Research on individuals at clinical high risk for psychological and physical disorders has grown exponentially in recent years, with a variety of new screening tools and early intervention techniques being implemented. One recent example is Attenuated Psychosis Syndrome, a diagnosis for individuals who are at clinical high risk for psychosis, which was recently included in Section III of the Diagnostic and Statistical Manual of Mental Disorders. Given the focus on prevention at early stages, at-risk individuals (...) will continue to be a topic of significance not only in psychosis research but also in other illnesses. This document provides a comprehensive summary of the ethical dilemmas that clinicians or researchers may encounter in this domain, and possible actions consistent with the current Canadian Code of Ethics for Psychologists. We use clinical high risk for psychosis and the Canadian Code of Ethics for Psychologists as a way to illuminate these ethical issues; however, application to other jurisdictions and disciplines, as well as other high-risk populations, is also of relevance. (shrink)

Growing opioid misuse in the United States has resulted in more children living with an adult with an opioid use history. Although an abundance of research has demonstrated a link between opioid misuse and negative parenting behaviors, few intervention efforts have been made to target this underserved population. The Family Check-Up has been tested in more than 25 years of research, across multiple settings, and is an evidence-based program for reducing risk behavior, enhancing parenting skills, and preventing the onset (...) of substance use. It is designed to motivate parents to engage in positive parenting practices and to change problematic parenting and has been tested across a variety of ages including early childhood and adolescence. It is highlighted in NIDA’s Principles of Substance Use Prevention for Early Childhood: A research-based guide as one of only three effective selective prevention programs for substance abuse among families with young children. Recently, we developed an online version of the FCU that has now been adapted for early childhood and families with opioid use histories. The online platform and telehealth model allow for wide-scale dissemination, ease of training with community providers, and increased public health reach for families in remote, rural areas. This is particularly important when targeting families with opioid misuse and addiction because there are high rates of addiction in remote areas, yet few services available. In this article, we describe the FCU Online and review new content in the model that targets a population of young adult parents with substance abuse histories, including opioid use. New modules include content focused on harm reduction for this high-risk population of parents, such as safety in the home, substance use while parenting, and managing conflict with partners and friends. (shrink)

Individuals with high risk of internet gaming disorder showed abnormal psychological performances in response inhibition, impulse control, and emotion regulation, and are considered the high-risk stage of internet gaming disorder. The identification of this population mainly relies on clinical scales, which are less accurate. This study aimed to explore whether these performances have highly accurate for discriminating HIGD from low-risk ones. Eye tracking based anti-saccade task, Barratt impulsiveness scale, and Wong and Law emotional intelligence scale (...) were used to evaluate psychological performances in 57 individuals with HIGD and 52 matched low risk of internet gaming disorder. HIGD group showed significantly increased BIS total, attention, motor, and non-planning scores, but significantly decreased WLEIS emotion regulation score and correct rate of eye tracking anti-saccade task compared with LIGD group. BIS total score was negatively correlated with the WLEIS total and WLEIS emotion regulation scores. A combination of the WLEIS emotion regulation score and the correct rate of anti-saccade task could discriminate HIGD from LIGD with 91.23% sensitivity, 82.69% specificity, and 87.16% accuracy. Participants with higher gaming hours daily were 40 times more likely to be high risk than their counterparts. Hence, psychological performances were worse in HIGD. A combination of abnormal emotion regulation and response inhibition might be a potential marker to identify HIGD individuals. (shrink)

Many preventive intervention studies with adolescents address high-risk behaviors such as drug and alcohol use, and unprotected sex. Randomized controlled trials (RCT) are the gold standard methodology used to test the effectiveness of these behavioral interventions. Interventions outside the rigidly described protocol are prohibited. However, there are ethical challenges to implementing inflexible intervention protocols, especially when the target population is young, experiences many stressful events, and lives in a resource-poor environment. Teens who are at high risk (...) for substance use or sexual risk behaviors tend to be at risk for other problems such as exposure to violence, sexual and physical abuse, depression, and homelessness. How should investigators deal with the psychological and social needs of teenagers in prevention programs in an ethically appropriate way and at the same time preserve the validity of RCT results? We have identified program characteristics, participant characteristics, interaction with parents, and problems with adolescents not in the study as sources of ethical dilemmas in RCT with at-risk adolescents. As a result of our experience, we recommend that every behavioral intervention study develop an ethics protocol, which should include rules for providing help to participants, has contact information for experts to provide guidance, and an emergency procedure for dealing with life threatening situations. In addition, studies should have a resource manual, train research staff in these ethical issues, and work with a data safety and monitoring board or ethics committee. (shrink)

Clinical trials aim to minimise participant risk and generate new clinical knowledge for the wider population. Many military agencies are now investing efforts in pushing towards developing new treatments involving Brain-Computer Interfaces, Gene Therapy and Stem Cells interventions. These trials are targeting smaller disease groups, as such they give rise to novel participant risks of harms that are largely not accommodated by existing practice. This is of most concern with irreversible harms at early trial stages, where participants may forfeit (...) any future therapy, and in personalised medicine, where the individual participant assumes all of the trial risk. Given these new experimental interventions involve high risk of irreversible harms, how much risk should patients be exposed to when participating in experimental testing of innovative technologies? Designing clinical trials which better balance risk/benefit ratios for participants is crucial. The aim of this book chapter is to suggest a new stratified risk framework aimed at minimising the risk-benefit ratio to participants in clinical trials associated with high risk of irrevocable harms. We will argue it demands a higher-level of clinical data capture at earlier trial stages than predicated by current trial doctrine; it also requires publication of all trial data to minimise risk to participants of any future trial. (shrink)

