wood Johnson Foundation, and the American Society for Law, Medicine Ethics. The four action papers present options to address gaps in the four (...) core elements of public health legal preparedness as outlined in the relevant companion papers. The four core elements are: laws and legal authorities; legal competencies for public health professionals to apply those laws and authorities; coordination of law-based efforts across jurisdictions and sectors, and information on public health law best practices. (shrink)

Protecting the privacy of individually-identifiable health data is a dominant health policy objective in the new millennium. Technological, economic, and health-related reasons substantiate the development of a national electronic health information infrastructure. Through this emerging infrastructure, billions of pieces of health data of varying sensitivities are exchanged annually to provide health care services and service transactions, conduct health research, and promote the public’s health. These multi-purpose, rapid exchanges of electronic (...) class='Hi'>health data, far removed from the typical disclosure of health information through the doctor/patient relationship of yesteryear, contribute to heightened individual concerns about identifiable health data. Responding to American fears and perceptions of actual and potential privacy abuses, policymakers have recently developed new, modern privacy protections through legislative and regulatory laws, as well as ethical and industry codes.Modern health information privacy protections are reflected in federal regulations developed by the federal Department of Health and Human Services pursuant to the Health Insurance Portability and Accountability Act of 1996. (shrink)

The Centers for Disease Control and Prevention’s goal is to develop a surveillance system of public health laws that would both support research and analysis among policymakers and legislators, and support the scientific basis for public health law. This session was convened, in part, to discuss the value of creating an electronic system to track public health legal information. Public health surveillance is the “ongoing, systematic collection, analysis, interpretation, and dissemination of (...) data regarding a health-related event for use in public health action to reduce morbidity and mortality and to improve health. Data disseminated by a public health surveillance system can be used for immediate public health action, program planning and evaluation, and formulating research hypotheses.” There is currently no system available that meets the goals of this definition of “surveillance” for public health laws. (shrink)

As policy makers place great hope in health information technology as a means to lower costs and achieve improvements in health care quality, safety, and efficiency, organizations at the forefront of building health information exchange networks attempt to weave the concept and function of informed consent into an evolving information-driven health care system. The vast amount of information that will become available to both health professionals and patients in the new HIT-driven (...) environment can reasonably be expected to affect the relationship between them in many ways, particularly in the area of informed consent. During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent’s proper role in a heretofore unknown health care environment — one in which electronic information sharing holds primary importance. The central and largely unexamined question of whether and how the legal and ethical underpinnings of informed consent will fit into the context of HITenabled treatment is critical to both public policy and clinical practice. (shrink)

The public must make assessments of a range of health-related issues. However, these assessments require scientific know-ledge which is often lacking or ineffectively utilized by the public. Lay people must use whatever cognitive resources are at their disposal to come to judgement on these issues. It will be contended that a group of arguments—so-called informal fallacies—are a valuable cognitive resource in this regard. These arguments serve as cognitive heuristics which facilitate reasoning when knowledge is limited or beyond (...) the grasp of reasoners. The results of an investigation into the use of these arguments by the public are reported. (shrink)

Rapid advances and exponential growth in computer and telecommunications technology have taken individual records and papers revealing the most intimate details of one’s life, habits, and genetic predisposition from the private sector into the public arena in derogation of privacy considerations. Although computerized medical information offers a means of streamlining and improving the health care delivery system through speed and enormous storage capacity, it also presents new challenges as it affects the right of privacy and expectation of (...) confidentiality, creating serious ethical and legal issues. Other considerations include constitutional matters such as loss of liberty when one is compelled to remain in an undesirable or unsuitable job so that insurance will not be canceled or the inability to secure another more suitable position due to genetic predisposition and denial of equal protection of the laws if one is stigmatized because one belongs to a certain ethnic or racial group that exhibits a particular genetic propensity. Collateral questions concern the propriety of disclosure of confidential health care information, including genetic data. This article also considers the proposed federal guidelines for a health information privacy law. (shrink)

