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1.
BMC Med Ethics ; 25(1): 38, 2024 Mar 27.
Artigo em Inglês | MEDLINE | ID: mdl-38539209

RESUMO

In line with recent proposals for experimental philosophy and philosophy of science in practice, we propose that the philosophy of medicine could benefit from incorporating empirical research, just as bioethics has. In this paper, we therefore take first steps towards the development of an empirical philosophy of medicine, that includes investigating practical and moral dimensions. This qualitative study gives insight into the views and experiences of a group of various medical professionals and patient representatives regarding the conceptualization of health and disease concepts in practice and the possible problems that surround them. This includes clinical, epistemological, and ethical issues. We have conducted qualitative interviews with a broad range of participants (n = 17), working in various health-related disciplines, fields and organizations. From the interviews, we highlight several different practical functions of definitions of health and disease. Furthermore, we discuss 5 types of problematic situations that emerged from the interviews and analyze the underlying conceptual issues. By providing theoretical frameworks and conceptual tools, and by suggesting conceptual changes or adaptations, philosophers might be able to help solve some of these problems. This empirical-philosophical study contributes to a more pragmatic way of understanding the relevance of conceptualizing health and disease by connecting the participants' views and experiences to the theoretical debate. Going back and forth between theory and practice will likely result in a more complex but hopefully also better and more fruitful understanding of health and disease concepts.


Assuntos
Bioética , Filosofia , Humanos , Princípios Morais , Atenção à Saúde
2.
Palliat Care Soc Pract ; 18: 26323524231225249, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38352191

RESUMO

Background: Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients' care paths. Aim and objectives: The central aim of the 4D PICTURE project is to redesign patients' care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project. Design methods and analysis: In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states. Ethics: Through an embedded ethics approach, we will address social and ethical issues. Discussion: Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency.


Improving the cancer patient journey and respecting personal preferences: an overview of the 4D PICTURE project The 4D PICTURE project aims to help cancer patients, their families and healthcare providers better undertstand their options. It supports their treatment and care choices, at each stage of disease, by drawing on large amounts of evidence from different types of European data. The project involves experts from many different specialist areas who are based in nine European countries. The overall aim is to improve the cancer patient journey and ensure personal preferences are respected.

3.
JMIR Res Protoc ; 12: e45293, 2023 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-37556197

RESUMO

BACKGROUND: Women with a low socioeconomic status often have a vulnerable health status due to an accumulation of health-deteriorating factors such as poor lifestyle behaviors, including inadequate nutrition, mental stressors, and impaired health literacy and agency, which puts them at an unnecessary high risk of adverse pregnancy outcomes. Adequately preparing for pregnancy through preconception care (PCC) uptake and lifestyle improvement can improve these outcomes. We hypothesize that nudging is a successful way of encouraging engagement in PCC. A nudge is a behavioral intervention that changes choice behavior through influencing incentives. The mobile health (mHealth) app-based loyalty program Pregnant Faster aims to reward women in an ethically justified way and nudges to engage in pregnancy preparation by visiting a PCC consultation. OBJECTIVE: Here, we first describe the process of the cocreation of the mHealth app Pregnant Faster that aims to increase engagement in pregnancy preparation by women with a vulnerable health status. Second, we describe the cohort study design to assess the feasibility of Pregnant Faster. METHODS: The content of the app is based on the eHealth lifestyle coaching program Smarter Pregnancy, which has proven to be effective in ameliorating preconceptional lifestyle behaviors (folic acid, vegetables, fruits, smoking, and alcohol) and an interview study pertaining to the preferences of the target group with regard to an mHealth app stimulating PCC uptake. For moral guidance on the design, an ethical framework was developed based on the bioethical principles of Beauchamp and Childress. The app was further developed through iterative cocreation with the target group and health care providers. For 4 weeks, participants will engage with Pregnant Faster, during which opportunities will arise to earn coins such as reading informative blogs and registering for a PCC consultation. Coins can be spent on small fun rewards, such as folic acid, fruits, and mascara. Pregnant Faster's feasibility will be tested in a study including 40 women aged 18 to 45 years, who are preconceptional or <8 weeks pregnant, with a low educational level, and living in a deprived neighborhood. The latter 2 factors will serve as a proxy of a low socioeconomic status. Recruitment will take place through flyers, social media, and health care practices. After finalization, participants will evaluate the app through the "mHealth App Usability Questionnaire" and additional interviews or questionnaires. RESULTS: Results are expected to be published by December 2023. CONCLUSIONS: Pregnant Faster has been designed through iterative cocreation with the target group and health care professionals. With the designed study, we will test Pregnant Faster's feasibility. If overall user satisfaction and PCC uptake is achieved, the app will be further developed and the cohort will be continued with an additional 400 inclusions to establish effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/45293.