This study investigated the importance of socioeconomic factors such as education, income, religion, family structure and residence in explaining the increased risk of mortality among vulnerable populations aged less than 20 years in Rio de Janeiro, Brazil. Data used were from the 1991 Brazilian Demographic Census and comprised 121,060 women aged 15–49 residing in Rio de Janeiro. Two alternative statistical methods were used to calculate the risk of death: the widely used Brass method (an indirect estimate which (...) assesses population risks) and a case-control study (which assesses individual risks). The study also focused on the importance of indicators of human and social capital, the lack of which may explain the higher risk of death among children and adolescents. Lack of education was found to be a major determinant of mortality at young ages. Residence in a favela (shantytown), families in which mothers were the head of the family, and a lower median level of income were found to be significant determinants of mortality among vulnerable populations in Brazil. However, religion was not found to be as important a predictor of high mortality. (shrink)

Student cheating has always been a problem in higher education, but detection of cheating has become easier with technology. As a result, more students are being caught and reported for cheating. While reporting cheating is not a negative, the rippling effects of reported cheating may be felt by some populations more than others. Thus, preventing cheating would be a preferable option for all involved.Identifying those at risk for being reported for cheating is a first step in developing preventive (...) measures. Previous research has attempted to do this through the use of self-report surveys, but such research takes considerable time and resources to conduct and suffers from low response rates and social desirability bias. To address this limitation in existing research, this study links existing data from records of other-reported cheating to university registration data in order to examine 6 cheating risk factors identified in previous research: maturity level, gender, grade point average, major, international student status, and fear of punishment. The results of the study suggest that international and transfer students, particularly those who are male, in high-risk majors, and have lower grade point averages, are in particular need of preventative education. Likewise, those faculty who teach in computer science, engineering and economics majors should do more to educate implement practices to reduce the likelihood of cheating. (shrink)

Targeting high-risk populations for public health interventions is a classic tool of public health promotion programs. This practice becomes thornier when racial groups are identified as the at-risk populations. I present the particular ethical and epistemic challenges that arise when there are low-risk subpopulations within racial groups that have been identified as high-risk for a particular health concern. I focus on two examples. The black immigrant population does not have the same hypertension (...) risk as US-born African Americans. Similarly, Finnish descendants have a far lower rate of cystic fibrosis than other Caucasians. In both cases the exceptional nature of these subpopulations has been largely ignored by the designers of important public health efforts, including the recent US government dietary recommendations. I argue that amending the publicly-disseminated risk information to acknowledge these exceptions would be desirable for several reasons. First, recognizing low-risk subpopulations would allow more efficient use of limited resources. Communicating this valuable information to the subpopulations would also promote truth-telling. Finally, presenting a more nuanced empirically-supported representation of which groups are at known risk of diseases (not focusing on mere racial categories) would combat harmful biological race essentialist views held by the public. (shrink)

Background: Shortage of donor organs is one of the major problems for liver transplant programmes. Living liver donation is a possible alternative, which could increase the amount of donor organs available in the short term.Objective: To assess the attitude towards living organ donation in the general population to have an overview of the overall attitude within Germany.Methods: A representative quota of people was evaluated by a mail questionnaire . This questionnaire had 24 questions assessing the willingness to be a living (...) liver donor for different potential recipients. Factors for and against living liver donation were assessed.Results: Donating a part of the liver was almost as accepted as donating a kidney. The readiness to donate was highest when participants were asked to donate for children. In an urgent life-threatening situation the will to donate was especially high, whereas it was lower in the case of recipient substance misuse. More women than men expressed a higher disposition to donate for their children. Sex, religion, state of health and age of the donor, however, did not influence other questions on the readiness to consider living organ donation. The will for postmortem organ donation positively correlated with the will to be a living organ donor.Conclusions: The motivation in different demographic subgroups to participate in living liver transplantation is described. Differences in donation readiness resulting from the situation of every donor and recipient are thoroughly outlined. The acceptance for a living liver donation was found to be high – and comparable to that of living kidney donation. (shrink)

Zika infection in pregnant women is associated with an elevated probability of giving birth to a child with microcephaly and multiple other disabilities. Public health messaging on Zika prevention has predominantly targeted women who know they are pregnant or intend to become pregnant, but not teenage females for whom unintended pregnancy is more likely. Vulnerabilities among this population to reproductive risks associated with Zika are further amplified by restrictive abortion laws in several Zika-impacted states. Key to prevention is enhanced, targeted (...) public health messaging centered on teens nationally and particularly in certain high-risk regions. (shrink)

Many epidemics consist in individuals spreading infection to others. From the population perspective, they also have population characteristics important in modeling, explaining, and intervening in epidemics. I analyze epidemiology’s contemporary population perspective through the example of epidemics by examining two central principles attributed to Geoffrey Rose: a distinction between the causes of cases and the causes of incidence, and between “high-risk” and “population” strategies of prevention. Both principles require revision or clarification to capture the sense in which they (...) describe distinct perspectives on the same phenomenon, each perspective capturing a different level of contrastive analysis. (shrink)

This is an exploratory paper of the ethical implications for genomic research and mental illness with specific reference to Singapore. Singapore has a unique context due to its social and political systems, and although it is a relatively small country, its population is religiously and culturally diverse. The issues that we identify here, therefore, will offer new perspectives and will also shed light on the existing literature on psychiatric genomics in society. We contextualise issues such as risk and stigma (...) in the identification and diagnosis of psychosis in the way they relate to Singaporean society, and use a current study as a case example. Genomic research has the potential to change significantly he practice of clinical medicine if, as expected, fast and inexpensive sequencing becomes a reality. It will likely also change how society thinks and acts in respect to multi-factorial diseases, conditions, traits, and syndromes that have a genetic component. Genomic research already raises a number of ethical concerns relating to the privacy of individuals, including the disclosure of research results and incidental findings, surreptitious tests, third party access to data, and the re-emergence of genetic determinism. These issues are potentially exacerbated when genomics - the study of whole genomes to understand complex illness and behavioural traits - is applied to psychiatric research, because of the stigma that is often attached to mental illness. In this paper, we discuss some of the issues that have arisen in the context of a study in Singapore that is currently investigating the genomics and biomarkers of psychosis. We argue that although a genomic study rarely creates data that is directly useful to the participant, it can have incidental benefits to the individual who is identified during the study as being at high risk of developing psychosis and its related states. Understanding these potential benefits requires us to examine the implications that this type of research may have on public understandings of genomic data and risk. (shrink)

