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OBJECTIVE: This study aimed to better understand the interpersonal influences on a pregnant individual's decision of how to treat nausea and vomiting during pregnancy using a qualitative approach. STUDY DESIGN: A semistructured interview guide was developed to assess pregnancy symptoms, decision-making regarding treating nausea, and interpersonal influences on treatment decisions. Interviews were conducted with 17 individuals enrolled in a neuroimaging and behavioral study of prenatal exposure to cannabis who used medication and/or cannabis to treat symptoms associated with pregnancy. RESULTS: Interviews revealed four groups of stakeholders who influenced participant decision-making: medical providers, partners, family, and friends. Influence was categorized as either positive, negative, neutral, or absent (if not discussed or participant chose not to disclose). Those in the medication group reported only positive or neutral feedback from friends, family, partners, and providers. In contrast, the cannabis group participants reported positive feedback from friends, mixed feedback from family and partners, and negative feedback from providers, which was often felt to be stigmatizing. Many in the cannabis group also reported varying feedback from different medical providers. While the cannabis group frequently reported eliciting feedback from friends, family, and partners, the medication group often did not. CONCLUSION: Medication group participants reported entirely positive feedback from providers and often did not mention any feedback at all from partners, family, and friends. Cannabis group participants reported much more varied feedback, both positive and negative, from a variety of interpersonal contacts and sometimes decided to conceal their treatment choice after receiving or fearing negative feedback. We recommend further research into the health outcomes of pregnant patients who chose not to discuss their treatment decisions with providers, family, partners, or friends. We also suggest further study of possible reasons behind a lack of disclosure, including fear of stigma and/or legal consequences. KEY POINTS: · Providers, partners, family, friends gave feedback.. · Medication group got positive feedback.. · Cannabis group stigmatized by providers.. · Cannabis group got mixed feedback..
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Justice is a core principle in bioethics, and a fair opportunity to achieve health is central to this principle. Racism and other forms of prejudice, discrimination, or bias directed against people on the basis of their membership in a particular racial or ethnic group are known contributors to health inequity, defined as unjust differences in health or access to care. Though hospital-based ethics committees and consultation services routinely address issues of justice that arise in the course of patient care, there is variability in whether and how racism and other causes of health inequities are addressed. In this paper, we describe a novel structure and process for addressing health equity within clinical ethics consultation. In addition, we discuss the barriers and challenges to its success, many of which are rooted in the identities, norms and assumptions that underlie traditional clinical ethics consultation. We offer pragmatic recommendations and conclude with unresolved questions that remain as we work to adapt the structure of a clinical ethics consultation service to improve attention to issues of health equity and promote anti-racism in patient care and institutional policy.
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Consultoría Ética , Racismo , Atención a la Salud , Eticistas , Ética Clínica , HumanosRESUMEN
Stigma against patients with functional neurological disorder (FND) presents obstacles to diagnosis, treatment, and research. The lack of biomarkers and the potential for symptoms to be misunderstood, invalidated, or dismissed can leave patients, families, and healthcare professionals at a loss. Stigma exacerbates suffering and unmet needs of patients and families, and can result in poor clinical management and prolonged, repetitive use of healthcare resources. Our current understanding of stigma in FND comes from surveys documenting frustration experienced by providers and distressing healthcare interactions experienced by patients. However, little is known about the origins of FND stigma, its prevalence across different healthcare contexts, its impact on patient health outcomes, and optimal methods for reduction. In this paper, we set forth a research agenda directed at better understanding the prevalence and context of stigma, clarifying its impact on patients and providers, and promoting best practices for stigma reduction.
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OBJECTIVE: Predictive testing for familial disorders can guide healthcare and reproductive decisions. Familial disorders with onset in childhood (e.g., autism spectrum disorder [ASD]) are promising targets for presymptomatic prediction; however, little is known about parent perceptions of risk to their children in the presymptomatic period. The current study examined risk perceptions in parents of infants at high familial risk for ASD enrolled in a longitudinal study of brain and behavior development. METHODS: Semistructured interviews were conducted with 37 parents of high-risk infants during the presymptomatic window (3-15 months) that precedes an ASD diagnosis. Infants were identified as high familial risk due to having an older sibling with ASD. Parent interview responses were coded and interpreted to distill emerging themes. RESULTS: The majority of parents were aware of the increased risk of ASD for their infants, and risk perceptions were influenced by comparisons to their older child with ASD. Parents reported a variety of negative emotions in response to perceived risk, including worry, fear, and sadness, and described impacts of perceived risk on their behavior: increased vigilance to emerging symptoms, altered reproductive and healthcare decisions, and seeking ongoing assessment through research. CONCLUSIONS: Parents of children at high familial risk for childhood-onset disorders like ASD face a period of challenging uncertainty during early development. In anticipation of a future in which presymptomatic testing for ASD is made available, it is important to understand how parents react to and cope with the elevated-but still highly uncertain-risk conveyed by family history.