Background: Information sharing is one of the most important means of public health nurses collaborating with other healthcare professionals and community members. There are complicated ethical issues in the process. Research objectives: To describe the ethical dilemmas associated with client information sharing that Japanese public health nurses experience in daily practice and to clarify their decision-making process to resolve these dilemmas. Research design: Data were collected using a three-phase consensus method consisting of semi-structured interviews, (...) self-administered questionnaires and a group interview. Participants and research context: We surveyed administrative public health nurses in Shizuoka Prefecture, Japan. The semi-structured interviews were carried out with 12 administrative public health nurses, and the self-administered questionnaires were sent to all 899 administrative public health nurses. The group interview was carried out with eight administrative public health nurses. Ethical considerations: Ethical approval was granted by the ethics committee of the School of Health Sciences, Nagoya University, Japan (8-158, 9-130). Findings: Information-sharing ethical dilemmas occurred most often when clients’ decisions did not coincide with the nurses’ own professional assessments, particularly when they faced clinical issues that were inherently ambiguous. In their decision-making processes, nurses prioritised ‘protection of health and life’. Discussion: These findings suggest that, above all, they sought to address urgent risks to clients’ lives while upholding the principle of client autonomy as much as possible. In such cases, the nurses made decisions regarding whether to share information about the client depending on the individual situation. Conclusion: Public health nurses should protect the client’s health while taking into consideration their relationship with the client. (shrink)

Background Immense volumes of personal health information are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: broad versus specific consent; opt-in versus opt-out approaches; comfort level sharing with different recipients; attitudes towards commercialization; and options to track PHI use and study results. Results 222 participants were included (...) in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients were more uncomfortable than older patients. While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients. Approximately half of patients were uncomfortable sharing PHI with commercial enterprises. Most patients preferred to track PHI usage, with the highest proportion once again reported by the youngest patients. A majority of patients also wished to be notified regarding study results. Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research. (shrink)

When information is transformed from what has traditionally been a paper-based format into digitized elements with meaning associated to them, new and intriguing discussions begin surrounding proper and improper uses of this codified and easily transmittable information. As these discussions continue, some health care providers, insurers, laboratories, pharmacies, and other healthcare stakeholders are creating and retroactively digitizing our medical information with the unambiguous endorsement of the federal government.Some argue that these enormous databases of medical information (...) offer improved access to timely information, evidence-based treatments, and complete records from which to provide care. To the extent that these claims are true, it would seem that this is a valuable asset that offers immeasurable benefit to all. Others believe this digitization to be an egregious invasion of privacy. In this article, I investigate the broad research questions of whether the public good aspect of capturing private health information outweighs individual interests and whether it is ethical to mandate participation in health information exchanges by all individuals who use the U.S. health system. (shrink)

The obligation to maintain the privacy of patients and research participants is foundational to biomedical research. But there is growing concern about the challenges of keeping participant information private and confidential. A number of recent studies have highlighted how emerging computational strategies can be used to identify or reidentify individuals in health data repositories managed by public or private institutions. Some commentators have suggested the entire concept of privacy and anonymity is “dead”, and this raises legal and (...) ethical questions about the consent process and safeguards relating to health privacy. Members of the public and research participants value privacy highly, and inability to ensure it could affect participation. Canadian common law and legislation require a full and comprehensive disclosure of risks during informed consent, including anything a reasonable person in the participant or patient’s position would want to know. Research ethics policies require similar disclosures, as well as full descriptions of privacy related risks and mitigation strategies at the time of consent. In addition, the right to withdraw from research gives rise to a need for ongoing consent, and material information about changes in privacy risk must be disclosed. Given the research ethics concept of “non-identifiability” is increasingly questionable, policies based around it may be rendered untenable. Indeed, the potential inability to ensure anonymity could have significant ramifications for the research enterprise. (shrink)

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

Should public health authorities have access to your personal medical information without your permission? The usual justifications for requiring informed consent do not necessarily apply. That is not to say that consent may be avoided in all situations, just that the reasons for requiring consent in public health are different than for traditional medical treatment.

Introduction Understanding the views of the public is essential if generally acceptable policies are to be devised that balance research access to general practice patient records with protection of patients' privacy. However, few large studies have been conducted about public attitudes to research access to personal health information. Methods A mixed methods study was performed. Informed by focus groups and literature review, a questionnaire was designed which assessed attitudes to research access to personal health (...) class='Hi'>information and factors that influence these. A postal survey was conducted of an electoral roll-based sample of the adult population of Ireland. Results Completed questionnaires were returned by 1575 (40.6%). Among the respondents, 67.5% were unwilling to allow GPs to decide when researchers could access identifiable personal health information. However, 89.5% said they would agree to ongoing consent arrangements, allowing the sharing by GPs of anonymous personal health information with researchers without the need for consent on a study-by-study basis. Increasing age (by each 10-year increment), being retired and primary level education only were significantly associated with an increased likelihood of agreeing that any personal health information could be shared on an ongoing basis: OR 1.39 (95% CI 1.18 to 1.63), 2.00 (95% CI 1.22 to 3.29) and 3.91 (95% CI 1.95 to 7.85), respectively. Conclusions Although survey data can be prone to response biases, this study suggests that prior consent agreements allowing the supply by GPs of anonymous personal health information to researchers may be widely supported, and that populations willing to opt in to such arrangements may be sufficiently representative to facilitate valid and robust consent-dependent observational research. (shrink)

