Integration of ethical considerations into HTA reports: an analysis of integration levels using a systematic review

2021 ◽  
Vol 37 (1) ◽  
Author(s):  
Georges-Auguste Legault ◽  
Hubert Gagnon ◽  
Monelle Parent ◽  
Christian A. Bellemare ◽  
Jean-Pierre Béland ◽  
...  
Keyword(s):  
Social Norms ◽  
Qualitative Methodology ◽  
Ethical Issues ◽  
Ethical Analysis ◽  
Decision Makers ◽  
Ethical Considerations ◽  
Ethical Assessment ◽  
Moral Framework ◽  
Organizational Issues ◽  
Integration Levels

Abstract Objective To describe the type and level of ethical integration in published health technology assessment (HTA) reports and systematically identify the ethical approaches utilized. Methods A literature search was conducted with the Google™ search engine using the keyword “ethic” between 1 January 2015 and 20 August 2019. Only HTA assessment reports with a section on ethics were retained and classified according to their level of ethical integration: no ethical analysis, ethical issues highlighted, assessments according to legal or social norms, and assessments from a moral or axiological perspective—using a qualitative methodology to distinguish such integration. Results This review yielded 188 reports with a section identified as being on ethics, produced by seventeen HTA agencies in eleven countries. One hundred and thirty-six reports did not develop an ethical analysis, thirty-one highlighted ethical issues, seventeen conducted a norm-based ethical assessment using a descriptive approach grounded in social norms, and four developed an assessment grounded in a moral or axiological perspective. The bioethical “four-principles” framework was used, but mainly for presenting ethical issues and not as a moral framework. Conclusions The majority of reports featuring a section on ethics mention ethical considerations without ethical analysis. Ethical issues are grouped with legal, social, and organizational issues and treated as contextual considerations that decision makers should be aware of. When reports present systematic norm-based ethical assessments from a descriptive perspective or ethical assessment based on a moral or axiological perspective, there is a tendency to ground these analyses in frameworks created for the purpose and reliant on a concept of ethics supporting them.

Experiences of Hearing Parents Following the Diagnosis of Their Child's Hearing Loss

2018 ◽  
Vol 30 (2) ◽  
Author(s):  
Ronel Sanet Davids ◽  
Mariana De Jager
Keyword(s):  
South Africa ◽  
Hearing Loss ◽  
Thematic Analysis ◽  
Qualitative Methodology ◽  
Cape Town ◽  
Best Interest ◽  
Ethical Considerations ◽  
Hearing Parents ◽  
Phenomenological Design ◽  
Depth Interviews

An estimated 90 per cent of children with a hearing loss are born to hearing parents. Most parents are unprepared for the diagnosis, leaving them shocked, confused, sad and bewildered. This article reports on a study aimed at exploring and describing the experiences of hearing parents regarding their child’s hearing loss. The study was conducted in Cape Town, South Africa. The study applied a qualitative methodology with a phenomenological design. Purposive sampling was implemented and data were collected by means of unstructured in-depth interviews. Data were analysed using thematic analysis. Ethical considerations were adhered to. The main findings of the study indicated that hearing parents experience a myriad of emotions when their child is diagnosed with a hearing loss. This study advocates for various stakeholders in the helping profession to collaborate in the best interest of hearing parents and a child with hearing loss. Furthermore, these findings serve as guidelines for professionals working with these families.

Utilising Indigenous Knowledge or Crime against Humanity?: A Critical Engagement with the Debate Generated by Alick Macheso’s Use of Manhood to Treat Nhova (Sunken Fontanelle)

2019 ◽  
Vol 7 (1) ◽  
Author(s):  
Charles Tembo ◽  
Allan Maganga ◽  
Peterson Dewah
Keyword(s):  
Ethical Issues ◽  
General Tendency ◽  
Ethical Values ◽  
Ethical Considerations ◽  
Lower Back ◽  
African Ethics ◽  
Cultural Grounding ◽  
The Face ◽  
Left And Right ◽  
Points Of View

