scholarly journals Immuno-Hormonal, Genetic and Metabolic Profiling of Newborns as a Basis for the Life-Long OneHealth Medical Record: A Scoping Review

Medicina ◽  
2021 ◽  
Vol 57 (4) ◽  
pp. 382
Author(s):  
Alekandra Fucic ◽  
Alberto Mantovani ◽  
Gavin W. ten Tusscher
Keyword(s):  
General Practitioner ◽  
Medical Record ◽  
Environmental Exposure ◽  
Ethical Issues ◽  
Personalised Medicine ◽  
Developed Countries ◽  
Added Value ◽  
Medical Surveillance ◽  
Increased Risk ◽  
Transplacental Exposure

Holistic and life-long medical surveillance is the core of personalised medicine and supports an optimal implementation of both preventive and curative healthcare. Personal medical records are only partially unified by hospital or general practitioner informatics systems, but only for citizens with long-term permanent residence. Otherwise, insight into the medical history of patients greatly depends on their medical archive and memory. Additionally, occupational exposure records are not combined with clinical or general practitioner records. Environmental exposure starts preconceptionally and continues during pregnancy by transplacental exposure. Antenatal exposure is partially dependent on parental lifestyle, residence and occupation. Newborn screening (NBS) is currently being performed in developed countries and includes testing for rare genetic, hormone-related, and metabolic conditions. Transplacental exposure to substances such as endocrine disruptors, air pollutants and drugs may have life-long health consequences. However, despite the recognised impact of transplacental exposure on the increased risk of metabolic syndrome, neurobehavioral disorders as well as immunodisturbances including allergy and infertility, not a single test within NBS is geared toward detecting biomarkers of exposure (xenobiotics or their metabolites, nutrients) or effect such as oestradiol, testosterone and cytokines, known for being associated with various health risks and disturbed by transplacental xenobiotic exposures. The outcomes of ongoing exposome projects might be exploited to this purpose. Developing and using a OneHealth Medical Record (OneHealthMR) may allow the incorporated chip to harvest information from different sources, with high integration added value for health prevention and care: environmental exposures, occupational health records as well as diagnostics of chronic diseases, allergies and medication usages, from birth and throughout life. Such a concept may present legal and ethical issues pertaining to personal data protection, requiring no significant investments and exploits available technologies and algorithms, putting emphasis on the prevention and integration of environmental exposure and health data.

Ethical Issues Relevant to the Assessment of Suicide Risk in Nonclinical Research Settings

Crisis ◽  
2012 ◽  
Vol 33 (1) ◽  
pp. 54-59 ◽  
Author(s):  
Carolyn M. Wilson ◽  
Bruce K. Christensen
Keyword(s):  
Undergraduate Students ◽  
Suicide Risk ◽  
Ethical Issues ◽  
Current Paper ◽  
Self Report ◽  
Ethical Guidelines ◽  
Schizotypal Personality ◽  
Increased Risk ◽  
Genetic Features ◽  
Conducting Research

Background: Our laboratory recently confronted this issue while conducting research with undergraduate students at the University of Waterloo (UW). Although our main objective was to examine cognitive and genetic features of individuals with schizotypal personality disorder (SPD), the study protocol also entailed the completion of various self-report measures to identify participants deemed at increased risk for suicide. Aims and Methods: This paper seeks to review and discuss the relevant ethical guidelines and legislation that bear upon a psychologist’s obligation to further assess and intervene when research participants reveal that they are at increased risk for suicide. Results and Conclusions: In the current paper we argue that psychologists are ethically impelled to assess and appropriately intervene in cases of suicide risk, even when such risk is revealed within a research context. We also discuss how any such obligation may potentially be modulated by the research participant’s expectations of the role of a psychologist, within such a context. Although the focus of the current paper is on the ethical obligations of psychologists, specifically those practicing within Canada, the relevance of this paper extends to all regulated health professionals conducting research in nonclinical settings.

Vitamin A: dietologist’s position

2020 ◽  
pp. 49-57
Author(s):  
S. V. Orlova ◽  
E. A. Nikitina ◽  
L. I. Karushina ◽  
Yu. A. Pigaryova ◽  
O. E. Pronina
Keyword(s):  
Immune Response ◽  
Urinary Tract ◽  
Gastrointestinal Tract ◽  
Vitamin A ◽  
Developed Countries ◽  
Therapeutic Practice ◽  
The Past ◽  
Increased Risk ◽  
Mucous Membranes