Older racialized minorities were particularly vulnerable during the last pandemic due to the interlocking influences of structural racism and ageism, which are often disregarded in public health planning. This oversight not only compromises the social justice and health equity goals of public health efforts but it also calls for a more inclusive approach that systematically addresses these deficiencies at every stage of a public health response. To achieve this, we propose Age- and Race-conscious (...) Interventions done Equitably (ARIE), a novel analytical framework grounded in critical race theory and critical gerontology. ARIE is based on a four-step approach, which aligns with different stages of public health interventions. It will help ensure that structural discrimination influencing access to healthcare resources during a biological event is not ignored, and that public health authorities work actively toward identifying and addressing ageist and racist biases in their response plans and interventions. (shrink)

The recent decrease in public confidence in the measles, mumps and rubella vaccine has important implications for individuals and public health. This article presents moral arguments relating to conflicts between individual autonomy and collective responsibilities in vaccination decisions with a view to informing and advising health professionals and improving the effectiveness of education policies in avoiding resurgence of endemic measles. Lower population immunity, due to falling uptake, is hastening the need for greater public awareness of (...) the consequences for the population. Vaccination refusals go hand in hand with responsibilities owed to future generations and society in not knowingly contributing to preventable harms. Issues such as parents’ rights are considered and balanced against: collective responsibilities for public health; permissibility of ‘free-riding’; conflicting duties of health professionals; and possible enforcement of vaccination. It is suggested that the arguments may form a persuasive tool for the practice of health professionals involved in informing and supporting parents’ vaccination decisions. (shrink)

This is one of four interrelated action agenda papers resulting from the National Summit on Public Health Legal Preparedness convened in June 2007 by the Centers for Disease Control and Prevention and nineteen multi-disciplinary partner organizations. Each of the action agenda papers deals with one of the four core elements of public health legal preparedness: laws and legal authorities; competency in using those laws; coordination of law-based public health actions; and information. Options presented (...) in this paper are for consideration by policymakers and practitioners — in all jurisdictions and all relevant sectors and disciplines — with responsibilities for all-hazards emergency preparedness.This paper focuses on the fourth core element: information that can be used in shaping and applying law as a public health tool, specifically in the context of public health emergencies. (shrink)

Information is the fourth core element of public health legal preparedness and of legal preparedness for public health emergencies specifically. Clearly, the creation, transmittal, and application of information are vital to all public health endeavors. The critical significance of information grows exponentially as the complexity and scale of public threats increase.Only a small body of organized information on public health law existed before the 21st century: a series (...) of landmark books published beginning in 1926 by Tobey, Grad, and Wing ; model public health laws published as early as 1907; systematic reviews of original research studies published in the 1990s; and a small but growing number of articles published in public health journals and law reviews.With the new century came new public health law programs and activities at the Centers for Disease Control and Prevention, in public health professional associations, and in numerous non-profit and academic organizations. (shrink)

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health (...) class='Hi'>information is indispensable for advancing science, medical care and public health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur’s ‘‘little ethics’’, based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur’s ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information. (shrink)

This paper argues that specific individual informed consent and other forms of consent predicated on a right to autonomy may not in all circumstances be appropriate for the establishment and use of large data sets of health information. We suggest that there are inherent failings in such an approach, shortcomings that we analyse below. We argue that individuals share an obligation to contribute their data, as doing so is cost-free and benefits accrue to the population as a whole. (...) Large health data sets can be considered public goods – goods that are non-rival in consumption and in some cases non-exclusive in use – and contributing to these goods may be an obligation, the meeting of which allows citizens to invest in knowledge infrastructure. The approach argued for here is a variation of a communitarian ethic in which people have an obligation to contribute their data but have no correlative right to expect or receive an individual benefit. (shrink)