 This article presents various points of view regarding the treatment of sunken fontanelle by various communities as ignited by the controversial practice of kutara(a practice that involves the father of a child sliding his penis from the lower part of the left and right cheeks to the top of the head, as well as from the lower part of the face to the top of the head, and from the lower back part of the head to the top). The story of Alick Macheso’s use of his manhood to treat nhova (sunken fontanelle) opened a Pandora’s box. The story not only attracted the attention of critics from diverse cultural and ethical backgrounds, but revealed multi-ethnic positions. That is, reactions were steeped in a multiplicity of intellectual, religious and even cultural grounding. Reactions ranged from accusations of backwardness and absurdity, through to medical and Christian orientations toward the treatment of nhova. The overarching idea is that there is a general tendency to dismiss the age-old practice of kutara,coupled with an uncritical celebration of certain positions. The debate that ensued following publication of the story seemed to revolve around ethical considerations. The school of thought that dismisses kutara with disdain regards it as unethical and unimaginable in the present-day world—it is redolent with insinuations of absurdity on the part of those that live and celebrate it. We contend that the raging debate that followed the publication of the story can best be conceptualised within the context of African ethics. We note that kutara has relevance to the spirituality, ethical values, privacy, and protection of children’s rights, among other ethical issues. It is hoped that the article will stir further debate and encourage more research among information practitioners, scholars and researchers into the ethical issues surrounding the treatment of sunken fontanelle in various African communities. It argues for an Afrocentric conceptualisation of phenomena in order to contribute to debates on the renaissance of African cultures, and stresses that it is imperative to harness the life-furthering age-old traditions in African ontological existence.

Recruitment Policies of Non-EU/EEA Nurses and Ethical Issues

2018 ◽  
Author(s):  
Angèle Flora Mendy
Keyword(s):  
Public Opinion ◽  
Health Professionals ◽  
Ethical Issues ◽  
Health Workers ◽  
Ethical Considerations ◽  
Host Countries ◽  
Ethical Argument ◽  
The Past ◽  
The United Kingdom ◽  
Institutional Legacies

By examining policies of recruiting non-EU/EEA health workers and how ethical considerations are taken into account when employing non-EU/EEA nurses in the United Kingdom, France, and Switzerland, this chapter intends to show that the use of the so-called ‘ethical’ argument to convince national public opinion of the relevance of restrictive recruitment policies is recent (since the 1990s). The analysis highlights the fact that in addition to the institutional legacies, qualification and skills—through the process of their recognition—play an important role in the opening or restriction of the labour market to health professionals from the Global South. The legacy of the past also largely determines the place offered to non-EU/EEA health professionals in the different health systems of host countries.

Dilemmas of nudging in public health: an ethical analysis of a Danish pamphlet

2020 ◽  
Author(s):  
Jacob Busch ◽  
Emilie Kirstine Madsen ◽  
Antoinette Mary Fage-Butler ◽  
Marianne Kjær ◽  
Loni Ledderer
Keyword(s):  
Public Health ◽  
Ethical Issues ◽  
Screening Programme ◽  
Screening Program ◽  
Ethical Analysis ◽  
Choice Making ◽  
The Face ◽  
Information Materials ◽  
The Individual ◽  
To Receive

Summary Nudging has been discussed in the context of public health, and ethical issues raised by nudging in public health contexts have been highlighted. In this article, we first identify types of nudging approaches and techniques that have been used in screening programmes, and ethical issues that have been associated with nudging: paternalism, limited autonomy and manipulation. We then identify nudging techniques used in a pamphlet developed for the Danish National Screening Program for Colorectal Cancer. These include framing, default nudge, use of hassle bias, authority nudge and priming. The pamphlet and the very offering of a screening programme can in themselves be considered nudges. Whether nudging strategies are ethically problematic depend on whether they are categorized as educative- or non-educative nudges. Educative nudges seek to affect people’s choice making by engaging their reflective capabilities. Non-educative nudges work by circumventing people’s reflective capabilities. Information materials are, on the face of it, meant to engage citizens’ reflective capacities. Recipients are likely to receive information materials with this expectation, and thus not expect to be affected in other ways. Non-educative nudges may therefore be particularly problematic in the context of information on screening, also as participating in screening does not always benefit the individual.

scholarly journals Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

2020 ◽  
Vol 11 (05) ◽  
pp. 755-763
Author(s):  
Shibani Kanungo ◽  
Jayne Barr ◽  
Parker Crutchfield ◽  
Casey Fealko ◽  
Neelkamal Soares
Keyword(s):  
Genetic Testing ◽  
Best Practices ◽  
Health Care Providers ◽  
Genetic Information ◽  
Ethical Issues ◽  
Interdisciplinary Approach ◽  
Care Providers ◽  
Ethical Considerations ◽  
Electronic Health ◽  
Genetic Results

