Criminal Prohibition of Wrongful Re‑identification: Legal Solution or Minefield for Big Data?

The collapse of confidence in anonymization (sometimes also known as de-identification) as a robust approach for preserving the privacy of personal data has incited an outpouring of new approaches that aim to fill the resulting trifecta of technical, organizational, and regulatory privacy gaps left in its wake. In the latter category, and in large part due to the growth of Big Data–driven biomedical research, falls a growing chorus of calls for criminal and penal offences to sanction wrongful re-identification of “anonymized” data. This chorus cuts across the fault lines of polarized privacy law scholarship that at times seems to advocate privacy protection at the expense of Big Data research or vice versa. Focusing on Big Data in the context of biomedicine, this article surveys the approaches that criminal or penal law might take toward wrongful re-identification of health data. It contextualizes the strategies within their respective legal regimes as well as in relation to emerging privacy debates focusing on personal data use and data linkage and assesses the relative merit of criminalization. We conclude that this approach suffers from several flaws and that alternative social and legal strategies to deter wrongful re-identification may be preferable.     

Focus: The Science of Stress: Can Maternal Prenatal Self-Reported and Physiological Distress Predict Postnatal Caregiving Practices?

Maternal prenatal distress is associated with child outcomes, including health, neurocognitive, and socio-emotional development. Knowledge on underlying mechanisms is limited, yet relevant for prevention and intervention. This study investigated whether maternal prenatal distress predicts specific caregiving practices that are known for their effects on child outcomes. Caregiving practices studied were maternal caregiving quality and the initiation and course of breastfeeding and room-sharing. We hypothesized that more maternal prenatal distress would be associated with altered caregiving practices. Participants were 174 healthy mother-child dyads. During the 37^th week of pregnancy maternal self-reported distress was assessed using questionnaires, and physiological stress by collecting saliva cortisol. Maternal caregiving quality was observed in postnatal week 5 during infant bathing. Weekly diaries on breastfeeding and daily diaries on room-sharing were completed during the first 6 postnatal months. In a regression analysis, no associations between maternal prenatal distress and caregiving quality were found. Multilevel analyses indicated that maternal prenatal evening cortisol was positively related to the initiation of breastfeeding and room-sharing. Replications are warranted, but these results suggest that breastfeeding and room-sharing initiation may be part of a mechanism underlying links between maternal prenatal physiological stress and child outcomes. As other prenatal cortisol markers and self-reported distress were not found to be related to the caregiving practices, it is likely that alternative mechanisms (co-)exist in explaining links between maternal prenatal distress and child outcomes. Future replication research including child outcomes and (other) potential mechanisms will inform prevention and intervention programs fostering healthy pregnancies and child development.     

When a pet dies: Religious issues,euthanasia and strategies for coping with bereavement

Abstract

Sixty-eight people from a variety of religious backgrounds and who had experienced the death of a companion animal were interviewed. Questions covered their personal experience of their pet's death, the role that their religion played in this experience and factors affecting how well they coped with the death. Individuals varied widely in their emotional response to the death of their pet. Demographic variables were relatively weak predictors of the distress experienced, the strongest predictor of distress being whether or not the animal was euthanized. Religion did not affect the level of distress that participants reported or the veterinary treatment, including euthanasia, that they considered appropriate. Nevertheless, 56 percent of participants believed in an afterlife for their pet and generally found this belief comforting. Having someone to talk to, and being included in decision-making were also reported to be helpful.     

Association between Prenatal and Postnatal Psychological Distress and Toddler Cognitive Development: A Systematic Review

PurposeMaternal psychological distress is one of the most common perinatal complications, affecting up to 25% of pregnant and postpartum women. Research exploring the association between prenatal and postnatal distress and toddler cognitive development has not been systematically compiled. The objective of this systematic review was to determine the association between prenatal and postnatal psychological distress and toddler cognitive development.MethodsArticles were included if: a) they were observational studies published in English; b) the exposure was prenatal or postnatal psychological distress; c) cognitive development was assessed from 13 to 36 months; d) the sample was recruited in developed countries; and e) exposed and unexposed women were included. A university-based librarian conducted a search of electronic databases (Embase, CINAHL, Eric, PsycInfo, Medline) (January, 1990-March, 2014). We searched gray literature, reference lists, and relevant journals. Two reviewers independently evaluated titles/abstracts for inclusion, and quality using the Scottish Intercollegiate Guideline Network appraisal tool for observational studies. One reviewer extracted data using a standardized form.ResultsThirteen of 2448 studies were included. There is evidence of an association between prenatal and postnatal distress and cognitive development. While variable effect sizes were reported for postnatal associations, most studies reported medium effect sizes for the association between prenatal psychological distress and cognitive development. Too few studies were available to determine the influence of the timing of prenatal exposure on cognitive outcomes.ConclusionFindings support the need for early identification and treatment of perinatal mental health problems as a potential strategy for optimizing toddler cognitive development.     