Bioethicists broadly agree that there is a limit to the level of net risk that biomedical research may permissibly impose on participants, even in cases where the potential of that research to improve the health of the population health would be great. Although some may permissibly volunteer to take on some degree of pro‐social risk, no one, not even a willing volunteer, may ever be outright sacrificed for others. One might think this perspective, if correct, makes it effectively (...) impossible to study interventions with high intrinsic risks. But I describe a method – risk dilution – by which an extremely high‐risk intervention can nonetheless be effectively studied in the context of an acceptably low‐risk trial. I then defend risk dilution from objections. (shrink)

The manner in which limited vaccines are distributed during a pandemic is an ethical issue. The utility principle has been used to argue priority be given to certain individuals based on factors such as the epidemiology of the spread of disease and maintaining the functioning of society. The equity principle has been used to encourage fair practices that account for the economic and social costs of all decisions made. We argue that both principles are met through priority vaccination of homeless (...) individuals, as this strategy protects a medically vulnerable population while reducing the chances of transmission to others as they move through populated urban spaces. We begin by reviewing debates around ethical vaccine distribution. We then argue the homeless are a medically high-risk population who may contribute to the spread of disease through their mobility. As immunization rates are generally lower among the homeless and many do not access mainstream health care, we argue that community vaccine clinics must be used to reach these individuals. We provide support by analyzing Toronto Public Health’s operation of vaccine clinics in shelters and drop-in centres during pH1N1 and conclude that this strategy is effective for immunizing homeless individuals, bringing together the equity and utility principles. (shrink)

In recent decades, researchers have attempted to prospectively identify individuals at high risk of developing psychosis in the hope of delaying or preventing psychosis onset. These psychosis risk individuals are identified as being in an ‘At-Risk Mental State’ (ARMS) through a standardised psychometric interview. However, disclosure of ARMS status has attracted criticism due to concerns about the risk–benefit ratio of disclosure to patients. Only approximately one quarter of ARMS patients develop psychosis after three years, raising (...) concerns about the unnecessary harm associated with such ‘false-positive’ results. These harms are especially pertinent when identifying psychosis risk individuals due to potential stigma and discrimination in a young clinical population. A dearth of high-quality evidence supporting interventions for ARMS patients raises further doubts about the benefit accompanying an ARMS disclosure. Despite ongoing discussion in the bioethical literature, these concerns over the ethical justification of disclosure to ARMS patients are not directly addressed in clinical guidelines. In this paper, we aim to provide a unified disclosure strategy grounded in principle-based analysis for ARMS clinicians. After considering the ethical values at stake in ARMS disclosure, and their normative significance, we argue that full disclosure of the ARMS label is favoured in the vast majority of clinical situations due to the strong normative significance of enhancing patients' understanding. We then compare our framework with other approaches to ARMS disclosure and outline its limitations. (shrink)

We obtain rich measures of the risk preferences of a sample of Vietnamese farmers, and revisit the link between risk preferences and economic well-being. Far from being particularly risk averse, our farmers are on average risk neutral and, thus, more risk tolerant than typical Western subject populations. This generalises recent findings indicating that students in poorer countries are more risk tolerant than students in richer countries to a general population sample. Risk aversion (...) is, furthermore, negatively correlated with income within our sample, but does not correlate with wealth. This also casts doubt on high levels of risk aversion causing failure to adopt new technologies, which we discuss. (shrink)

IN THE UNITED STATES, 25 PERCENT OF PEOPLE LIVING WITH HIV/AIDS HAVE spent time in the correctional system. HIV is known to spread among incarcerated individuals through high-risk behaviors including unprotected sex, injection drug use, tattooing, and body piercing. When released from prison, persons living with HIV can spread the disease in the wider community. This essay explores the complex problem of HIV infection among US prisoners from a common good approach rooted in Catholic social teachings by examining (...) available data on US prison populations, describing recent trends in the prosecution of drug-related crimes, and proposing concrete policy recommendations for HIV prevention interventions in US prisons. (shrink)

With the arrival of new methods of genome editing, especially CRISPR/cas 9, new perspectives on germline interventions have arisen. Supporters of germ line genome editing claim that the procedure could be used as a means of disease prevention. As a possible life-saving therapy, it provides benefits that outweigh its risks. Opponents of GGE claim that the medical and societal risks, especially the use of GGE for genetic enhancement, are too high. In our paper, we analyze the risks and benefits (...) of GGE. We show that the medical risk on an individual level might be reduced by further research in the near future so that they may be outweighed by the benefits. We also show that the societal risks of the procedure, i.e. genetic enhancement, are manageable by establishing a regulative framework before the GGE is implemented. Since the effects of modifying genes for the genepool of a given population are extremely difficult to model, the medical risks on the population level might be too high. (shrink)