Vitamin A (retinol) is one of the key elements for regulating the immune response and controls the division and differentiation of epithelial cells of the mucous membranes of the bronchopulmonary system, gastrointestinal tract, urinary tract, eyes, etc. Its significance in the context of the COVID‑19 pandemic is difficult to overestimate. However, a number of studies conducted in the past have associated the additional intake of vitamin A with an increased risk of developing cancer, as a result of which vitamin A was practically excluded from therapeutic practice in developed countries. Our review highlights the role of vitamin A in maintaining human health and the latest data on its effect on the development mechanisms of somatic pathology.

scholarly journals Ethical Issues in Consent for the Reuse of Data in Health Data Platforms

2021 ◽  
Vol 27 (1) ◽  
Author(s):  
Alex McKeown ◽  
Miranda Mourby ◽  
Paul Harrison ◽  
Sophie Walker ◽  
Mark Sheehan ◽  
...  
Keyword(s):  
Social Contract ◽  
Ethical Issues ◽  
Personalised Medicine ◽  
Data Reuse ◽  
Remote Access ◽  
Risk Indicators ◽  
New Paradigm ◽  
The Social ◽  
New Thinking ◽  
The Relationship

AbstractData platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.

scholarly journals Ethical challenges of the healthcare transition to adult antiretroviral therapy (ART) clinics for adolescents and young people with HIV in Uganda

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Scovia Nalugo Mbalinda ◽  
Sabrina Bakeera-Kitaka ◽  
Derrick Lusota Amooti ◽  
Eleanor Namusoke Magongo ◽  
Philippa Musoke ◽  
...  
Keyword(s):  
Young People ◽  
Patient Autonomy ◽  
Ethical Issues ◽  
Transition Process ◽  
Hiv Care ◽  
Ethical Challenges ◽  
Successful Transition ◽  
Healthcare Transition ◽  
Increased Risk ◽  
Retention In Hiv Care

Abstract Background Whereas many adolescents and young people with HIV require the transfer of care from paediatric/adolescent clinics to adult ART clinics, this transition is beset with a multitude of factors that have the potential to hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a smooth and successful transition. The purpose of this study was to analyze the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics. Methods Data presented were derived from 191 adolescents attending nine different health facilities in Uganda, who constituted 18 focus group discussions. In the discussions, facilitators and barriers regarding adolescents transitioning to adult HIV clinics were explored. Guided by the Silences Framework for data interpretation, thematic data analysis was used to analyze the data. The principles of bioethics and the four-boxes ethics framework for clinical care (patient autonomy, medical indications, the context of care, and quality of life) were used to analyze the ethical issues surrounding the transition from adolescent to adult HIV care. Results The key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort, and contextual factors are critical to a successful transition. Conclusion The priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition such as loss of autonomy, stigma, loss of privacy, and discontinuity of care to ensure retention in HIV care, facilitate long-term self-care, offer ongoing all-inclusive healthcare, promote adolescent health and wellbeing and foster trust in the healthcare system. Identifying and addressing the ethical issues related to what hinders or facilitates successful transitions with targeted interventions for the transition process may ensure adolescents and young people with HIV infection remain healthy across the healthcare transition.

scholarly journals First French study relative to preconception genetic testing: 1500 general population participants’ opinion

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Valérie Bonneau ◽  
Mathilde Nizon ◽  
Xenia Latypova ◽  
Aurélie Gaultier ◽  
Eugénie Hoarau ◽  
...  
Keyword(s):  
Genetic Testing ◽  
General Population ◽  
Social Security ◽  
Genetic Disease ◽  
Ethical Issues ◽  
Family Doctor ◽  
Screening Strategy ◽  
Medical Prescription ◽  
Medical Progress ◽  
Increased Risk

Abstract Background Until very recently, preconception genetic testing was only conducted in particular communities, ethnic groups or families for which an increased risk of genetic disease was identified. To detect in general population a risk for a couple to have a child affected by a rare, recessive or X-linked, genetic disease, carrier screening is proposed in several countries. We aimed to determine the current public opinion relative to this approach in France, using either a printed or web-based questionnaire. Results Among the 1568 participants, 91% are favorable to preconception genetic tests and 57% declare to be willing to have the screening if the latter is available. A medical prescription by a family doctor or a gynecologist would be the best way to propose the test for 73%, with a reimbursement from the social security insurance. However, 19% declare not to be willing to use the test because of their ethic or moral convictions, and the fear that the outcome would question the pregnancy. Otherwise, most participants consider that the test is a medical progress despite the risk of an increased medicalization of the pregnancy. Conclusion This first study in France highlights a global favorable opinion for the preconception genetic carrier testing under a medical prescription and a reimbursement by social security insurance. Our results emphasize as well the complex concerns underpinned by the use of this screening strategy. Therefore, the ethical issues related to these tests include the risk of eugenic drift mentioned by more than half of the participants.