Screening for Distress in Routine Oncological Care—A Survey in 520 Melanoma Patients

Introduction

Despite the increasing incidence of melanoma little is known about patients'' emotional distress associated with this disease. Supplemented by the problem list (PL), the distress thermometer (DT) is a recommended screening instrument to measure psychosocial distress in cancer patients. Our objective was to explore the acceptance and the feasibility of the DT and PL as a concise screening tool in an ambulatory setting for routine care and to elucidate determinants of distress in melanoma patients with regard to sociodemographic and clinical variables.

Methods

Consecutive melanoma outpatients were asked to complete the DT with the PL prior to their scheduled consultation. Demographic and clinical data were obtained from the patients'' charts. Clinical data included melanoma stage, time since diagnosis, previous treatment, current treatment, and other cancer disease.

Results

Out of 734 patients recruited into the study, 520 patients (71%) completed both the DT and the PL. Forty-seven percent met the ≥5 cut-off score for distress. Younger and employed patients reported higher distress than older and retired patients. A cut-off score of ≥5 was closely associated with self-reported emotional sources of distress, with practical problems, especially at work, family problems (dealing with the partner), and physical problems like pain, appearance, getting around, and nausea. Apart from higher distress under current systemic treatment, no associations were found between distress and clinical data.

Conclusion

The DT together with the PL seems to be an economically reasonable screening tool to measure psychosocial distress in melanoma patients. In particular, younger melanoma patients who are currently employed are prone to experience distress at some point after diagnosis, but there appears to be almost no association between clinical data and the extent of distress. To characterize the impact of distress on disease outcome and quality of life in melanoma patients, further research is needed.     

Impact of Psychopathy on Moral Judgments about Causing Fear and Physical Harm

Psychopathy is a personality variable associated with persistent immoral behaviors. Despite this, attempts to link moral reasoning deficits to psychopathic traits have yielded mixed results with many findings supporting intact moral reasoning in individuals with psychopathic traits. Abundant evidence shows that psychopathy impairs responses to others’ emotional distress. However, most studies of morality and psychopathy focus on judgments about causing others physical harm. Results of such studies may be inconsistent because physical harm is an imperfect proxy for emotional distress. No previous paradigm has explicitly separated judgments about physical harm and emotional distress and assessed how psychopathy affects each type of judgment. In three studies we found that psychopathy impairs judgments about causing others emotional distress (specifically fear) but minimally affects judgments about causing physical harm and that judgments about causing fear predict instrumental aggression in psychopathy. These findings are consistent with reports linking psychopathy to insensitivity to others’ fear, and suggest that sensitivity to others’ fear may play a fundamental role in the types of moral decision-making impaired by psychopathy.     

Antenatal Maternal Emotional Distress and Duration of Pregnancy

Objective(s)

We sought to prospectively study the association between antenatal emotional distress and gestational length at birth as well as preterm birth.

Study Design

We followed up 40,077 primiparous women in the Norwegian Mother and Child Cohort Study. Emotional distress was reported in a short form of the Hopkins Symptom Checklist-25 (SCL-5) at 17 and 30 weeks of gestation. Gestational length at birth, obtained from the Medical Birth Registry of Norway, was used as continuous (gestational length in days) and categorized (early preterm (22–31 weeks) and late preterm (32–36 weeks) versus term birth (≥37 weeks)) outcome, using linear and logistic regression analysis, respectively. Births were divided into spontaneous and provider-initiated.

Results

Of all women, 7.4% reported emotional distress at 17 weeks, 6.0% at 30 weeks and 5.1% had a preterm birth. All measurements of emotional distress at 30 weeks were significantly associated with a reduction of gestational length, in days, for provider-initiated births at term. Emotional distress at 30 weeks showed a reduced duration of pregnancy at birth of 2.40 days for provider-initiated births at term. An increase in emotional distress from 17 to 30 weeks was associated with a reduction of gestational length at birth of 2.13 days for provider-initiated births at term. Sustained high emotional distress was associated with a reduction of gestational length at birth of 2.82 days for provider-initiated births. Emotional distress did not increase the risk of either early or late preterm birth.