Background: The development of the COVID-19 pandemic has prompted the implementation of many procedures to safeguard against further increases in illness. Unfortunately, this has drastically reduced residents’ contact with their families, which has increased feelings of loneliness and isolation. This is particularly difficult in long-term care facilities, where the risk of developing depression is higher than in the general population.Objectives: The aim of the study was to assess the risk of depression among the residents of long-term care institutions (...) in Poland during the COVID-19 pandemic and to determine the relationship between the risk of depression and the occurrence of cognitive impairment in the study group.Methods: The study included 273 residents from long-term care institutions in Poland. The risk of depression was determined based on an originally designed questionnaire. The cognitive state of the subjects was assessed using the screening test Mini-Mental State Examination. Both the depression risk assessment and the MMSE test were conducted twice: in March and December 2020.Results: In March, severe dementia was present in 28.2% of the residents and normal MMSE scores were observed in 16.1% of the subjects; in December, the prevalence of severe dementia increased to 31.1% and that of normal scores decreased to 10.3%. In March, no participant was found to be at high risk of depression and moderate risk was observed in 14.3% of the subjects; in December, 2.6% of the residents had a high risk score and 45.4% had a moderate risk score. Statistical analysis revealed that higher MMSE scores correspond with a higher risk of depression.Conclusion: A higher risk of depression was observed with the development of the pandemic. Residents with cognitive impairment were characterised by a lower risk of depression compared to individuals with normal MMSE scores. During the study, progression of cognitive impairment was observed in the residents. (shrink)

The global public health threat posed by infectious disease is well recognised. The obligation to treat whilst exposed to risk, and its limits, is debated with each novel serious and communicable pathogen. Within national jurisdictions, different responses are forthcoming. Some, like France in 2009, give government the power to require healthcare staff to work, and even to requisition staff, including retired professionals. Others rely on notions of solidarity and professional duty, with scope for individual discretion. Our research with staff (...) in the West Midlands in 2008/2009– including non-professionals – suggested a strong correlation between feeling a duty to work and willingness to work during a pandemic. This was more influential than removing other barriers to working. Medical military personnel can already be ordered into risky situations. Our research in 2015/16 with those who worked in the Ebola treatment unit in Sierra Leone suggested that their concerns about risk were complex: the perceived magnitude of the risk was only one factor, even though tolerance was high. The type of risk and circumstances requiring that risk to be taken were also influential.Against this background, it will be argued, with caveats, that:military medical personnel should be willing to accept greater risk than civilian medical staff;and that to maintain national health services during a communicable disease emergency:civilian medical staff ought to accept greater risks than they currently appear willing to tolerate;conscription – from civilian or military populations – is permissible, even though it may elevate personal risk. (shrink)

The Alzheimer field is in desperate need for an effective treatment. After decades of research, the available drugs treat only symptoms, and even their effectiveness is disputed. Because brain changes precede the clinical symptoms by years to decades, disease-modifying treatments should probably be started early, when the first symptoms occur—or even before. But how to determine who to treat? In this issue, Erik Gustavsson c.s. approach this question by addressing the benefits, harms and ethical issues encountered when using different modes (...) of screening for ‘preclinical’ or early symptomatic Alzheimer disease.1 Their overall conclusion is clear—screening for high risk of developing AD dementia to select those who are eligible for treatment is ethically problematic, unless extremely effective treatment becomes available. An additional major challenge is that diagnostic test accuracy is generally poor, with a particularly high risk of false-positive results, that is, biological evidence of Alzheimer pathology in persons who will never develop dementia. The risk of overmedicalisation is serious, and the potential harms of screening for AD should not be ignored, as Le Couteur c.s. previously argued.2 In short, there is no evidence base for any form of screening for AD whether in a preclinical stage (an …. (shrink)

To understand how small business entrepreneurs respond to government policy one has to know their risk and time preferences. Are they risk averse, or have high discount rates, such that they are hard to motivate? We have conducted a set of field experiments in Denmark that will allow a direct characterization of small business entrepreneurs in terms of these traits. We build on experimental tasks that are well established in the literature. The results do not suggest that (...) small business entrepreneurs are more or less risk averse than the general population under the assumption of Expected Utility Theory. However, we generally find an S-shaped probability weighting function for both small business entrepreneurs and non-entrepreneurs, with entrepreneurs being more optimistic about the chance of occurrence for the best outcome in lotteries with real monetary outcomes. The results also point to a significant difference in individual discount rates between entrepreneurs and non-entrepreneurs: entrepreneurs are willing to wait longer for certain rewards than the general population. (shrink)

Prospect theory predicts a four-fold risk attitude, which means that people are risk seeking for low-probability gain and high-probability loss and risk averse for low-probability loss and high-probability gain because they overweight probability when it is low. The four-fold pattern of risk attitude has been supported by several former studies with mainstream industrialized populations but has never previously been tested in a non-industrialized society. In this work, we examined the robustness of the four-fold (...) risk attitude in the DuLong minority ethnicity in China, which is a small society with only 4,000 members that is isolated from modern civilization. We used simple lotteries for gain and loss with different probabilities to elicit the risk attitude of 37 DuLong villagers. Our results support prospect theory predictions in that DuLong people are risk seeking for low-probability gain and risk averse for low-probability loss. However, although they showed a tendency to decrease their degree of risk seeking for gain, their risk attitude did not reverse when the probability of the prospect increased to 50%. In summary, our results suggest a right-shifted weighting function in this non-industrialized small society. The deviation might be caused by the particular living situation of the DuLong people, their sensitivity to monetary payoffs, and the elicitation procedure. (shrink)