4.
J Med Philos ; 48(4): 322-334, 2023 06 20.
Artigo em Inglês | MEDLINE | ID: mdl-37202835

RESUMO

Alzheimer's Disease (AD) provides an excellent case study to investigate emerging conceptions of health, disease, pre-disease, and risk. Two scientific working groups have recently reconceptualized AD and created a new category of asymptomatic biomarker positive persons, who are either said to have preclinical AD, or to be at risk for AD. This article examines how prominent theories of health and disease would classify this condition: healthy or diseased? Next, the notion of being "at risk"-a state somewhere in-between health and disease-is considered from various angles. It is concluded that medical-scientific developments urge us to let go of dichotomous ways of understanding disease, that the notion of "risk," conceptualized as an increased chance of getting a symptomatic disease, might be a useful addition to our conceptual framework, and that we should pay more attention to the practical usefulness and implications of the ways in which we draw lines and define concepts.


Assuntos
Doença de Alzheimer , Humanos , Doença de Alzheimer/diagnóstico , Formação de Conceito , Biomarcadores , Fatores de Risco
5.
Soc Sci Med ; 326: 115910, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37121066

RESUMO

BACKGROUND: Discrete choice models (DCMs) for moral choice analysis will likely lead to erroneous model outcomes and misguided policy recommendations, as only some characteristics of moral decision-making are considered. Machine learning (ML) is recently gaining interest in the field of discrete choice modelling. This paper explores the potential of combining DCMs and ML to study moral decision-making more accurately and better inform policy decisions in healthcare. METHODS: An interdisciplinary literature search across four databases - PubMed, Scopus, Web of Science, and Arxiv - was conducted to gather papers. Based on the Preferred Reporting Items for Systematic and Meta-analyses (PRISMA) guideline, studies were screened for eligibility on inclusion criteria and extracted attributes from eligible papers. Of the 6285 articles, we included 277 studies. RESULTS: DCMs have shortcomings in studying moral decision-making. Whilst the DCMs' mathematical elegance and behavioural appeal hold clear interpretations, the models do not account for the 'moral' cost and benefit in an individual's utility calculation. The literature showed that ML obtains higher predictive power, model flexibility, and ability to handle large and unstructured datasets. Combining the strengths of ML methods with DCMs has the potential for studying moral decision-making. CONCLUSIONS: By providing a research agenda, this paper highlights that ML has clear potential to i) find and deepen the utility specification of DCMs, and ii) enrich the insights extracted from DCMs by considering the intrapersonal determinants of moral decision-making.


Assuntos
Atenção à Saúde , Humanos
6.
Transpl Int ; 35: 10751, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36388425

RESUMO

Regenerative medicine has emerged as a novel alternative solution to organ failure which circumvents the issue of organ shortage. In preclinical research settings bio-artificial organs are being developed. It is anticipated that eventually it will be possible to launch first-in-human transplantation trials to test safety and efficacy in human recipients. In early-phase transplantation trials, however, research participants could be exposed to serious risks, such as toxicity, infections and tumorigenesis. So far, there is no ethical guidance for the safe and responsible design and conduct of early-phase clinical trials of bio-artificial organs. Therefore, research ethics review committees will need to look to related adjacent fields of research, including for example cell-based therapy, for guidance. In this systematic review, we examined the literature on early-phase clinical trials in these adjacent fields and undertook a thematic analysis of relevant ethical points to consider for early-phase clinical trials of transplantable bio-artificial organs. Six themes were identified: cell source, risk-benefit assessment, patient selection, trial design, informed consent, and oversight and accountability. Further empirical research is needed to provide insight in patient perspectives, as this may serve as valuable input in determining the conditions for ethically responsible and acceptable early clinical development of bio-artificial organs.