Conclusion

Emotional distress at 30 weeks, an increase in emotional distress from 17 to 30 weeks and sustained high levels of emotional distress were associated with a reduction in gestational length in days for provider-initiated term birth. We found no significant association between emotional distress and the risk of preterm birth.     

Legal issues in accidents caused by sleepiness

The impact of shift-work on sleep, performance and general health appears to be substantial. The most immediate consequence of night shiftwork is sleep loss. The aim of the present paper is to describe legal cases involving accidents attributed to sleepiness or fatigue, mainly as a consequence of shift-work or prolonged work hours, in the UK, USA and Australia. The paper will describe how legal systems are dealing with such incidents and how this may change in the future. Accidents related to sleepiness may result in criminal prosecution, for example charges of culpable driving. For acts performed while a person is sleeping (e.g., motor vehicle accidents), the legal question of voluntariness may be raised. The issue of employers' liability in such cases is contentious. Special liability regimes are in place to cover employers' liability. Employers may be deemed liable for injuries of third parties caused by wrongful acts of employees committed in the course of their employment. In the future, it is likely that employers will need to take greater precautions to reduce sleepiness and fatigue in the workplace, especially where the risk to public and environmental safety, health and productivity are significant.     

Gender-specific effects of prenatal stress on emotional reactivity and stress physiology of goat kids

The aims of this study were to investigate the effects of maternal stress during pregnancy on the emotional reactivity, the hypothalamo-pituitary-adrenocortical (HPA) axis, and the sympatho-adrenomedullary (SAM) system of goat offspring according to their gender, and to investigate the role of maternal cortisol in prenatal stress effects. Goats were exposed to ten transports in isolation or ten ACTH injections (0.125 IU/kg body weight) during the last third of pregnancy. Control goats remained undisturbed. No effect of repeated transport during the last third of pregnancy was found on basal cortisol concentrations of the offspring. However, an increase in phenylethanolamine N-methyl transferase activity in the adrenals was observed in prenatally stressed kids compared to control kids (P = 0.031). In the presence of novelty, prenatally stressed female kids were more active (P = 0.049) than control females; they also showed more signs of arousal (P = 0.039) and tended to explore more of their environment (P = 0.053) in reaction to a startling stimulus. On the contrary, prenatally stressed male kids tended to be less active (P = 0.051) than control male kids but showed more signs of distress (P = 0.047) in the presence of novelty. Intermediate effects were found on the emotional reactivity to novelty of kids born from dams given injections of ACTH. In conclusion, transport stress in pregnant goats affects the sympatho-adrenomedullary system and the emotional reactivity of their offspring in a gender-specific manner. Moreover, the effects of prenatal transport and ACTH injections showed some similarities but differed in some critical details.     

Adjustment Disorders as a Stress-Related Disorder: A Longitudinal Study of the Associations among Stress,Resources, and Mental Health

Objective

Adjustment disorders are re-conceptualized in the DSM-5 as a stress-related disorder; however, besides the impact of an identifiable stressor, the specification of a stress concept, remains unclear. This study is the first to examine an existing stress-model from the general population, in patients diagnosed with adjustment disorders, using a longitudinal design.

Methods

The study sample consisted of 108 patients consecutively admitted for adjustment disorders. Associations of stress perception, emotional distress, resources, and mental health were measured at three time points: the outpatients’ presentation, admission for inpatient treatment, and discharge from the hospital. To evaluate a longitudinal stress model of ADs, we examined whether stress at admission predicted mental health at each of the three time points using multiple linear regressions and structural equation modeling. A series of repeated-measures one-way analyses of variance (rANOVAs) was performed to assess change over time.

Results

Significant within-participant changes from baseline were observed between hospital admission and discharge with regard to mental health, stress perception, and emotional distress (p<0.001). Stress perception explained nearly half of the total variance (44%) of mental health at baseline; the adjusted R² increased (0.48), taking emotional distress (i.e., depressive symptoms) into account. The best predictor of mental health at discharge was the level of emotional distress (i.e., anxiety level) at baseline (β = −0.23, R² _corr = 0.56, p<0.001). With a CFI of 0.86 and an NFI of 0.86, the fit indices did not allow for acceptance of the stress-model (C_min/df = 15.26; RMSEA = 0.21).