Dementia accompanies aging in certain susceptible individuals. The chemical function of the brain remains normal, but certain neurotransmitter-selective diseases, such as Parkinson's disease, Huntington's disease, and Alzheimer's disease occur more commonly with age.There are at least two issues troubling researchers of senile dementia at the moment. One is the contribution of cell death, as opposed to selective neuronal atrophy, to the pathology of degenerative disorders. The other is how early the onset of dementia might be detected. The resolution of such (...) issues is important for the design of therapies for the common and most serious chronic, rather than acute, neurodegenerative disease.Alzheimer's disease is one of the most devastating neurological disorders. The ethical debate is often related to when human biological life ceases or when a person ceases to exist. If the elder is still a person, he/she is no more the same person. Huntington's disease is inherited as a highly penetrant, autosomal dominant neuronal disorder. A genetic test can accurately predict a person's risk and that of the children. As the knowledge of the genetic basis is increasing and prenatal diagnosis gets easier, the possibilities to avoid child disorders will become greater, but genetic testing raises problematic ethical issues. Ethical action involves the right to know and the right not to know, it involves freedom of choice and freedom implies knowledge. It is ethical that relatives in age of procreation should be informed. In any case, efficacy and safety of the procedure, the risk-benefit ratio for a particular disease must be judged to be acceptable and understood through informed consent by the patient or the family or both. (shrink)

If it survives for a little longer, the human race will probably start to spread across its galaxy. Germ warfare, though, or environmental collapse or many another factor might shortly drive humans to extinction. Are they likely to avoid it? Well, suppose they spread across the galaxy. Of all humans who would ever have been born, maybe only one in a hundred thousand would have lived as early as you. If, in contrast, humans soon became extinct then because of the (...) population explosion you would have been 'fairly ordinary'. Roughly ten per cent of all humans would have been your contemporaries. Now (as the cosmologist Brandon Carter saw to his dismay) a scientific principle tells us not to treat observations as highly extraordinary when they could easily be fairly ordinary. How to apply the principle is controversial, yet it seems we can safely conclude that humanity's chances of galactic colonization cannot be high. Still, we should work to make them as high as possible, resisting those philosophers who argue that human extinction would be no tragedy. (shrink)

The article by Gustavsson et al 1 addresses the important question how to handle new medications with focus on drug candidates that reduce Aβ or tau in the brain, for individuals with Alzheimer’s disease, where the need for a disease-modifying drug is enormous. There are several ethical issues to deal with. The challenges and ethical implications associated with whom should be eligible for treatment are thoroughly discussed in the article. Should treatment only be available to those with mild symptoms and/or (...) to those with no symptoms but with risk for AD? Where do we draw the line between who will be eligible for treatment and who will not? Who will be responsible for the prioritisation? There are many ethical problems with both population screening and screening of those with high risk well discussed in the article. Indeed, the first immunotherapy drug Aducanumab was approved by the US Food and Drug Administration in …. (shrink)

Dementia accompanies aging in certain susceptible individuals. The chemical function of the brain remains normal, but certain neurotransmitter-selective diseases, such as Parkinson's disease, Huntington's disease, and Alzheimer's disease occur more commonly with age.There are at least two issues troubling researchers of senile dementia at the moment. One is the contribution of cell death, as opposed to selective neuronal atrophy, to the pathology of degenerative disorders. The other is how early the onset of dementia might be detected. The resolution of such (...) issues is important for the design of therapies for the common and most serious chronic, rather than acute, neurodegenerative disease.Alzheimer's disease is one of the most devastating neurological disorders. The ethical debate is often related to when human biological life ceases or when a person ceases to exist. If the elder is still a person, he/she is no more the same person. Huntington's disease is inherited as a highly penetrant, autosomal dominant neuronal disorder. A genetic test can accurately predict a person's risk and that of the children. As the knowledge of the genetic basis is increasing and prenatal diagnosis gets easier, the possibilities to avoid child disorders will become greater, but genetic testing raises problematic ethical issues. Ethical action involves the right to know and the right not to know, it involves freedom of choice and freedom implies knowledge. It is ethical that relatives in age of procreation should be informed. In any case, efficacy and safety of the procedure, the risk-benefit ratio for a particular disease must be judged to be acceptable and understood through informed consent by the patient or the family or both. (shrink)

We identify three distinct ethical problems that can arise with risk displacement. Risk displacement is the shifting of extant risk from one or more individuals to other individual(s) such that the reduction of risk to the first group is causally implicated in increasing risk to the second group. These problems are: concentration of risk in inequitable ways; transfer of risk to already vulnerable or disadvantaged populations; and exercise of undue influence over potential (...) research participants. The first two arise in both public policy and research initiatives, whereas the third is a special concern that only applies to research initiatives. We argue that when one or more of these is of high magnitude, then the study or policy intervention may be ethically wrong. Finally, we conclude that although some risk displacement is ethically permissible, researchers and policymakers still have ethical reasons to reduce the magnitude of these problems. (shrink)

After WWII, global concerns about the uses of nuclear energy and radiation sources in agriculture, medicine, and industry brought about calls for radiation protection. At the beginning of the 1960s radiation protection involved the identification and measurement of all sources of radiation to which a population was exposed, and the evaluation and assessment of populations in terms of the biological hazard their exposure posed. Mexico was not an exception to this international trend. This paper goes back to the origins (...) of the first studies on the effects of radiation and on radioprotective compounds in the Genetics and Radiobiology Program of the National Commission of Nuclear Energy founded in 1960, at a time when the effects of radiation on living beings and radiation protection demanded the attention of highly localized groups of scientists and the creation of international as well as national institutions, and its connection to dosimetry and radiation protection until the 1990s. This historical reconstruction examines the circulation of knowledge, scientists, and their material and cognitive resources, to show that radiobiology, with dosimetry and radiation protection as cases in point, not only were carried out with high international standards in parallel with international agencies, but also reflected local material needs, including the standardization of new experimental techniques. (shrink)

