scholarly journals Decision-making approaches in transgender healthcare: conceptual analysis and ethical implications

2021 ◽  
Author(s):  
Karl Gerritse ◽  
Laura A. Hartman ◽  
Marijke A. Bremmer ◽  
Baudewijntje P. C. Kreukels ◽  
Bert C. Molewijk
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Evidence Base ◽  
Standards Of Care ◽  
Ethical Challenges ◽  
Ethical Implications ◽  
Consultation Room ◽  
Care Models ◽  
Moral Dimensions ◽  
Explicit Discussion

AbstractOver the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the (biomedical) evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the ‘Standards of Care’ and the so-called ‘Informed Consent Model’. In these care models, ethical notions and principles such as ‘decision-making’ and ‘autonomy’ are often referred to, but left unsubstantiated. This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the ‘Standards of Care’ and ‘Informed Consent Model’ currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders’ ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process.

scholarly journals The Distinct Wrong of Deepfakes

2021 ◽  
Author(s):  
Adrienne de Ruiter
Keyword(s):  
Digital Data ◽  
Main Argument ◽  
Ethical Challenges ◽  
Ethical Implications ◽  
Digital Representations ◽  
Distinctive Aspect ◽  
Moral Dimensions ◽  
Audio Files ◽  
Potential Use ◽  
Identity Protection

AbstractDeepfake technology presents significant ethical challenges. The ability to produce realistic looking and sounding video or audio files of people doing or saying things they did not do or say brings with it unprecedented opportunities for deception. The literature that addresses the ethical implications of deepfakes raises concerns about their potential use for blackmail, intimidation, and sabotage, ideological influencing, and incitement to violence as well as broader implications for trust and accountability. While this literature importantly identifies and signals the potentially far-reaching consequences, less attention is paid to the moral dimensions of deepfake technology and deepfakes themselves. This article will help fill this gap by analysing whether deepfake technology and deepfakes are intrinsically morally wrong, and if so, why. The main argument is that deepfake technology and deepfakes are morally suspect, but not inherently morally wrong. Three factors are central to determining whether a deepfake is morally problematic: (i) whether the deepfaked person(s) would object to the way in which they are represented; (ii) whether the deepfake deceives viewers; and (iii) the intent with which the deepfake was created. The most distinctive aspect that renders deepfakes morally wrong is when they use digital data representing the image and/or voice of persons to portray them in ways in which they would be unwilling to be portrayed. Since our image and voice are closely linked to our identity, protection against the manipulation of hyper-realistic digital representations of our image and voice should be considered a fundamental moral right in the age of deepfakes.

Ethical and Cultural Considerations in Informed Consent in Botswana

2007 ◽  
Vol 14 (4) ◽  
pp. 503-509 ◽  
Author(s):  
Sheila Shaibu
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Nurse Educators ◽  
Cultural Practices ◽  
Culturally Sensitive ◽  
Ethical Challenges ◽  
Research Participants ◽  
Cultural Considerations ◽  
Conducting Research

Reflections on my experience of conducting research in Botswana are used to highlight tensions and conflicts that arise from adhering to the western conceptualization of bioethics and the need to be culturally sensitive when carrying out research in one's own culture. Cultural practices required the need to exercise discretionary judgement guided by respect for the culture and decision-making protocols of the research participants. Ethical challenges that arose are discussed. The brokerage role of nurse educators and leaders in contextualizing western bioethics is emphasized.

scholarly journals Informed Consent and Decision Making Among Participants in Novel-Design Phase I Oncology Trials

2017 ◽  
Vol 13 (10) ◽  
pp. e863-e873 ◽  
Author(s):  
Katherine E. Reeder-Hayes ◽  
Megan C. Roberts ◽  
Gail E. Henderson ◽  
Elizabeth C. Dees
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Phase I ◽  
Treatment Options ◽  
Research Participation ◽  
Predictive Biomarker ◽  
Ethical Challenges ◽  
Phase I Clinical Trials ◽  
Standard Drug ◽  
Experimental Drugs

Background: Although phase I clinical trials are the gateway to progress in cancer therapies, this setting poses ethical challenges to ensure that patients provide consent free from misunderstandings of therapeutic intent or unrealistic expectations of benefit. The design of phase I oncology trials has evolved rapidly over time and today includes more targeted agents and combinations of experimental drugs with standard drugs, which may further complicate how patients understand phase I research participation. Methods: We conducted semistructured interviews regarding motivations, decision making, and understanding of trial purpose nested within a phase I clinical trial of a novel PI3kinase inhibitor combined with a standard oral chemotherapy in 18 participants. Results: Fewer than half of patients correctly identified the safety and dosing objectives. The inclusion of a targeted agent was attractive to participants and was perceived as an indicator of less toxic or more efficacious therapy, with less appreciation for added risks. The significance of a cellular drug target, without a known predictive biomarker of response, was unclear to patients. The inclusion of a standard drug in the regimen attracted patients with more treatment options than traditional first-in-human participants. Patients frequently expressed a realistic understanding of prognosis and uncertainty of benefit, but simultaneous hopes for extraordinary outcomes. Conclusion: Novel phase I oncology trial designs may attract patients with less constrained treatment options, but the inclusion of targeted drugs and combinations including standard chemotherapies is likely to complicate understanding of safety and dosing objectives and likelihood of personal benefit for purposes of informed consent.