Conclusions

Stress perception is an important predictor in adjustment disorders, and mental health-related treatment goals are dependent on and significantly impacted by stress perception and emotional distress.     

DEADLY PLURALISM? WHY DEATH‐CONCEPT,DEATH‐DEFINITION,DEATH‐CRITERION AND DEATH‐TEST PLURALISM SHOULD BE ALLOWED,EVEN THOUGH IT CREATES SOME PROBLEMS

Death concept, death definition, death criterion and death test pluralism has been described by some as a problematic approach. Others have claimed it to be a promising way forward within modern pluralistic societies. This article describes the New Jersey Death Definition Law and the Japanese Transplantation Law. Both of these laws allow for more than one death concept within a single legal system. The article discusses a philosophical basis for these laws starting from John Rawls' understanding of comprehensive doctrines, reasonable pluralism and overlapping consensus. It argues for the view that a certain legal pluralism in areas of disputed metaphysical, philosophical and/or religious questions should be allowed, as long as the disputed questions concern the individual and the resulting policy, law or acts based on the policy/law, do not harm the lives of other individuals to an intolerable extent. However, while this death concept, death definition, death criterion and death test pluralism solves some problems, it creates others.     

The rise in extreme mental distress among LGBT people during Trump’s rise and presidency

Lesbian, gay, bisexual, and transgender (LGBT) advocates argue that President Donald Trump’s 2016 election victory and his administration's agenda raised concerns about changes to legal rights and discrimination based on sexual orientation and gender identity. Using data on more than one million randomly sampled people during 2014–2020, this study estimates event study and difference-in-differences models to examine whether the prevalence of extreme mental distress (the percentage who reported major mental and emotional problems in all 30 of the last 30 days) increased among LGBT people relative to non-LGBT people after Trump became the Republican presidential frontrunner in early 2016. The difference-in-differences estimate indicates that the extreme mental distress gap between LGBT people and non-LGBT people increased from 1.8 percentage points during 2014–2015 to 3.8 percentage points after Trump’s presidency became a real possibility in early 2016.     

Genetic counseling on a molecular basis for Huntington's chorea

The gene responsible for Huntington Disease has been mapped at the end of the short arm of chromosome 4. Different polymorphic probes from the immediate vicinity of the gene are available and provide accurate tools for the identification of carriers of the gene. The presymptomatic testing of adults or the prenatal testing (exclusion testing) of the unborn child must be considered with great caution, it requires a multidisciplinary approach and will benefit from intensive collaboration with the lay organizations. Presymptomatic testing will presumably find a much wider application when it can be coupled to an effective preventive treatment.     

Comparison of emotion recognition from facial expression and music

The recognition of basic emotions in everyday communication involves interpretation of different visual and auditory clues. The ability to recognize emotions is not clearly determined as their presentation is usually very short (micro expressions), whereas the recognition itself does not have to be a conscious process. We assumed that the recognition from facial expressions is selected over the recognition of emotions communicated through music. In order to compare the success rate in recognizing emotions presented as facial expressions or in classical music works we conducted a survey which included 90 elementary school and 87 high school students from Osijek (Croatia). The participants had to match 8 photographs of different emotions expressed on the face and 8 pieces of classical music works with 8 offered emotions. The recognition of emotions expressed through classical music pieces was significantly less successful than the recognition of emotional facial expressions. The high school students were significantly better at recognizing facial emotions than the elementary school students, whereas girls were better than boys. The success rate in recognizing emotions from music pieces was associated with higher grades in mathematics. Basic emotions are far better recognized if presented on human faces than in music, possibly because the understanding of facial emotions is one of the oldest communication skills in human society. Female advantage in emotion recognition was selected due to the necessity of their communication with the newborns during early development. The proficiency in recognizing emotional content of music and mathematical skills probably share some general cognitive skills like attention, memory and motivation. Music pieces were differently processed in brain than facial expressions and consequently, probably differently evaluated as relevant emotional clues.     

Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study

Background

Systemic sclerosis, or scleroderma, is a chronic and rare connective tissue disease with negative physical and psychological implications. Sources of emotional distress and the impact they have on the lives of people with scleroderma are not well understood.

Objectives

To gain an in-depth understanding of the emotional experiences and sources of emotional distress for women and men living with scleroderma through focus group discussions.