Background HIV prevention trials conducted among disadvantaged vulnerable at-risk populations in developing countries present unique ethical dilemmas. A key concern in bioethics is the validity of informed consent for trial participation obtained from research subjects in such settings. The purpose of this study was to investigate the effectiveness of a continuous informed consent process adopted during the MDP301 phase III vaginal microbicide trial in Mwanza, Tanzania. Methods A total of 1146 women at increased risk of HIV acquisition (...) working as alcohol and food vendors or in bars, restaurants, hotels and guesthouses have been recruited into the MDP301 phase III efficacy and safety trial in Mwanza. During preparations for the trial, participatory community research methods were used to develop a locally-appropriate pictorial flipchart in order to convey key messages about the trial to potential participants. Pre-recorded audio tapes were also developed to facilitate understanding and compliance with gel-use instructions. A comprehension checklist is administered by clinical staff to all participants at screening, enrolment, 12, 24, 40 and 50 week follow-up visits during the trial. To investigate women's perceptions and experiences of the trial, including how well participants internalize and retain key messages provided through a continuous informed consent process, a random sub-sample of 102 women were invited to participate in in-depth interviews conducted immediately after their 4, 24 and 52 week follow-up visits. Results 99 women completed interviews at 4-weeks, 83 at 24-weeks, and 74 at 52 weeks. In all interviews there was evidence of good comprehension and retention of key trial messages including that the gel is not currently know to be effective against HIV; that this is the key reason for conducting the trial; and that women should stop using gel in the event of pregnancy. Conclusions Providing information to trial participants in a focussed, locally-appropriate manner, using methods developed in consultation with the community, and within a continuous informed-consent framework resulted in high levels of comprehension and message retention in this setting. This approach may represent a model for researchers conducting HIV prevention trials among other vulnerable populations in resource-poor settings. Trial registration Current Controlled Trials ISRCTN64716212. (shrink)

BackgroundPsychological distress/morbidity is amongst the primary reason for the cause of pain at multiple sites, its progression, and recovery. Though still not very clear if physical pain in the neck or the back may predict psychological morbidities or not. Thus, we investigated the association between combined neck or back pain and psychological distress/morbidity.MethodsA cross-sectional study was conducted in Al-Kharj, Saudi Arabia, including 1,003 individuals. The questionnaire comprised of General Health Questionnaire-12 and some questions about neck and back pain. Data analysis (...) was done using statistical software SPSS version 26.0.ResultsThe results of the multivariate analysis revealed a significant positive association between neck/back pain status and total GHQ score. Having neck/back pain had almost a 2.5 times greater risk of psychological distress/morbidity. Further, females were more likely to have a higher risk of psychological distress/morbidity than males while adjusting for sociodemographic and clinical characteristics.ConclusionThe combination of neck and back pain was significantly associated with the Saudi population’s psychological problems. Therefore, the Saudi government needs to devise high-risk strategies and allocate adequate resources to the cause so that at-risk people can be shielded from the adverse complications arising from this condition in the long run. (shrink)

This article provides an analysis of the issues and ethical challenges faced in a study with LGBTIQ student participants concerning their experiences of violence, harassment and bullying in tertiary settings. The authors detail the ethical challenges behind the development of the project, and around conducting research with a minority and vulnerable population. The article illustrates how the utilization of feminist and queer theory has impacted the process of conducting ethical research, including approaches to recruitment and participant autonomy. The dilemmas of (...) confidentiality within a self-labelled and easily identifiable population are resolved. Further, unexpected challenges and risks to participant safety created through adherence to institutional ethical research frameworks are rectified. Importantly, the authors seek to avoid revictimization of participants and to instead empower students in their responses to violence, harassment and bullying that they may have experienced. The authors point to utilization of theoretical foundations and continual reflexive improvement as elements of best practice for those seeking to research minority populations, and in projects marked by the participation of those deemed vulnerable and high-risk. (shrink)

Background: Adolescence is a period with physical, psychological, biological, intellectual, and social changes in which there is usually little perception of risk. COVID-19 has generated constant situations of change and uncertainty worldwide. During the pandemic, the acquisition of preventive behaviors has been relevant. Various studies carried out with adults associate risk perception and the implementation of preventive behaviors with knowledge about the COVID-19 and with age, but there are not many studies with adolescents. Therefore, the objective is to (...) validate, in Spanish, the questionnaire of the knowledge, attitudes, risk perceptions, and practices of adolescents toward the pandemic, and analyze it according to sociodemographic characteristics.Method: This study was a descriptive cross-sectional study, which included adolescents between the ages of 12–18. First, a translation and a back-translation of the questionnaire were performed. The questionnaire was presented in several high schools chosen by convenience sampling and following a non-probabilistic snowball sampling. Reliability and validity analyses were then carried out and the relationships between the different sociodemographic variables were analyzed.Results: The reliability of the questionnaire is acceptable. Knowledge was higher in women, and in those with a higher level of education; and were lower in those who lived in smaller towns, as well as in those who had a member of their family receiving financial aid. In terms of attitudes and risk perceptions, younger adolescents had higher scores, and those who had a member of their family receiving financial aid, lower.Conclusion: The questionnaire is a reliable tool in the Spanish adolescent population. Knowledge was influenced by gender, place of residence, level of education, and financial aid. Attitudes and risk perceptions were influenced by age and financial aid. For practices, no predictors were found. In general, adolescents scored lower on knowledge about COVID-19, but they scored higher on COVID-19 safety practices. (shrink)

