Search results
Found 2745 matches for
Ethical frameworks should be applied to computational modelling of infectious disease interventions
This perspective is part of an international effort to improve epidemiological models with the goal of reducing the unintended consequences of infectious disease interventions. The scenarios in which models are applied often involve difficult trade-offs that are well recognised in public health ethics. Unless these trade-offs are explicitly accounted for, models risk overlooking contested ethical choices and values, leading to an increased risk of unintended consequences. We argue that such risks could be reduced if modellers were more aware of ethical frameworks and had the capacity to explicitly account for the relevant values in their models. We propose that public health ethics can provide a conceptual foundation for developing this capacity. After reviewing relevant concepts in public health and clinical ethics, we discuss examples from the COVID-19 pandemic to illustrate the current separation between public health ethics and infectious disease modelling. We conclude by describing practical steps to build the capacity for ethically aware modelling. Developing this capacity constitutes a critical step towards ethical practice in computational modelling of public health interventions, which will require collaboration with experts on public health ethics, decision support, behavioural interventions, and social determinants of health, as well as direct consultation with communities and policy makers.
Research Opportunities and Ethical Considerations for Heart and Lung Xenotransplantation Research: A report from a National Heart, Lung, and Blood Institute workshop.
Xenotransplantation offers the potential to meet the critical need for heart and lung transplantation presently constrained by the current human donor organ supply. Much was learned over the past decades regarding gene editing to prevent the immune activation and inflammation that cause early organ injury, and strategies for maintenance immunosuppression to promote longer-term xenograft survival. However, many scientific questions remain regarding further requirements for genetic modification of donor organs, appropriate contexts for xenotransplantation research (including non-human primates, recently deceased humans, and living human recipients), and risk of xenozoonotic disease transmission. Related ethical questions include appropriate selection of clinical trial participants, challenges with obtaining informed consent, animal rights and welfare considerations, and cost. Research involving recently deceased humans has also emerged as a potential novel way to understand how xeno-organs will impact the human body. Clinical xenotransplantation and research involving decedents also raise ethical questions, and will require consensus regarding regulatory oversight and protocol review. These considerations and the related opportunities for xenotransplantation research were discussed in a workshop sponsored by the National Heart, Lung, and Blood Institute, and are summarized in this meeting report.
Australian Public Perspectives on Genomic Newborn Screening: Risks, Benefits, and Preferences for Implementation.
Recent dramatic reductions in the timeframe in which genomic sequencing can deliver results means its application in time-sensitive screening programs such as newborn screening (NBS) is becoming a reality. As genomic NBS (gNBS) programs are developed around the world, there is an increasing need to address the ethical and social issues that such initiatives raise. This study therefore aimed to explore the Australian public's perspectives and values regarding key gNBS characteristics and preferences for service delivery. We recruited English-speaking members of the Australian public over 18 years of age via social media; 75 people aged 23-72 participated in 1 of 15 focus groups. Participants were generally supportive of introducing genomic sequencing into newborn screening, with several stating that the adoption of such revolutionary and beneficial technology was a moral obligation. Participants consistently highlighted receiving an early diagnosis as the leading benefit, which was frequently linked to the potential for early treatment and intervention, or access to other forms of assistance, such as peer support. Informing parents about the test during pregnancy was considered important. This study provides insights into the Australian public's views and preferences to inform the delivery of a gNBS program in the Australian context.
The selective deployment of AI in healthcare: An ethical algorithm for algorithms.