Assuntos
Órgãos Artificiais , Obtenção de Tecidos e Órgãos , Humanos , Ética em Pesquisa , Consentimento Livre e Esclarecido , Seleção de Pacientes
7.
Ethics Hum Res ; 44(6): 2-13, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36316970

RESUMO

More and more frequently, clinical trials for Alzheimer disease (AD) are targeting cognitively unimpaired individuals who are at increased risk of developing the disease. It is not always clear whether AD biomarker information should be disclosed to research participants: on the one hand, research participants may be interested in learning this information because of its perceived utility, but on the other hand, learning this information may be harmful, as there are very few effective preventive or therapeutic options available for AD. In this article, we bring together three separate sets of ethical guidance literature: on the return of individual research results, on an individual's right to access personal data, and on transparent enrollment into clinical trials. Based on these literatures, we suggest policies for the disclosure of AD biomarker test results in longitudinal observational cohort studies, clinical trials, and hybrid research projects, such as the European Prevention of Alzheimer's Dementia (EPAD) project, in which we served as an ethics team. We also present and critically discuss recommendations for disclosure of AD biomarkers in practice. We underscore that, as long as the clinical validity of AD biomarkers remains limited, there are good reasons to avoid actively disclosing them to cognitively unimpaired research participants.


Assuntos
Doença de Alzheimer , Humanos , Doença de Alzheimer/prevenção & controle , Revelação , Biomarcadores , Estudos Longitudinais , Políticas
8.
BMC Pregnancy Childbirth ; 22(1): 559, 2022 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-35831786

RESUMO

BACKGROUND: Women with a vulnerable health status, as determined by a low socioeconomic status and poor lifestyle behaviours, are at risk for adverse pregnancy outcomes. Offering tailored preconception lifestyle care can significantly help to improve pregnancy outcomes. We hypothesize that so-called 'nudges' can be a successful way of increasing the uptake of preconception lifestyle care. A nudge is a behavioural intervention that supports healthy choices by making them easier to choose. Nudging, however, raises many moral questions. Effectiveness and respect for autonomy are, among other criteria, required for a nudge to be morally permissible. In general, the target group knows best what they find permissible and what would motivate them to change their lifestyle. Therefore, this study - conducted in women with a vulnerable health status - aimed to identify their preferences towards a nudge, provided via a mobile application that aims to help them adopt healthy lifestyle behaviours by offering rewards.  METHODS: We conducted semi-structured interviews with twelve women with a vulnerable health status. A framework approach was used to analyse the data. A thematic content analysis was conducted on five themes: (1) "Usefulness of an app as an integral information source", (2) "Permissibility and effects of offering rewards", (3) "Preferences regarding content", (4) "Preferences regarding type of rewards and system of allocation", and (5) "Barriers". RESULTS: Of the 12 participants, 11 deemed an app as integral information source concerning the preconception period useful. None of the participants objected to being nudged i.e., being rewarded for healthy behaviour. All participants stated that they would like the app to contain information on healthy nutrition and 8 participants wanted to know how to get pregnant quickly. Furthermore, participants stated that the freedom to choose the timing and content of the reward would increase the probability of successful behavioural change, and having to pay or contact a healthcare provider to access the app may prevent women using the app. CONCLUSIONS: These insights into the preferences of women with a vulnerable health status towards nudging will inform the design of an effective app-based nudge. This may help to improve prepregnancy health as investment in health of current and future generations.


Assuntos
Estilo de Vida Saudável , Cuidado Pré-Concepcional , Feminino , Nível de Saúde , Humanos , Cuidado Pré-Concepcional/métodos , Gravidez , Pesquisa Qualitativa , Responsabilidade Social
10.
J Bioeth Inq ; 19(2): 287-297, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35306635

RESUMO

An increasing number of people seek medical attention for mild cognitive symptoms at older age, worried that they might develop Alzheimer's disease. Some clinical practice guidelines suggest offering biomarker testing in such cases, using a brain scan or a lumbar puncture, to improve diagnostic certainty about Alzheimer's disease and enable an earlier diagnosis. Critics, on the other hand, point out that there is no effective Alzheimer treatment available and argue that biomarker tests lack clinical validity. The debate on the ethical desirability of biomarker testing is currently polarized; advocates and opponents tend to focus on their own line of arguments. In this paper, we show how the method of reflective equilibrium (RE) can be used to systematically weigh the relevant arguments on both sides of the debate to decide whether to offer Alzheimer biomarker testing. In the tradition of RE, we reflect upon these arguments in light of their coherence with other argumentative elements, including relevant facts (e.g. on the clinical validity of the test), ethical principles, and theories on societal ideals or relevant concepts, such as autonomy. Our stance in the debate therefore rests upon previously set out in-depth arguments and reflects a wide societal perspective.


Assuntos
Doença de Alzheimer , Disfunção Cognitiva , Doença de Alzheimer/diagnóstico , Biomarcadores , Disfunção Cognitiva/diagnóstico , Diagnóstico Precoce , Humanos , Neuroimagem
11.
Public Health Ethics ; 15(3): 289-300, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36727101

RESUMO

Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy-as a right and as an ideal-we describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so.