The agro-pastoral ecotone, an ecological transition zone connecting adjacent areas of agricultural planting area and grassland animal husbandry, has three features: a complex natural condition, relatively pronounced population pressure, and a fragile ecological environment. In this study, we conducted an ecosystem risk assessment in the western part of Jilin Province, China, based on multiscale and multitemporal remote sensing images and land-use data. Furthermore, we focused on land-use change from 1995 to 2015 by applying the dynamic change information survey method (...) and carrying out a transfer track analysis. The results revealed three main findings. The ecological risk index at the scale of 3 km × 3 km harbors significant spatial correlation. The ecological risk index of unutilized land, forest land, and grassland is relatively high for each, and their anti-interference ability is weak, while the ecological risk index of construction land and water area is the lowest. Human interference, e.g., construction activities and cultivated land occupation, is the leading factor driving the exacerbation of ecological risk and frequent land-use type conversions. At the study period’s end, a trend of slight contraction in the high-risk areas was found, indicating that land-use regulation and land protection policies have had significantly positive impact upon the lands’ ecological value. The overall study identified a reasonable research scale for eco-environmental risk assessment and discerned relationships between regional land-use changes through geospatial analysis. Moreover, our findings can help provide practical case study information applicable to similar regions with agro-pastoral ecotones. (shrink)

Background and ObjectivesSchool bullying threatens the health of children and adolescents, such as mental health disorders, social deviant behaviors, suicidal behaviors, and coping difficulties. The present study aims to address prevalence rates of both traditional and cyber school bullying perpetration, and the associations between self-control, parental involvement, experiencing conflicts with parents, experiencing interparental conflict, and risk behaviors, and school bullying perpetration among Chinese children and adolescents.MethodThis study used data from a national representative school bullying survey among children and adolescents (...) from all grades in seven cities in China. Negative binomial regression was used to estimate the effects of these predictive factors on traditional and cyber school bullying perpetration, respectively. Seven control variables were included, such as gender, boarding school, family socioeconomic status, and parents’ education levels.ResultsThe sample comprised 52% female, 18% at boarding school, 70% of the participants’ academic performance was average or above. Approximately 17.3% of the participants reported participating in traditional school bullying against their peers, and 7.8% perpetrated cyberbullying behaviors. Also, after controlling sociodemographic characteristics and high self-control, parental involvement reduced the likelihood of traditional and cyberbullying perpetrating. Experiencing interparental conflict and risk behavior was significantly associated with increased perpetration of traditional and cyber school bullying. We found that having a conflict with parents was significantly associated with cyberbullying perpetration.ImplicationsFindings have implications for practice. Anti-bullying intervention programs targeting this population should consider these factors. For example, school administrators may develop school programs involving parents in the efforts and interventions workshops improving children and adolescents’ levels of self-control. Limitations are also discussed. (shrink)

BackgroundInternational partnerships in research are receiving ever greater attention, given that technology has diminished the restriction of geographical barriers with the effects of globalisation becoming more evident, and populations increasingly more mobile.DiscussionIn this article, we examine the merits and risks of such collaboration even when strict universal ethical guidelines are maintained. There has been widespread examples of outcomes beneficial and detrimental for both high and low –income countries which are often initially unintended.SummaryThe authors feel that extreme care and (...) forethought should be exercised by all involved parties, despite the fact that many implications from such international work can be extremely hard to predict. However ultimately the benefits gained by enhancing medical research and philanthropy are too extensive to be ignored. (shrink)

Global health conditions are marked by inequities due mostly to poverty and lack of access to healthcare services. In a Pandemic setting, Mayan Communities in the Quintana Roo State in Mexico are a good example of how these disparities are exacerbated. First, they may have difficulty in adhering to directives to stay home from work because of the nature of their job, and the necessity to work, their living conditions are marked by crowding and sometimes lack of basic sanitation. Other (...) susceptibilities generally considered are the underlying host factors and medical conditions that may increase the risk of disease or of complications of disease. In general, our native communities experience a high degree of socio-economic marginalization and are at disproportionate risk in public health emergencies, becoming even more vulnerable during this global pandemic, owing to factors such as their lack of access to effective monitoring and early-warning systems, and adequate health and social services. (shrink)

This book examines historical approaches and current research and practice related to the education of adolescents placed at risk of school failure as a result of social and economic conditions. One major goal is to expand the intellectual exchange among researchers, policymakers, practitioners, and concerned citizens on factors influencing the achievement of poor and minority youth, specifically students in middle and high schools. Another is to encourage increased dialogue about policies and practices that can make a difference in (...) educational opportunities and outcomes for these students. Although the chapters in this volume are not exhaustive, they represent an array of theoretical and methodological approaches that provide readers with new and diverse ways to think about issues of educational equality and opportunity in the United States. A premise that runs through each chapter is that school success is possible for poor and minority adolescents if adequate support from the school, family, and community is available. *The conceptual approach places the research and practice on students placed at risk in a historical context and sets the stage for an important reframing of current definitions, research, policies, and practices aimed at this population. *Multiple research methodologies allow for comparisons across racial and ethnic groups as well as within groups, and contribute to different and complementary insights. Section III, "Focus on African-American Students," specifically addresses gender and social class differences among African-American adolescents. *Current reform strategies presently being implemented in schools throughout the United States are presented and discussed. These strategies or programs highlight how schools, families, and communities can apply research findings like the ones this book presents, thus bridging the often wide gap between social science research and educational practice. (shrink)