scholarly journals Article 5: The Role of Parents in the Proxy Informed Consent Process in Medical Research involving Children

2020 ◽  
Vol 28 (3) ◽  
pp. 521-546
Author(s):  
Sheila Varadan
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Medical Research ◽  
Well Being ◽  
Ethical Challenges ◽  
Research Setting ◽  
Role Of Parents ◽  
Article 5 ◽  
The Relationship

Abstract Medical research involving child subjects has led to advances in medicine that have dramatically improved the lives, health and well-being of children. Yet, determining when and under what conditions a child should be enrolled in medical research remains an ethically vexing question in research ethics. At the crux of the issue is the free and informed consent of the child participant. A child, who is presumed legally incompetent, or lacks sufficient understanding to exercise autonomous decision-making, will not be able to express free and informed consent in the research setting. Rather than exclude all such children from medical research, a parent (or legal guardian) is designated as a proxy to consent on the child’s behalf. However, the concept of proxy informed consent and the framework for its implementation present practical and ethical challenges for researchers, particularly in navigating the relationship between proxy decision-makers and child subjects in the medical research setting. Article 5 of the uncrc may offer guidance on this point: (1) it places boundaries around how parental authority should be exercised; (2) it offers a model for parent-child decision-making that is participatory, collaborative and linked to the child’s enjoyment of rights under the uncrc; (3) it respects and supports the autonomy of child participants by recognising their evolving capacities to give informed consent. This paper concludes that greater consideration should be given to Article 5 as a complementary framework for researchers engaged in medical research involving children.

Ethics in Social Research

2018 ◽  
Author(s):  
Steve Bruce
Keyword(s):  
Informed Consent ◽  
Data Collection ◽  
Research Ethics ◽  
Social Research ◽  
Medical Interventions ◽  
Ethical Implications ◽  
Social Researcher ◽  
Naturally Occurring ◽  
The Social ◽  
Collection Phase

It is right that social researchers consider the ethical implications of their work, but discussion of research ethics has been distorted by the primacy of the ‘informed consent’ model for policing medical interventions. It is remarkably rare for the data collection phase of social research to be in any sense harmful, and in most cases seeking consent from, say, members of a church congregation would disrupt the naturally occurring phenomena we wish to study. More relevant is the way we report our research. It is in the disparity between how people would like to see themselves described and explained and how the social researcher describes and explains them that we find the greatest potential for ill-feeling, and even here it is slight.

Patellar fractures in cats: Repair techniques and treatment decision-making

2021 ◽  
Vol 23 (7) ◽  
pp. 649-661
Author(s):  
Sorrel J Langley-Hobbs
Keyword(s):  
Decision Making ◽  
Case Reports ◽  
Case Series ◽  
Treatment Decision ◽  
Evidence Base ◽  
Treatment Technique ◽  
Treatment Decision Making ◽  
Fracture Types ◽  
Patellar Fractures ◽  
Repair Techniques

Practical relevance: While feline patellar fractures are not commonly encountered in practice, they tend to be found more often in younger cats; no breed or sex predispositions are recognised. If there is no evidence of a traumatic aetiology, the cat may be suspected of having patellar fracture and dental anomaly syndrome (PADS). Patellar fractures are easy to diagnose on lateral radiographs and there are several different fracture types. The type of fracture, the age of the cat at fracture occurrence and whether there is suspicion of a pathological aetiology are all relevant when considering treatment technique. Clinical challenges: While some cats with patellar fractures will do well with conservative management, surgical treatment is often indicated and decision-making can be challenging. Evidence base: Information and recommendations provided in this review are based on the literature and the author’s own clinical experience. There are several publications on PADS, but there is limited evidence as to what the underlying cause of this condition is, and the best method for managing patellar fractures is still an area where more research is needed. Aim: This review aims to gather the papers, case series and case reports published over the past few decades in order to discuss how best to manage different types of patellar fractures.

scholarly journals Conducting epigenetics research with refugees and asylum seekers: attending to the ethical challenges

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Faten Taki ◽  
Inmaculada de Melo-Martin
Keyword(s):  
Asylum Seekers ◽  
Evidence Base ◽  
Ethical Challenges ◽  
Physical And Mental Health ◽  
Healthcare Barriers ◽  
Humanitarian Action ◽  
Disease States ◽  
Conducting Research ◽  
Refugees And Asylum Seekers ◽  
Epigenetic Research

AbstractAn increase in global violence has forced the displacement of more than 70 million people, including 26 million refugees and 3.5 asylum seekers. Refugees and asylum seekers face serious socioeconomic and healthcare barriers and are therefore particularly vulnerable to physical and mental health risks, which are sometimes exacerbated by immigration policies and local social discriminations. Calls for a strong evidence base for humanitarian action have encouraged conducting research to address the barriers and needs of refugees and asylum seekers. Given the role of epigenetics factors to mediate the effect of psychological and environmental exposures, epigenetic modifications have been used as biomarkers for life adversity and disease states. Therefore, epigenetic research can be potentially beneficial to address some of the issues associated with refugees and asylum seekers. Here, we review the value of previous and ongoing epigenetic studies with traumatized populations, explore some of the ethical challenges associated with epigenetic research with refugees and asylees and offer suggestions to address or mitigate some of these challenges. Researchers have an ethical responsibility to implement strategies to minimize the harms and maximize the short and long-term benefits to refugee and asylee participants.

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