12.
J Alzheimers Dis ; 79(2): 917-927, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33361592

RESUMO

BACKGROUND: Hope for future treatments to prevent or slow down dementia motivates researchers to strive for ever-earlier diagnoses of Alzheimer's disease (AD) based on biomarkers, even before symptoms occur. But is a biomarker-based early diagnosis desirable in clinical practice? OBJECTIVE: This study explores the ethical considerations that shape current clinical practice regarding early AD diagnostics and the use of biomarkers. METHODS: In this qualitative study, Dutch physicians were interviewed. Topics included physicians' views concerning early AD diagnosis in persons with no or mild cognitive impairment, physicians' considerations regarding current and expected future practices of early AD diagnosis, the use of biomarkers, and the use of the concepts preclinical and prodromal AD. We analyzed the transcripts using directed content analysis. RESULTS: 15 general practitioners, neurologists, and geriatricians in the Netherlands were interviewed. Most of them interpreted an early AD diagnosis with an early diagnosis of dementia. We identified six clusters of considerations sometimes in favor but most often against pursuing an early AD diagnosis in people with no or mild cognitive impairment that influence physicians' diagnostic decision-making: preferences and characteristics of persons, test characteristics, impact on care, type of setting, disease concepts, and issues on a societal level. CONCLUSION: The discussion concerning an early AD diagnosis based on biomarkers which is widely held in the scientific field, has not entered clinical practice structurally. A biomarker-based early diagnosis does not fit within Dutch physicians' views on what good care for people with no, subjective, or mild cognitive impairment should entail.


Assuntos
Doença de Alzheimer/diagnóstico , Atitude do Pessoal de Saúde , Médicos/psicologia , Idoso , Doenças Assintomáticas , Biomarcadores , Disfunção Cognitiva/diagnóstico , Diagnóstico Precoce , Feminino , Humanos , Entrevistas como Assunto , Masculino , Países Baixos , Qualidade da Assistência à Saúde , Terminologia como Assunto
14.
Gerontologist ; 61(5): 746-755, 2021 07 13.
Artigo em Inglês | MEDLINE | ID: mdl-33140824

RESUMO

BACKGROUND AND OBJECTIVES: The meaning of Alzheimer's disease (AD) is changing in research. It now refers to a pathophysiological process, regardless of whether clinical symptoms are present. In the lay literature, on the other hand, AD is understood as a form of dementia. This raises the question of whether researchers and the lay audience are still talking about the same thing. If not, how will these different understandings of AD shape perspectives on (societal) needs for people with AD? RESEARCH DESIGN AND METHODS: We use framing analysis to retrieve the understandings of the term AD that are upheld in the research literature and in national Dutch newspaper articles. We make explicit how the framings of AD steer our normative attitudes toward the disease. RESULTS: In the analyzed research articles, AD is framed as a pathological cascade, reflected by biomarkers, starting in cognitively healthy people and ending, inevitably, in dementia. In the lay literature, AD is used as a synonym for dementia, and an AD diagnosis is understood as an incentive to enjoy "the time that is left." DISCUSSION AND IMPLICATIONS: The two different uses of the term AD in research and in the lay literature may result in misunderstandings, especially those research framings that falsely imply that people with AD biomarkers will inevitably develop dementia. Adoption of the research understanding of AD in clinical practice will have normative implications for our view on priority setting in health care. For example, it legitimizes biomarker testing in people without dementia as improving "diagnostic" certainty.


Assuntos
Doença de Alzheimer , Doença de Alzheimer/diagnóstico , Atitude , Biomarcadores , Humanos
15.
Bioethics ; 33(1): 138-145, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30303259

RESUMO

In the hope of future treatments to prevent or slow down the disease, there is a strong movement towards an ever-earlier detection of Alzheimer's disease (AD). In conjunction with scientific developments, this has prompted a reconceptualization of AD, as a slowly progressive pathological process with a long asymptomatic phase. New concepts such as 'preclinical' and 'prodromal' AD have been introduced, raising a number of conceptual and ethical questions. We evaluate whether these new concepts are theoretically defensible, in light of theories of health and disease, and whether they should be understood as disease or as an at-risk state. We introduce a pragmatic view on disease concepts and argue that an evaluation of the reconceptualization of AD should also take its aims and effects into account, and assess their ethical acceptability. The reconceptualization of AD is useful to coordinate research into preventive strategies, and may potentially benefit future patients. However, in the short term, early detection and labelling of 'preclinical AD' can potentially harm people. Since there is no treatment available and the predictive value is unclear, it may only create a group of 'patients-in-waiting' who may suffer from anxiety, uncertainty and stigmatization, but will never actually develop dementia. We conclude that only if the promise of preventive medication materializes, will the reconceptualization of AD turn out unequivocally to be for the better. Otherwise, the reconceptualization may do more harm than good.