Machine-learning algorithms have the potential to revolutionise diagnostic and prognostic tasks in health care, yet algorithmic performance levels can be materially worse for subgroups that have been underrepresented in algorithmic training data. Given this epistemic deficit, the inclusion of underrepresented groups in algorithmic processes can result in harm. Yet delaying the deployment of algorithmic systems until more equitable results can be achieved would avoidably and foreseeably lead to a significant number of unnecessary deaths in well-represented populations. Faced with this dilemma between equity and utility, we draw on two case studies involving breast cancer and melanoma to argue for the selective deployment of diagnostic and prognostic tools for some well-represented groups, even if this results in the temporary exclusion of underrepresented patients from algorithmic approaches. We argue that this approach is justifiable when the inclusion of underrepresented patients would cause them to be harmed. While the context of historic injustice poses a considerable challenge for the ethical acceptability of selective algorithmic deployment strategies, we argue that, at least for the case studies addressed in this article, the issue of historic injustice is better addressed through nonalgorithmic measures, including being transparent with patients about the nature of the current epistemic deficits, providing additional services to algorithmically excluded populations, and through urgent commitments to gather additional algorithmic training data from excluded populations, paving the way for universal algorithmic deployment that is accurate for all patient groups. These commitments should be supported by regulation and, where necessary, government funding to ensure that any delays for excluded groups are kept to the minimum. We offer an ethical algorithm for algorithms-showing when to ethically delay, expedite, or selectively deploy algorithmic systems in healthcare settings.
Tracing Tomorrow: young people's preferences and values related to use of personal sensing to predict mental health, using a digital game methodology.
BACKGROUND: Use of personal sensing to predict mental health risk has sparked interest in adolescent psychiatry, offering a potential tool for targeted early intervention. OBJECTIVES: We investigated the preferences and values of UK adolescents with regard to use of digital sensing information, including social media and internet searching behaviour. We also investigated the impact of risk information on adolescents' self-understanding. METHODS: Following a Design Bioethics approach, we created and disseminated a purpose-built digital game (www.tracingtomorrow.org) that immersed the player-character in a fictional scenario in which they received a risk assessment for depression Data were collected through game choices across relevant scenarios, with decision-making supported through clickable information points. FINDINGS: The game was played by 7337 UK adolescents aged 16-18 years. Most participants were willing to personally communicate mental health risk information to their parents or best friend. The acceptability of school involvement in risk predictions based on digital traces was mixed, due mainly to privacy concerns. Most participants indicated that risk information could negatively impact their academic self-understanding. Participants overwhelmingly preferred individual face-to-face over digital options for support. CONCLUSIONS: The potential of digital phenotyping in supporting early intervention in mental health can only be fulfilled if data are collected, communicated and actioned in ways that are trustworthy, relevant and acceptable to young people. CLINICAL IMPLICATIONS: To minimise the risk of ethical harms in real-world applications of preventive psychiatric technologies, it is essential to investigate young people's values and preferences as part of design and implementation processes.
Carbon Accounting in the Digital Industry: The Need to Move towards Decision Making in Uncertainty
In this paper, we present findings from a qualitative interview study, which highlights the difficulties and challenges with quantifying carbon emissions and discusses how to move productively through these challenges by drawing insights from studies of deep uncertainty. Our research study focuses on the digital sector and was governed by the following research question: how do practitioners researching, working, or immersed in the broad area of sustainable digitisation (researchers, industry, NGOs, and policy representatives) understand and engage with quantifying carbon? Our findings show how stakeholders struggled to measure carbon emissions across complex systems, the lack of standardisation to assist with this, and how these challenges led stakeholders to call for more data to address this uncertainty. We argue that these calls for more data obscure the fact that there will always be uncertainty, and that we must learn to govern from within it.
The challenges and potential solutions of achieving meaningful consent amongst research participants in northern Thailand: a qualitative study.
BACKGROUND: Achieving meaningful consent can be challenging, particularly in contexts of diminished literacy, yet is a vital part of participant protection in global health research. METHOD: We explored the challenges and potential solutions of achieving meaningful consent through a qualitative study in a predominantly hill tribe ethnic minority population in northern Thailand, a culturally distinctive population with low literacy. Semi-structured interviews were conducted with 37 respondents who had participated in scrub typhus clinical research, their family members, researchers and other key informants. A thematic analysis was conducted. RESULTS: Our analysis identified four interrelated themes surrounding participants' ability to give consent: varying degrees of research understanding, limitations of using informal translators, issues impacting decisions to join research, and voluntariness of consent. Suggestions for achieving more meaningful consent included the use of formal translators and community engagement with research populations. CONCLUSIONS: Participant's agency in decision making to join research should be supported, but research information needs to be communicated to potential participants in a way that they can understand. We found that improved understanding about the study and its potential benefits and harms goes beyond literacy or translation and requires attention to social and cultural factors.