scholarly journals Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues

2021 ◽  
Vol 13 (2) ◽  
pp. 179-194
Author(s):  
Serene Ong ◽  
Jeffrey Ling ◽  
Angela Ballantyne ◽  
Tamra Lysaght ◽  
Vicki Xafis
Keyword(s):  
Precision Medicine ◽  
Ethical Issues ◽  
Personalised Medicine ◽  
Large Population ◽  
Data Sets ◽  
Visual Aids ◽  
Policy Makers ◽  
The Social ◽  
Genomic Analyses ◽  
Common Understanding

AbstractGovernments are investing in precision medicine (PM) with the aim of improving healthcare through the use of genomic analyses and data analytics to develop tailored treatment approaches for individual patients. The success of PM is contingent upon clear public communications that engender trust and secure the social licence to collect and share large population-wide data sets because specific consent for each data re-use is impractical. Variation in the terminology used by different programmes used to describe PM may hinder clear communication and threaten trust. Language is used to create common understanding and expectations regarding precision medicine between researchers, clinicians and the volunteers. There is a need to better understand public interpretations of PM-related terminology. This paper reports on a qualitative study involving 24 focus group participants in the multi-lingual context of Singapore. The study explored how Singaporeans interpret and understand the terms ‘precision medicine’ and ‘personalised medicine’, and which term they felt more aptly communicates the concept and goals of PM. Results suggest that participants were unable to readily link the terms with this area of medicine and initially displayed preferences for the more familiar term of ‘personalised’. The use of visual aids to convey key concepts resonated with participants, some of whom then indicated preferences for the term ‘precision’ as being a more accurate description of PM research. These aids helped to facilitate dialogue around the ethical and social value, as well as the risks, of PM. Implications for programme developers and policy makers are discussed.

scholarly journals Sperm DNA methylation mediates the association of male age on reproductive outcomes among couples undergoing infertility treatment

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Oladele A. Oluwayiose ◽  
Haotian Wu ◽  
Hachem Saddiki ◽  
Brian W. Whitcomb ◽  
Laura B. Balzer ◽  
...  
Keyword(s):  
Dna Methylation ◽  
Developed Countries ◽  
Infertility Treatment ◽  
Reproductive Outcomes ◽  
Neurodevelopmental Outcomes ◽  
Male Age ◽  
Age Related ◽  
Sperm Dna ◽  
Increased Risk ◽  
Sperm Dna Methylation

AbstractParental age at time of offspring conception is increasing in developed countries. Advanced male age is associated with decreased reproductive success and increased risk of adverse neurodevelopmental outcomes in offspring. Mechanisms for these male age effects remain unclear, but changes in sperm DNA methylation over time is one potential explanation. We assessed genome-wide methylation of sperm DNA from 47 semen samples collected from male participants of couples seeking infertility treatment. We report that higher male age was associated with lower likelihood of fertilization and live birth, and poor embryo development (p < 0.05). Furthermore, our multivariable linear models showed male age was associated with alterations in sperm methylation at 1698 CpGs and 1146 regions (q < 0.05), which were associated with > 750 genes enriched in embryonic development, behavior and neurodevelopment among others. High dimensional mediation analyses identified four genes (DEFB126, TPI1P3, PLCH2 and DLGAP2) with age-related sperm differential methylation that accounted for 64% (95% CI 0.42–0.86%; p < 0.05) of the effect of male age on lower fertilization rate. Our findings from this modest IVF population provide evidence for sperm methylation as a mechanism of age-induced poor reproductive outcomes and identifies possible candidate genes for mediating these effects.

Pharmaceutical industry sponsorship of academic conferences: ethics of conflict of interest

2020 ◽  
pp. medethics-2020-106224
Author(s):  
Saroj Jayasinghe
Keyword(s):  
Developing Countries ◽  
Pharmaceutical Industry ◽  
Ethical Issues ◽  
Social Trust ◽  
Medical Profession ◽  
Codes Of Conduct ◽  
Developed Countries ◽  
Professional Judgment ◽  
Conflicts Of Interests ◽  
Core Issue

Sponsorship of medical conferences by the pharmaceutical industry has led to many ethical issues, especially in resource-poor developing countries. The core issue in these instances is to reduce or avoid conflicts of interests (COIs). COI is a set of circumstances that creates a risk that professional judgment or actions regarding a primary interest will be unduly influenced by secondary interests. Disruption of social trust should also be considered. This deontological approach should be complemented by a consequentialist approach. Towards this, the concept of distal interests (DI) is introduced. DI lies beyond the immediately visible COIs and the consequences of immediate decisions. They are ‘distal’ in time or place: ‘DI in time’ means consequence of the decision in future scenarios, while ‘DI in space’ means those that impinge on other institutions or bodies. In judging the consequences, it is also necessary to consider the reality of the existing relationship between the pharmaceutical industry and organisers of conferences. In more developed countries, these relationships are governed by stricter regulations, adherence to codes of conduct by both parties and stronger institutional oversights. In contrast, developing countries such as Sri Lanka the regulatory environment is lax and the demarcation of interests between the pharmaceutical industry and the medical profession is considerably blurred. Therefore, establishing clear rules of engagement between the stakeholders should be considered as an attempt to clear the muddy waters. The paper proposes a set of guidelines to capture these approaches.