Assuntos
Doença de Alzheimer/diagnóstico , Formação de Conceito/ética , Teoria Ética , Filosofia Médica , Medicina Preventiva , Doença de Alzheimer/prevenção & controle , Doença de Alzheimer/psicologia , Ansiedade/etiologia , Progressão da Doença , Diagnóstico Precoce , Humanos , Estigma Social , Estereotipagem , Incerteza
16.
J Alzheimers Dis ; 66(4): 1309-1322, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30507575

RESUMO

BACKGROUND: The shift to defining Alzheimer's disease (AD) as a biological continuum, which is characterized by the presence of biomarkers instead of clinical symptoms, has sparked a widespread debate. Insight into the given arguments and their underlying moral values is crucial to ensure well-considered and appropriate AD biomarker testing in the future. OBJECTIVE: To critically review the arguments in favor of or against AD biomarker testing in people with no or mild cognitive impairment and to explicate their underlying moral values. METHODS: Seven databases were systematically searched for publications mentioning arguments of interest. Arguments are identified using qualitative data-analysis and evaluated within an ethical framework. RESULTS: Our search yielded 3,657 articles of which 34 met the inclusion criteria. We discuss the clusters of arguments separate from their evaluation and the assessment of the debate as a whole. The right to know, which derives from the moral value of respect for autonomy, is a central argument in favor of biomarker testing. On the other hand, fear of the disease and lack of a disease-modifying treatment may result in a negative balance of good over inflicted harms, which argues against its use. CONCLUSION: Critical evaluation and weighing of the given arguments in a specific context, within an ethical framework, demonstrates the necessity to differentiate between what we hope or expect from research and where we currently stand. While AD biomarkers may have an indispensable value for research, the current advantage for clinical practice appears limited.


Assuntos
Doença de Alzheimer/diagnóstico , Disfunção Cognitiva/diagnóstico , Ética Médica , Biomarcadores , Humanos
17.
J Med Ethics ; 44(12): 830-834, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30154216

RESUMO

Many healthy volunteers choose to take part in Alzheimer's disease (AD) prevention studies because they want to know whether they will develop dementia-and what they can do to reduce their risk-and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of AD biomarkers, claiming that research participants will be able to use AD biomarker information for personal purposes, such as planning ahead or making important life decisions. In this paper, the claim that AD biomarkers have personal utility for asymptomatic individuals is critically assessed. It demonstrates that in the absence of clinical validity, AD biomarkers cannot have personal utility and do not serve research participants' autonomy. Over the next few years, many research groups will be confronted with participants' preferences to learn the results of AD biomarker tests. When researchers choose to make results available upon explicit request, they should ensure adequate information provision and education, notably on the uncertain clinical significance of AD biomarker information. Routine disclosure of AD biomarkers to cognitively unimpaired individuals in research settings cannot be justified with an appeal to the personal utility of AD biomarker information.


Assuntos
Doença de Alzheimer/diagnóstico , Pesquisa Biomédica/ética , Voluntários Saudáveis , Medicina Preventiva/ética , Doença de Alzheimer/prevenção & controle , Doença de Alzheimer/psicologia , Apolipoproteína E4/análise , Biomarcadores/análise , Revelação , Humanos
18.
J Med Ethics ; 44(11): 734-738, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-30032106

RESUMO

Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice behaviour and the traditional theory of informed consent. Responsible ways of dealing with or solving these problems are considered. To this end, patient decisions aids (PDAs) are discussed as suitable interventions to support autonomous decision-making. However, current PDAs demand certain improvements in order to protect and promote autonomous decision-making. Based on a conception of autonomy, we will argue which type of improvements are needed.