Abstract Background Advances in technology and access to expanded genetic testing have resulted in more children and adolescents receiving genetic testing for diagnostic and prognostic purposes. With increased adoption of the electronic health record (EHR), genetic testing is increasingly resulted in the EHR. However, this leads to challenges in both storage and disclosure of genetic results, particularly when parental results are combined with child genetic results. Privacy and Ethical Considerations Accidental disclosure and erroneous documentation of genetic results can occur due to the nature of their presentation in the EHR and documentation processes by clinicians. Genetic information is both sensitive and identifying, and requires a considered approach to both timing and extent of disclosure to families and access to clinicians. Methods This article uses an interdisciplinary approach to explore ethical issues surrounding privacy, confidentiality of genetic data, and access to genetic results by health care providers and family members, and provides suggestions in a stakeholder format for best practices on this topic for clinicians and informaticians. Suggestions are made for clinicians on documenting and accessing genetic information in the EHR, and on collaborating with genetics specialists and disclosure of genetic results to families. Additional considerations for families including ethics around results of adolescents and special scenarios for blended families and foster minors are also provided. Finally, administrators and informaticians are provided best practices on both institutional processes and EHR architecture, including security and access control, with emphasis on the minimum necessary paradigm and parent/patient engagement and control of the use and disclosure of data. Conclusion The authors hope that these best practices energize specialty societies to craft practice guidelines on genetic information management in the EHR with interdisciplinary input that addresses all stakeholder needs.

Situating requests for medical aid in dying within the broader context of end-of-life care: ethical considerations

2018 ◽  
Vol 45 (2) ◽  
pp. 106-111 ◽  
Author(s):  
Lori Seller ◽  
Marie-Ève Bouthillier ◽  
Veronique Fraser
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Retrospective Chart Review ◽  
Median Number ◽  
Life Care ◽  
Ethical Considerations ◽  
Term Care ◽  
Medical Aid ◽  
Aid In Dying

BackgroundMedical aid in dying (MAiD) was introduced in Quebec in 2015. Quebec clinical guidelines recommend that MAiD be approached as a last resort when other care options are insufficient; however, the law sets no such requirement. To date, little is known about when and how requests for MAiD are situated in the broader context of decision-making in end-of-life care; the timing of MAiD raises potential ethical issues.MethodsA retrospective chart review of all MAiD requests between December 2015 and June 2017 at two Quebec hospitals and one long-term care centre was conducted to explore the relationship between routine end-of-life care practices and the timing of MAiD requests.ResultsOf 80 patients requesting MAiD, 54% (43) received the intervention. The median number of days between the request for MAiD and the patient’s death was 6 days. The majority of palliative care consults (32%) came less than 7 days prior to the MAiD request and in another 25% of cases occurred the day of or after MAiD was requested. 35% of patients had no level of intervention form, or it was documented as 1 or 2 (prolongation of life remains a priority) at the time of the MAiD request and 19% were receiving life-prolonging interventions.InterpretationWe highlight ethical considerations relating to the timing of MAiD requests within the broader context of end-of-life care. Whether or not MAiD is conceptualised as morally distinct from other end-of-life options is likely to influence clinicians’ approach to requests for MAiD as well as the ethical importance of our findings. We suggest that in the wake of the 2015 legislation, requests for MAiD have not always appeared to come after an exploration of other options as professional practice guidelines recommend.

scholarly journals Religious Engagement and the Migration Issue: Towards Reconciling Political and Moral Duty

Religions ◽  
2020 ◽  
Vol 11 (5) ◽  
pp. 236
Author(s):  
Joanna Kulska
Keyword(s):  
Ethical Issues ◽  
Decision Makers ◽  
Religious Communities ◽  
The Political ◽  
Political Decision ◽  
Short Term ◽  
Nation States ◽  
Religious Engagement ◽  
The Face ◽  
Religious Actors

The increasingly acknowledged post-secular perspective has resulted in the emergence of some new approaches theorizing this phenomenon. One such approach has been the concept of religious engagement, which calls for the redefinition of the perception of religious non-state actors towards including them as important partners in the process of identifying and realizing political goals. According to this view, due to the multidimensional role played by religious communities and non-state religious actors, they need to be recognized as pivotal in creating a new form of knowledge generated through encounter and dialogue of the political decision-makers with these subjects. Among numerous others, the challenge of migration calls for enhanced debate referring to both political and ethical issues. When such a perspective is applied, the question is raised of the duties and limits of nation-states using more or less harsh political measures towards refugees and migrants based on the concept of security, but also short-term political goals. In the face of a state’s lack of will or capacity to deal with the problem of migration, the question of religion serving not only as the service-provider but also as the “trend-setter” with regard to fundamental ethical questions needs to be considered.