scholarly journals Social networks, health and identity: exploring culturally embedded masculinity with the Pakistani community, West Midlands, UK

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Farina Kokab ◽  
Sheila Greenfield ◽  
Antje Lindenmeyer ◽  
Manbinder Sidhu ◽  
Lynda Tait ◽  
...  
Keyword(s):  
Social Networks ◽  
Qualitative Interviews ◽  
Developed Countries ◽  
Cultural Norms ◽  
Social Hierarchies ◽  
Lifestyle Choices ◽  
Increased Risk ◽  
West Midlands ◽  
Community Spaces ◽  
Social Causes

Abstract Background Migrants from South Asia living in developed countries have an increased risk for developing cardiovascular disease (CVD), with limited research into underlying social causes. Methods We used social capital as an interpretive lens to undertake analysis of exploratory qualitative interviews with three generations of at-risk migrant Pakistani men from the West Midlands, UK. Perceptions of social networks, trust, and cultural norms associated with access to healthcare (support and information) were the primary area of exploration. Results Findings highlighted the role of social networks within religious or community spaces embedded as part of ethnic enclaves. Local Mosques and gyms remained key social spaces, where culturally specific gender differences played out within the context of a diaspora community, defined ways in which individuals navigated their social spheres and influenced members of their family and community on health and social behaviours. Conclusions There are generational and age-based differences in how members use locations to access and develop social support for particular lifestyle choices. The pursuit of a healthier lifestyle varies across the diverse migrant community, determined by social hierarchies and socio-cultural factors. Living close to similar others can limit exposure to novel lifestyle choices and efforts need to be made to promote wider integration between communities and variety of locations catering to health and lifestyle.

Mapping the Ethical Issues of Digital Twins for Personalised Healthcare Service (Preprint)

2021 ◽  
Author(s):  
Pei-hua Huang ◽  
Ki-hun Kim ◽  
Maartje Schermer
Keyword(s):  
Ethical Issues ◽  
Digital Health ◽  
Personalised Medicine ◽  
Healthcare Services ◽  
Ethical Values ◽  
Ethical Concerns ◽  
Digital Twins ◽  
Research Gap ◽  
Process Oriented ◽  
Personalised Healthcare

BACKGROUND The concept of digital twins has great potential for transforming the existing healthcare system by making it more personalised. As a convergence of healthcare, artificial intelligence, and information and communication technologies, personalised healthcare services developed under the concept of digital twins raise a myriad of ethical issues. While some of the ethical issues are known to researchers working on digital health and personalised medicine, currently there is no comprehensive review that maps major ethical risks of digital twins for personalised healthcare services. OBJECTIVE This paper fills the research gap by identifying major ethical risks of digital twins for personalised healthcare services. We first propose a working definition for digital twins for personalised healthcare services (DTPHS) to facilitate future discussion on the ethical issues related to these emerging digital health services. We then developed a process-oriented ethical map to identify major ethical risks against each of the different data processing phases. METHODS This research aims to address this research gap by providing a comprehensive analysis of major ethical risks of DTPHSs. Due to the scarcity of literature on DTPHSs, we are unable to perform a systematic review of ethical concerns over DTPHSs. Thus, we resort to literature on eHealth, personalised medicine, precision medicine, and information engineering to identify potential issues. We develop a process-oriented ethical map to structure the inquiry in a more systematic way. The ethical map allows us to see how each of the major ethical concerns emerges during the process of transforming raw data into valuable information. RESULTS The process-oriented ethical analysis identified ten operational problems and the relevant ethical values. By structuring the operational problems and relevant ethical values in a clear logical flow, this process-oriented ethical map allows developers of DTPHSs and stakeholders to have a comprehensive overview of major ethical risks while refining the design of DTPHSs. The ethical values section on the map also helps developers of DTPHSs better understand which values they ought to consider while developing solutions for an operational problem they encounter.   CONCLUSIONS It is challenging to address all of the major ethical risks a DTPHS might encounter proactively without a conceptual map at hand. The process-oriented ethical map we propose here can assist developers of DTPHSs in analysing ethical risks in a more systematic manner. CLINICALTRIAL N/A

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