Assuntos
Tomada de Decisão Clínica/ética , Consentimento Livre e Esclarecido/ética , Comportamento de Escolha/ética , Técnicas de Apoio para a Decisão , Ética Médica , Humanos
19.
BMC Med Ethics ; 19(1): 64, 2018 06 22.
Artigo em Inglês | MEDLINE | ID: mdl-29929500

RESUMO

BACKGROUND: Health checks or health screenings identify (risk factors for) disease in people without a specific medical indication. So far, the perspective of (potential) health check users has remained underexposed in discussions about the ethics and regulation of health checks. METHODS: In 2017, we conducted a qualitative study with lay people from the Netherlands (four focus groups). We asked what participants consider characteristics of good and bad health checks, and whether they saw a role for the Dutch government. RESULTS: Participants consider a good predictive value the most important characteristic of a good health check. Information before, during and after the test, knowledgeable and reliable providers, tests for treatable (risk factors for) disease, respect for privacy, no unnecessary health risks and accessibility are also mentioned as criteria for good health checks. Participants make many assumptions about health check offers. They assume health checks provide certainty about the presence or absence of disease, that health checks offer opportunities for health benefits and that the privacy of health check data is guaranteed. In their choice for provider and test they tend to rely more on heuristics than information. Participants trust physicians to put the interest of potential health check users first and expect the Dutch government to intervene if providers other than physicians failed to do so by offering tests with a low predictive value, or tests that may harm people, or by infringing the privacy of users. CONCLUSIONS: Assumptions of participants are not always justified, but they may influence the choice to participate. This is problematic because choices for checks with a low predictive value that do not provide health benefits may create uncertainty and may cause harm to health; an outcome diametrically opposite to the one intended. Also, this may impair the relationship of trust with physicians and the Dutch government. To further and protect autonomous choice and to maintain trust, we recommend the following measures to timely adjust false expectations: advertisements that give an accurate impression of health check offers, and the installation of a quality mark.


Assuntos
Programas de Rastreamento , Atitude Frente a Saúde , Confidencialidade , Feminino , Grupos Focais , Regulamentação Governamental , Nível de Saúde , Heurística , Humanos , Masculino , Programas de Rastreamento/ética , Programas de Rastreamento/legislação & jurisprudência , Programas de Rastreamento/psicologia , Países Baixos , Relações Médico-Paciente , Confiança , Procedimentos Desnecessários/ética , Procedimentos Desnecessários/psicologia
20.
BMC Med Ethics ; 18(1): 55, 2017 Oct 02.
Artigo em Inglês | MEDLINE | ID: mdl-28969671

RESUMO

BACKGROUND: Health checks identify (risk factors for) disease in people without symptoms. They may be offered by the government through population screenings and by other providers to individual users as 'personal health checks'. Health check providers' perspective of 'good' health checks may further the debate on the ethical evaluation and possible regulation of these personal health checks. METHODS: In 2015, we interviewed twenty Dutch health check providers on criteria for 'good' health checks, and the role these criteria play in their practices. RESULTS: Providers unanimously formulate a number of minimal criteria: Checks must focus on (risk factors for) treatable/preventable disease; Tests must be reliable and clinically valid; Participation must be informed and voluntary; Checks should provide more benefits than harms; Governmental screenings should be cost-effective. Aspirational criteria mentioned were: Follow-up care should be provided; Providers should be skilled and experienced professionals that put the benefit of (potential) users first; Providers should take time and attention. Some criteria were contested: People should be free to test on any (risk factor for) disease; Health checks should only be performed in people at high risk for disease that are likely to implement health advice; Follow up care of privately funded tests should not drain on collective resources. Providers do not always fulfil their own criteria. Their reasons reveal conflicts between criteria, conflicts between criteria and other ethical values, and point to components in the (Dutch) organisation of health care that hinder an ethical provision of health checks. Moreover, providers consider informed consent a criterion that is hard to establish in practice. CONCLUSIONS: According to providers, personal health checks should meet the same criteria as population screenings, with the exception of cost-effectiveness. Providers do not always fulfil their own criteria. Results indicate that in thinking about the ethics of health checks potential conflicts between criteria and underlying values should be explicated, guidance in weighing of criteria should be provided and the larger context should be taken into account: other actors than providers need to take up responsibility, and ideally benefits and harms of health checks should be weighed against other measures targeting (risk factors for) disease.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/ética , Programas de Rastreamento/ética , Prevenção Primária/ética , Doenças Cardiovasculares/prevenção & controle , Análise Custo-Benefício , Feminino , Indicadores Básicos de Saúde , Humanos , Consentimento Livre e Esclarecido , Entrevistas como Assunto , Masculino , Doenças Metabólicas/prevenção & controle , Neoplasias/prevenção & controle , Aceitação pelo Paciente de Cuidados de Saúde , Prevenção Primária/normas , Pesquisa Qualitativa
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