Background Informed consent procedures for large population-based cohort studies should be comprehensive and easy-to-use. This is particularly challenging when participants from different socio-economic groups and multicultural ethnic backgrounds are involved. Recently, more and more studies have tried to use multimedia in informed consent procedures. We describe the development and testing of a digital informed consent app and elaborate on whether this may contribute to a comprehensive and practical procedure to obtain informed consent for public health research. Methods In (...) a sample of parents with young children, we used a mixed method approach to study the user experience of an informed consent app and evaluate whether it can be used to adequately inform people and register their consent. Through semi-structured interviews we investigated participants’ experiences with and opinions about the app, with a special focus on comprehensibility of the content and the usability of the app. Information retention questions were asked to evaluate to what extent participants could recall key aspects of the provided study information. Results The 30 participants in this study used the app between 4 and 15 min to give their consent. Overall, they found the app well-designed, informative and easy to use. To learn more about the study for which informed consent is asked, most of the participants chose to watch the animated film, which was generally found to convey information in a clear manner. The identification process was met with mixed reactions, with some feeling it as a secure way to give consent, while for others it contradicted their view of using data anonymously. Information retention questions showed that while all participants remembered various aspects of the study, fewer than half answered all four questions satisfactorily. Conclusion Our study shows that a well-designed informed consent app can be an effective tool to inform eligible participants and to record consents. Still, some issues remain, including trust barriers towards the identification procedure and lack of information retention in some participants. When implementing consent procedures that incorporate digital formats, it may be beneficial to also invest in a complementary face-to-face recruitment approach. (shrink)

BackgroundPersonal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research.MethodsA 45-item (...) survey was distributed to a convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences.ResultsTwo hundred eleven of 400 distributed surveys were completed. Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards.ConclusionsClinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public’s trust is maintained. (shrink)

As an approach to public engagement, deliberation has the potential to pursue a range of goals identified by public participation theorists including the opportunity to substantively inform policy processes, increase the public’s knowledge and understanding of public issues and create or restore loss of public trust and confidence in public institutions. Baum and colleagues (2009) offer several important take-home messages for policy makers and public health leaders about the value of engaging with (...) the public about ethically challenging, value-laden and resource intensive policy issues such as pandemic response planning. (shrink)

Approximately 70% of Koreans access health and medical information online. Health information providers play a crucial role in enhancing public health by ensuring that individuals can effectively consume and utilize this information according to their information-seeking behaviors. However, existing tools for evaluating health information websites have significant limitations. These tools are often one-size-fits-all and lack strategic recommendations for delivering consumer-centered health information. There is a clear need for alternative (...) approaches beyond merely identifying the quality factors that satisfy consumers. A Strengths, Weaknesses, Opportunities, and Threats—Analytic Hierarchy Process (SWOT-AHP) evaluates both internal and external environmental factors of a health information website, which provides strategies based on the prioritization and weighting of quality factors. Specifically, the 'National Health Information Portal,' a platform provided by the Korea Disease Control and Prevention Agency, was assessed through a comprehensive review of prior research and a SWOT analysis, followed by an AHP survey involving 15 experts specializing in health information websites. The findings of the analysis indicate that the most effective development strategy is the SO (Strengths-Opportunities) strategy. This study highlights the need to move beyond uniform evaluation tools and consider the dynamic and complex nature of the Internet, emphasizing the importance of developing prioritized strategies based on evaluations from both consumers and providers. (shrink)

This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both (...) of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used for the benefit of others when health information is wrongfully collected or used. Transparency and openness about data use, public involvement in decisions, and just distribution of the benefits of surveillance are core elements in the justification of surveillance practices. Understanding health surveillance practices, the concerns it raises, and how to respond to them is critical not only to ethical and trustworthy but also to publicly acceptable and ultimately sustainable surveillance practices. The book is of interest to scholars and practitioners of the ethics and politics of public health, bioethics, privacy and data technology, and health policy. These issues are ever more pressing in pandemic times, where misinformation can travel quickly and suspicions about disease spread, treatment efficacy, and vaccine safety can have devastating public health effects. (shrink)

Au Québec, la Loi sur l’accès aux documents des organismes publics et sur la protection des renseignements personnels offre une exception en matière de transparence à la plupart des institutions publiques où la recherche en santé publique est menée en leur permettant de ne pas divulguer leurs utilisations de données à caractère personnel (souvent collectées sans le consentement des personnes étudiées). Cette exception est éthiquement problématique en raison de préoccupations importantes (ex. : la protection de la vie privée et les (...) inconvénients potentiels des utilisations secondaires de données) et nous soutenons que tous ceux qui mènent des recherches doivent être transparents et responsables du travail qu’ils accomplissent dans l’intérêt public. (shrink)