Methods

Three semi-structured focus group discussions were conducted (two in English, one in French) with a total of 22 people with scleroderma recruited through the Scleroderma Society of Ontario in Hamilton, Ontario and a scleroderma clinic in Montreal, Canada. Interviews were recorded, transcribed, and then coded for emerging themes using thematic inductive analysis.

Results

Core themes representing sources of emotional distress were identified, including: (a) facing a new reality; (b) the daily struggle of living with scleroderma; (c) handling work, employment and general financial burden; (d) changing family roles; (e) social interactions; and (f) navigating the health care system. Collectively, these themes refer to the stressful journey of living with scleroderma including the obstacles faced and the emotional experiences beginning prior to receiving a diagnosis and continuing throughout the participants’ lives.

Conclusion

Scleroderma was portrayed as being an unpredictable and overwhelming disease, resulting in many individuals experiencing multiple sources of emotional distress. Interventions and supportive resources need to be developed to help individuals with scleroderma and people close to them manage and cope with the emotional aspects of the disease.     

On the relationship of emotional abilities and prosocial behavior

The ability to perceive and infer the meaning of facial expressions has been considered a critical component of emotional intelligence being essential for successful social functioning: Longitudinal findings suggest that the ability to recognize emotion cues is related to positive social interactions. Moreover, pronounced recognition abilities for at least some emotions facilitate prosocial behavior in everyday situations. Integrating paradigms from behavioral economics and psychometrics, we used an interdisciplinary approach to study the relationship between prosociality as trait cooperativeness and the ability to recognize emotions in others. We measured emotion recognition accuracy (ERA) using a multivariate test battery. We captured prosocial behavior in standard socio-economic games, along with spontaneous emotion expressions. Structural equation modeling revealed no significant relationship between overall ERA and prosocial behavior. However, modeling emotion-specific factors suggested that more prosocial individuals are better in recognizing fear and tend to express more spontaneous emotions during the prisoner's dilemma. In all, cooperative individuals seem to be more sensitive to the distress of others and more expressive, possibly fostering reciprocal interactions with like-minded others.     

A burden from birth? Non‐invasive prenatal testing and the stigmatization of people with disabilities

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective.     

Death and family life in the past

As recently as 1970 about one-fifth of the children living in single-parent households resided in ones created by the death of a father. In colonial and nineteenth-century America, death was a much more important factor in disrupting parent-child relationships than it is today. Past societal reaction to the death of a parent continues to influence social policy; for example, widows and their dependent children receive more public assistance than divorced mothers or single mothers with children born out-of-wedlock. Although the material conditions for widows have improved over time, the social network available to help them cope with the emotional distress caused by the death of a husband probably has diminished.     

A Kantian ethics approach to moral bioenhancement

It seems, at first glance, that a Kantian ethics approach to moral enhancement would tend towards the position that there could be no place for emotional modulation in any understanding of the endeavour, owing to the typically understood view that Kantian ethics does not allow any role for emotion in morality as a whole. It seems then that any account of moral bioenhancement which places emotion at its centre would therefore be rejected. This article argues, however, that this assumption is incorrect. Given later writings by Kant on the role of sympathy, and taking into account other concerns in Kantian ethics (such as bodily integrity), it may in fact be the case that Kantian ethics would allow for an account of moral bioenhancement through emotional modulation, and that in some (rare) cases such an intervention might even be considered to be a duty.     

Beyond Critique: Rethinking Roles for the Anthropology of Mental Health

The current supremacy of the ‘bio-bio-bio’ model within the discipline of psychiatry has progressively marginalized social science approaches to mental health. This situation begs the question, what role is there for the anthropology of mental health? In this essay, I contend that there are three essential roles for the anthropology of mental health in an era of biological psychiatry. These roles are to (i) provide a meaningful critique of practices, beliefs, and movements within current psychiatry; (ii) illuminate the socio-cultural, clinical, and familial context of suffering and healing regarding emotional distress/mental illness; and (iii) act as a catalyst for positive change regarding healing, services and provisions for people with emotional distress/mental illness. My argument is unified by my contention that a credible anthropology of mental health intending to make a societal contribution should offer no opposition without proposition. In other words, any critique must be counter-balanced by the detailing of solutions and proposals for change. This will ensure that the anthropology of mental health continues to contribute critical knowledge to the understanding of mental suffering, distress, and healing. Such social and cultural approaches are becoming especially important given the widespread disenchantment with an increasingly dominant biological psychiatry.