Background In long-term care, registered nurses and other care providers often experience tensions between ideals and realities in the delivery of services, which can result in stress of conscience. Burnout, low quality of care and a tendency to leave the profession are perceived as consequences. Objectives This study aimed to identify the socio-demographic and work-related factors associated with a high level of stress of conscience, particularly between nursing occupations. Research design A cross-sectional survey was conducted among care providers who (...) worked in Norwegian nursing homes and home care services in the spring of 2021. The sample consisted of 950 registered nurses and 1143 other care providers. Data were collected online using the Stress of Conscience Questionnaire (SCQ). Ethical considerations Participation was voluntary and based on consent. The study was approved by the Norwegian Center for Research Data. Results Registered nurses were nearly twice as likely to report high levels of stress of conscience compared to other care providers in long-term care. In addition, being a female, living alone, caring for their own children, working in an institution (versus home based), working >75% time, working shifts, not having scheduled meetings for ethical reflection and working in municipalities with a higher population density were factors associated with a high level of SCQ score. Discussion Knowledge of factors that increase the risk of high SCQ scores in registered nurses provides opportunities for prevention. Managers in long-term care should pay more attention to how work is distributed between the occupational groups and should facilitate real opportunities for ethical reflection. Conclusions The results of this study show that registered nurses have particular exposure to high levels of stress of conscience compared to other care providers in long-term care. Particular attention should be paid to registered nurses working in nursing homes. (shrink)

The main value of carrier detection in the general population is to determine reproductive risks. In this manuscript I examine the practice of providing carrier screening programs in the school setting. While the data show that high school screening programs can achieve high uptake, I argue that this may reflect a lack of full understanding about risks, benefits, and alternatives, and the right not to know. It may also reflect the inherent coercion in group testing, particularly for adolescents (...) who are prone to peer pressure. The problem of carrier screening in the schools is compounded when the condition has a predilection for certain groups based on race, ethnicity or religion. I examine programs around the world that seek to test high school students for Tay Sachs and Cystic Fibrosis carrier status. I argue that carrier programs should be designed so as to minimize stigma and to allow individuals to refuse. The mandatory school environment cannot achieve this. Rather, I conclude that screening programs should be designed to attract young adults and not adolescents to participate in a more voluntary venue. (shrink)

BackgroundThe increased risk of developing attention-deficit hyperactivity disorder (ADHD) in extremely preterm infants is well-documented. Better understanding of perinatal risk factors, particularly those that are modifiable, can inform prevention efforts.MethodsWe examined data from the Extremely Low Gestational Age Newborns (ELGAN) Study. Participants were screened for ADHD at age 10 with the Child Symptom Inventory-4 (N = 734) and assessed at age 15 with a structured diagnostic interview (MINI-KID) to evaluate for the diagnosis of ADHD (N = 575). We (...) studied associations of pre-pregnancy maternal body mass index (BMI), pregestational and/or gestational diabetes, maternal smoking during pregnancy (MSDP), and hypertensive disorders of pregnancy (HDP) with 10-year and 15-year ADHD outcomes. Relative risks were calculated using Poisson regression models with robust error variance, adjusted for maternal age, maternal educational status, use of food stamps, public insurance status, marital status at birth, and family history of ADHD. We defined ADHD as a positive screen on the CSI-4 at age 10 and/or meeting DSM-5 criteria at age 15 on the MINI-KID. We evaluated the robustness of the associations to broadening or restricting the definition of ADHD. We limited the analysis to individuals with IQ ≥ 70 to decrease confounding by cognitive functioning. We evaluated interactions between maternal BMI and diabetes status. We assessed for mediation of risk increase by alterations in inflammatory or neurotrophic protein levels in the first week of life.ResultsElevated maternal BMI and maternal diabetes were each associated with a 55–65% increase in risk of ADHD, with evidence of both additive and multiplicative interactions between the two exposures. MSDP and HDP were not associated with the risk of ADHD outcomes. There was some evidence for association of ADHD outcomes with high levels of inflammatory proteins or moderate levels of neurotrophic proteins, but there was no evidence that these mediated the risk associated with maternal BMI or diabetes.ConclusionContrary to previous population-based studies, MSDP and HDP did not predict ADHD outcomes in this extremely preterm cohort, but elevated maternal pre-pregnancy BMI, maternal diabetes, and perinatal inflammatory markers were associated with increased risk of ADHD at age 10 and/or 15, with positive interaction between pre-pregnancy BMI and maternal diabetes. (shrink)

In the developing world, the dramatic male bias in tobacco use is usually ascribed to pronounced gender disparities in social, political, or economic power. This bias might also reflect under-reporting by woman and/or over-reporting by men. To test the role of gender inequality on gender differences in tobacco use we investigated tobacco use among the Aka, a Congo Basin foraging population noted for its exceptionally high degree of gender equality. We also tested a sexual selection hypothesis—that Aka men’s tobacco (...) use is related to risk taking. Tobacco use, income, tobacco purchases, tobacco sharing, reasons for using tobacco, risk taking, and other variables were measured using structured surveys and peer reports. Tobacco use was verified by testing for salivary cotinine, a nicotine metabolite. Contrary to expectations, we found a very large male bias in tobacco use. Low levels of use among females appeared to be explained by aversions to tobacco, concerns over its negative effects on fetal health, and a desire to attract husbands, who prefer nonsmoking wives. High male use appeared to be related to a desire to enhance hunting abilities and attract and/or retain wives, who prefer husbands that smoke. We conclude that low levels of smoking by Aka women are better explained by the hypothesis that women evolved to avoid plant toxins to protect their fetuses and nursing infants. High male use might be better explained by sexual selection. We also highlight the important role that recreational drugs appear to play in hunter-gatherer sharing relationships. (shrink)

Some early phase clinical studies of candidate HIV cure and remission interventions appear to have adverse medical risk–benefit ratios for participants. Why, then, do people participate? And is it ethically permissible to allow them to participate? Recent work in decision theory sheds light on both of these questions, by casting doubt on the idea that rational individuals prefer choices that maximise expected utility, and therefore by casting doubt on the idea that researchers have an ethical obligation not to enrol (...) participants in studies with high risk–benefit ratios. This work supports the view that researchers should instead defer to the considered preferences of the participants themselves. This essay briefly explains this recent work, and then explores its application to these two questions in more detail. (shrink)