Vulnerability and agency in research participants' daily lives and the research encounter: A qualitative case study of participants taking part in scrub typhus research in northern Thailand.
BACKGROUND: Researchers have a responsibility to protect all participants, especially vulnerable participants, from harm. Vulnerability is increasingly understood to be context specific, yet limited guidance is available regarding the vulnerability and agency of research participants in different cultural settings. This study aims to explore research participants' daily vulnerability and agency, and how these interact with participants' research experiences in their own words. Researchers' views and responses were also explored. METHODS: A qualitative study was conducted around two scrub typhus research studies in northern Thailand. A thematic analysis was carried out on 42 semi-structured interviews with research participants, their families, researchers and key informants. RESULTS: The majority of the research participants belonged to a hill tribe ethnic minority group. Common challenges were related to Thai language barriers, travel difficulties, uncertain legal status, unstable employment, lack of education and healthcare. We did not identify new vulnerabilities but we found that the extent of these vulnerabilities might be underestimated or even hidden from researchers in some cases. Despite these challenges people demonstrated agency in their daily lives and were often motivated and supported in this by family members. The majority of perceived research benefits were related to healthcare and gaining knowledge, while attending follow-up visits could be a burden for some. CONCLUSIONS: Our approach to research in culturally and socioeconomically diverse settings should be more responsive to participants' specific vulnerabilities and abilities evidenced in their daily life, rather than attributing vulnerability on the basis of membership of pre-defined 'vulnerable groups'. Researchers need to be aware and responsive towards the challenges participants face locally in order to minimise the burdens of research participation whilst allowing participants to benefit from research.
Culturally responsive research ethics: How the socio-ethical norms of Arr-nar/Kreng-jai inform research participation at the Thai-Myanmar border.
Despite advances, international research ethics guidelines still tend to consist of high-level ethical principles reflecting residual influence from North American and European traditions of ethics. Local ethics committees and community advisory boards can offer more culturally-sensitive approaches to training but most institutions lack substantive practical ethics guidance to engage rich moral understandings in day-to-day research practice in diverse cultural contexts. To address this gap, we conducted an international series of qualitative research ethics case studies, linked prospectively to active research programs in diverse settings. Here, we share findings from two case studies with a research team working on malaria and hepatitis B prevention with pregnant women in clinics serving migrants along the Thai-Myanmar border. In this sociocultural ethical analysis, we consider how core ethical requirements of voluntary participation, provision of fair benefits, and understandings of research risks and burdens are shaped, enriched, and in some instances challenged, by deep-seated and widespread Burmese, Karen and Thai cultural norms known as Arr-nar (in Burmese and Karen) or Kreng-jai (in Thai), encompassing multiple meanings including consideration for others and graciousness. We offer a model illustrating how one might map ethically significant sociocultural influences across the research practice pathway and close with lessons for developing a more culturally responsive research ethics practice in other international settings.
Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai-Myanmar border.
BACKGROUND: Research ethics guidelines set a high bar for conducting research with vulnerable populations, often resulting in their exclusion from beneficial research. Our study aims to better characterise participants' vulnerabilities, agency, resourcefulness and sources of support. METHODS: We undertook qualitative research around two clinical studies involving migrant women living along the Thai-Myanmar border. We conducted 32 in-depth interviews and 10 focus group discussions with research participants, families, researchers and key informants. RESULTS: We found that being 'undocumented' is at the core of many structural vulnerabilities, reflecting political, economic, social and health needs. Although migrant women lead challenging lives, they have a support network that includes family, employers, community leaders, non-governmental organisations and research networks. Migrant women choose to participate in research to access quality healthcare, gain knowledge and obtain extra money. However, research has the potential to exacerbate existing vulnerabilities, such as the burdens of cross-border travel, foregoing work and being more visible as migrants. CONCLUSIONS: Our study confirms that research is important to provide evidence-based care and was viewed by participants as offering many benefits, but it also has hidden burdens. Migrant women exercised agency and resourcefulness when navigating challenges in their lives and research participation.