scholarly journals Bioethics Teaching and Assessment: My Experience of Three Institutes

2014 ◽  
Vol 5 (2) ◽  
pp. 44-48 ◽  
Author(s):  
Zoheb Rafique
Keyword(s):  
Ethical Issues ◽  
Ethical Dilemmas ◽  
Ethical Analysis ◽  
Assessment Methods ◽  
Undergraduate Level

This paper describes my experience of teaching bioethics in different institutes and degree courses at undergraduate level. Bioethics is being taught to improve the understanding of the ethical issues in the field of medicine. The students are being trained in bioethics to recognize and resolve different ethical dilemmas and also to combat the situations where ethical analysis is needed. This paper also focuses on teaching and assessment methods for undergraduate courses. DOI: http://dx.doi.org/10.3329/bioethics.v5i2.19577 Bangladesh Journal of Bioethics 2014; 5(2):44-48

scholarly journals Epistemic and ethical considerations in the direct-to-consumer health and ancestry genetic testing process

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Katherine Huerne
Keyword(s):  
Genetic Testing ◽  
Quantitative Methods ◽  
Ethical Issues ◽  
Social Issues ◽  
Clear Understanding ◽  
Feminist Ethics ◽  
Ethical Considerations ◽  
Ethical Implications ◽  
Direct To Consumer ◽  
The Cost

Background: Direct-to-consumer genetic testing (DTC-GT) is a popular and fast-growing field within the healthcare industry. Consumers often pursue DTC-GT without a clear understanding of its epistemic and medical limitations. This report will present the current state of DTC-GT technology, and highlight the ethical, legal and social issues of DTC-GT. Methods: Quantitative methods such as systematic reviews were used to evaluate the field of DTC-GT. Experimental data was taken from randomized control trials and case studies of 23andMe. Qualitative methods such as newspaper articles and surveys were also used. Relevant policies and regulatory information were analyzed in the context of 23andMe. Broader ethical issues are analyzed from the social disability model and feminist ethics frameworks. Results: Several aspects of direct-to-consumer genetic testing are outlined: (i) regulatory and legal distinctions of DTC-GT that separate its use from conventional genetic testing, (ii) epistemic issues of the genetic testing process within the direct-to-consumer context, and (iii) ethical considerations of DTC-GT in regard to genetic health and genetic ancestry. Conclusion: This report does not take a position for or against the use of DTC-GT; rather, it highlights the key ethical issues often missed in the DTC-GT process. There is no perfect method for understanding genetic health and race. DTC-GT offer consumers the ease and power of taking genetic data ‘in their own hands’, at the cost of exacerbating geneticization and race essentialism. Until further work is done to address the epistemic, regulatory and legal issues, ethical implications of DTC-GT usage will continue to exist.

De glazen deur

KWALON ◽  
2019 ◽  
Vol 24 (2) ◽  
Author(s):  
Sofie Sergeant ◽  
Leendert van de Merbel
Keyword(s):  
Ethical Issues ◽  
Collaborative Reflection ◽  
Participatory Action ◽  
Ethical Considerations ◽  
Policy And Practice ◽  
Target Groups ◽  
Collective Inquiry ◽  
Creative Research ◽  
Working Together ◽  
Group Members

Access to the target group In participatory action research (PAR) the research team should include researchers and experts by experience (and their allies affected by the issue). PAR emphasizes collective inquiry and contribution to changes in policy and practice. In their opening essay Sergeant and Van de Merbel state that it is not enough to promote PAR as a vital way in bringing positive change in policy and practice. In order to conduct PAR in an ethical and just way, one needs to create room, space and time for PAR. PAR is more than a method; it needs time, good overthinking, collaborative reflection, creative research methods, coaching and training for all research group members, and – as Xavier Moonen states in his reply – sometimes also protection of vulnerable people. Moonen argues that this vulnerability should be taken into account and experts by experience should be protected from tokenism and research that does not meet their interests. This means, according to Moonen, that ethical considerations must be made. Gatekeepers should keep in mind that participation is a basic right and that pro’s and con’s should be considered in that light. In reaction to Moonen, Sergeant presents the ‘Working together, learning together’ and the results that come from this research project. She pleads for respecting intergroup-diversity within target groups and for looking beyond procedural ethical issues towards crossing the boundaries between dis- and ability.

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