Electronic health records are likely to improve health care but in the U.S. they will also enable health insurers to be more selective in deciding to whom to deny coverage or whose premiums to increase. In a Rawlsian social contract (1971) the veil of ignorance does not conceal general scientific information from the hypothetical contracting parties. Nonetheless, this paper shows that social contract considerations rule out risk selection as morally impermissible. Since modern health care must (...) in effect be paid for by public or private insurance, and doing so is efficient, this is a basic part of health care justice. But for information ethics this argument does not extend beyond cases in which provision of information serves to deny a social primary good to members of society. (shrink)

Health information by its nature is personal and sensitive. At the same time, significant public value has resulted from research with health records about determinants of health and effective provision of health services. In Canada, certain legislation and processes have been established to balance the individual's right to privacy and the public good associated with analysis of health information.My purpose is to describe privacy and confidentiality practices in Canada with respect to (...) access to health data for research purposes. I provide an overview of the Canadian health care system and the legislative framework used to regulate research related to health information and Canada's major national data bases. Then I describe the confidentiality and privacy policies and procedures of Statistics Canada, of the Canadian Institute for Health Information, and of health policy research organizations in three provinces. I conclude with comments on some current issues in health information in Canada. (shrink)

Optimistic predictions that genetic and genomic testing will provide health benefits have been tempered by the concern that individuals who receive their results may experience negative psychosocial outcomes. This potential ethical and clinical concern has prompted extensive conversations between policy‐makers, health researchers, ethicists, and the general public. Fortunately, the psychosocial consequences of such testing are subject to empirical investigation, and over the past quarter century, research that clarifies some of the types, likelihood, and severity of potential harms (...) from learning the results of the testing has accumulated. I aim to provide an overview of the findings of this research by looking at selected systematic reviews. This will convey the gist of the literature’s quality and coverage, reveal gaps in existing knowledge, and highlight promising areas for future scholarship. (shrink)

Since the fourth century, B.C.E., the Oath of Hippocrates has been the starting point in analyzing the obligations of physicians to protect the privacy and confidentiality interests of their patients. The pertinent provision of the Oath reads as follows: “What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account must be spread abroad, I will keep to myself, holding such things shameful (...) to be spoken about.”This part of the Oath is subject to more than one interpretation, but its commonly accepted meaning provides the ethical foundation for the physician’s duty of confidentiality. The Oath expressly declares that a physician’s obligation of confidentiality applies beyond matters of medical care. At a time when there were no hospitals or physician offices, patients received medical care in their homes or in public places. Physicians treating patients in their homes could be expected to see and hear a wide range of activities that might be considered embarrassing, immoral, or even illegal. (shrink)

BackgroundAdvances in healthcare artificial intelligence (AI) are occurring rapidly and there is a growing discussion about managing its development. Many AI technologies end up owned and controlled by private entities. The nature of the implementation of AI could mean such corporations, clinics and public bodies will have a greater than typical role in obtaining, utilizing and protecting patient health information. This raises privacy issues relating to implementation and data security. Main bodyThe first set of concerns includes access, (...) use and control of patient data in private hands. Some recent public–private partnerships for implementing AI have resulted in poor protection of privacy. As such, there have been calls for greater systemic oversight of big data health research. Appropriate safeguards must be in place to maintain privacy and patient agency. Private custodians of data can be impacted by competing goals and should be structurally encouraged to ensure data protection and to deter alternative use thereof. Another set of concerns relates to the external risk of privacy breaches through AI-driven methods. The ability to deidentify or anonymize patient health data may be compromised or even nullified in light of new algorithms that have successfully reidentified such data. This could increase the risk to patient data under private custodianship.ConclusionsWe are currently in a familiar situation in which regulation and oversight risk falling behind the technologies they govern. Regulation should emphasize patient agency and consent, and should encourage increasingly sophisticated methods of data anonymization and protection. (shrink)