AI and the need for justification (to the patient)
This paper argues that one problem that besets black-box AI is that it lacks algorithmic justifiability. We argue that the norm of shared decision making in medical care presupposes that treatment decisions ought to be justifiable to the patient. Medical decisions are justifiable to the patient only if they are compatible with the patient's values and preferences and the patient is able to see that this is so. Patient-directed justifiability is threatened by black-box AIs because the lack of rationale provided for the decision makes it difficult for patients to ascertain whether there is adequate fit between the decision and the patient's values. This paper argues that achieving algorithmic transparency does not help patients bridge the gap between their medical decisions and values. We introduce a hypothetical model we call Justifiable AI to illustrate this argument. Justifiable AI aims at modelling normative and evaluative considerations in an explicit way so as to provide a stepping stone for patient and physician to jointly decide on a course of treatment. If our argument succeeds, we should prefer these justifiable models over alternatives if the former are available and aim to develop said models if not.
Health providers' reasons for participating in abortion care: A scoping review
Background: There is a global shortage of health providers in abortion care. Public discourse presents abortion providers as dangerous and greedy and links 'conscience' with refusal to participate. This may discourage provision. A scoping review of empirical evidence is needed to inform public perceptions of the reasons that health providers participate in abortion. Objective: The study aimed to identify what is known about health providers' reasons for participating in abortion provision. Eligibility criteria: Studies were eligible if they included health providers' reasons for participating in legal abortion provision. Only empirical studies were eligible for inclusion. Sources of evidence: We searched the following databases from January 2000 until January 2022: Medical Literature Analysis and Retrieval System Online, Excerpta Medica Database, Cumulative Index to Nursing and Allied Health Literature, ScienceDirect and Centre for Agricultural and Biosciences International Abstracts. Grey literature was also searched. Methods: Dual screening was conducted of both title/abstract and full-text articles. Health providers' reasons for provision were extracted and grouped into preliminary categories based on the existing research. These categories were revised by all authors until they sufficiently reflected the extracted data. Results: From 3251 records retrieved, 68 studies were included. In descending order, reasons for participating in abortion were as follows: supporting women's choices and advocating for women's rights (76%); being professionally committed to participating in abortion (50%); aligning with personal, religious or moral values (39%); finding provision satisfying and important (33%); being influenced by workplace exposure or support (19%); responding to the community needs for abortion services (14%) and participating for practical and lifestyle reasons (8%). Conclusion: Abortion providers participated in abortion for a range of reasons. Reasons were mainly focused on supporting women's choices and rights; providing professional health care; and providing services that aligned with the provider's own personal, religious or moral values. The findings provided no evidence to support negative portrayals of abortion providers present in public discourse. Like conscientious objectors, abortion providers can also be motivated by conscience.
World Athletics regulations unfairly affect female athletes with differences in sex development
World Athletics have introduced regulations preventing female athletes with certain differences in sex development from competing in the female category. We argue these regulations are not justified and should be removed. Firstly, we examine the reasoning and evidence underlying the position that these athletes have a substantial mean difference in performance from other female athletes such that it constitutes an advantage, and argue it is not sufficient. Secondly, if an advantage does exist, it needs to be demonstrated it is unfair. We argue the advantage would not be unfair because to say otherwise relies on a presupposition about whether these athletes are female, which involves contradictory and inconsistent definitions of sex. Thirdly, we contend that even if it is established that there is an advantage and it is unfair, the response of requiring athletes to take testosterone-suppressing medication is not appropriate and is unfair.