How far should we go in protecting and promoting public health? Can we force people to give up unhealthy habits and make healthier choices, or does everyone have the right to decide their own lifestyle? Should we stop treating smokers who refuse to give up smoking? Should we put a tax on fatty foods and ban vending machines in schools to address the obesity epidemic? Should parents be required to have their children vaccinated? Are some of our screening (...) programmes unethical Downs syndrome screening, for example or should we be screening people for more conditions, such as Huntington disease? Such questions are at the heart of public health ethics. Holland shows that to understand and debate these issues requires philosophy: moral philosophies, such as utilitarianism and deontology, as well as political philosophies such as liberalism and communitarianism. And philosophy informs other aspects of public health, such as epidemiology and health promotion. The aim of this book is to provide a lively, accessible and philosophically informed introduction to such issues. It is an ideal textbook for students taking courses in public health ethics. And since this book develops systematic discussions of issues in public health ethics, there is also much here to engage and challenge the more advanced reader. (shrink)

For decades, health information has been collected and shared for health care delivery and public health purposes. While the “primary use” of patient data for providing direct health care services is the cornerstone of health care practice, health departments rely on data sharing for research and analysis to support disease prevention and health promotion in the population. As the U.S. health system undergoes a digital revolution, health information that (...) was previously captured in paper form now can be captured electronically. Electronic health information has transformed the efficiency, capacity, and functions of the U.S. health system. For this reason, there is increased attention to the “secondary use” of electronic patient data for public health uses, including disease reporting and investigation, syndromic surveillance, and patient-specific or population-level communications about health conditions and their associated risk factors. Secondary uses may also encompass clinical research, licensure, and payment for services. (shrink)

Gamma radioactivity produced by human technology is the most dangerous industrial product to life. Two recent global catastrophic events in which nuclear plants were involved, separated only by 25 years, have confirmed that, independently of the usage of nuclear weapons, achieving the 100% of security in the nuclear energy management was and still is a complete unrealistic idea. Although the guarantee of offering information of food and drink products quality concerning the date of expiry or the ingredients content is (...) nowadays stipulated in laws around many countries, this is not the case of the radiation safety. An important investment to offer information concerning gamma radiation safety conditions in food and drink products offered by markets, which also could help to localize quickly, possible radioactive slight incidents, is here discussed. The implementation of a previous consumer-behaviour experiment in markets is also suggested. (shrink)

Electronic information is a vital but complex component in the modern health care system, fueling ongoing efforts to develop a universal electronic health record infrastructure. This innovation creates a substantial tension between two desirable values: the increased quality and utility of patient medical records and the protection of the privacy of the information they contain. This article discusses related U.S. legislation, policy, and law—including the Health Insurance Portability and Accountability Act of 1996. This article offers (...) an inclusive, equilibrium model to conceptualize the spectrum of challenge that this interplay of desirable but oppositional values creates. The model illustrates the relationship between information privacy and information flow, and that between individual and society-level needs, within the resulting impact sectors of individual security, health care priorities, public health effectiveness, and e-health development, while specifying beneficial outcomes for each. (shrink)

Current UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group for permission to access medical records without (...) written permission. We present a case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case £560 000 of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG’s responsibilities to research ethics committees, and by allowing “opt-out” consent for many public health research projects. (shrink)

Public health nurses (PHN) have had a long history of working with new mothers in the community. Their practice includes collaboration, building therapeutic relationships, mutual goal setting, establishing trust, supporting clients’ strengths, empowerment and social justice. The wealth of information that new mothers receive both solicited and unsolicited may come from many different sources such as medicine, midwifery and those created personally by families. Although much of the information on mothering is presented with the intent of (...) helping, it can also be hegemonic and oppressive depending on different discourses, stereotypes and myths of mothering and therefore may cause confusion, guilt and uncertainty. Public health nurses often address conflicting social, cultural and personal discourses about mothering practices in order to support an empowering mothering experience. The term ‘social mediator’ was purposefully created in an attempt to describe the unique work of PHNs that this author has witnessed through her own research and practice as a PHN. This paper will present a discussion of the author's own work and research findings that will suggest how feminist poststructuralist theory may be used to guide and understand information exchange between PHNs and mothers as they mediate different social, cultural and personal discourses on mothering. (shrink)

A normatively adequate public health ethics needs to be anchored in political philosophy rather than in ethics. Its central ethical concerns are likely to include trust and justice, rather than autonomy and informed consent.

Current UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group for permission to access medical records without (...) written permission. We present a case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case £560 000 of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG’s responsibilities to research ethics committees, and by allowing “opt-out” consent for many public health research projects. (shrink)