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Trastorno del Espectro Autista/genética , Predisposición Genética a la Enfermedad , Conocimientos, Actitudes y Práctica en Salud , Padres/psicología , Trastorno del Espectro Autista/psicología , Emociones/fisiología , Femenino , Humanos , Lactante , Entrevistas como Asunto , Estudios Longitudinales , Masculino , Factores de RiesgoRESUMEN
Novelty detection, a critical computation within the medial temporal lobe (MTL) memory system, necessarily depends on prior experience. The current study used functional magnetic resonance imaging (fMRI) in humans to investigate dynamic changes in MTL activation and functional connectivity as experience with novelty accumulates. fMRI data were collected during a target detection task: Participants monitored a series of trial-unique novel and familiar scene images to detect a repeating target scene. Even though novel images themselves did not repeat, we found that fMRI activations in the hippocampus and surrounding cortical MTL showed a specific, decrementing response with accumulating exposure to novelty. The significant linear decrement occurred for the novel but not the familiar images, and behavioral measures ruled out a corresponding decline in vigilance. Additionally, early in the series, the hippocampus was inversely coupled with the dorsal striatum, lateral and medial prefrontal cortex, and posterior visual processing regions; this inverse coupling also habituated as novelty accumulated. This novel demonstration of a dynamic adjustment in neural responses to novelty suggests a similarly dynamic allocation of neural resources based on recent experience.
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Mapeo Encefálico , Conducta Exploratoria/fisiología , Habituación Psicofisiológica/fisiología , Hipocampo/fisiología , Red Nerviosa/fisiología , Reconocimiento en Psicología/fisiología , Adulto , Análisis de Varianza , Femenino , Hipocampo/irrigación sanguínea , Humanos , Procesamiento de Imagen Asistido por Computador , Imagen por Resonancia Magnética , Masculino , Modelos Estadísticos , Red Nerviosa/irrigación sanguínea , Oxígeno/sangre , Tiempo de Reacción/fisiología , Lóbulo Temporal/irrigación sanguínea , Lóbulo Temporal/fisiología , Adulto JovenRESUMEN
BACKGROUND: Emerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy. METHODS: Parents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods. RESULTS: Almost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant's development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child's future support needs, and the potential impacts of inaccurate prediction. CONCLUSION: In qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing-to have more time to prepare and intervene early-could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed.
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Trastorno Autístico , Padres , Humanos , Lactante , Masculino , Femenino , Trastorno Autístico/diagnóstico , Adulto , Biomarcadores , Investigación Cualitativa , Trastorno del Espectro Autista/diagnósticoRESUMEN
LAY ABSTRACT: Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people - some of whom were parents, and some of whom were professionals working in research, health and education - about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child's specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant's needs, and creating opportunities for infants' to make choices and exercise control. People preferred respectful and accurate language - including the term 'support' (rather than 'intervention') and 'early-in-life' (rather than 'at-risk' of autism, or 'pre-emptive' when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful.
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Psychotherapy is a complex, multilayered process with the potential to bring about changes at multiple levels of functioning, from the neurobiology of the brain to the individual's role in the social world. Although studies of the mechanisms by which psychotherapy leads to change continue to appear, there remains much to be learned about how psychological interventions work. To guide explorations of how and for whom particular treatment approaches lead to change, researchers can rely on theory to identify potential loci for change and on translational research methods to integrate basic behavioral science and neuroscience with clinical science. In this article, we describe research linking individual differences in the self-regulation of personal goal pursuit with the etiology and treatment of mood disorders. The research draws upon regulatory focus theory as a model of self-regulation and on microintervention designs-controlled laboratory investigations of a specific therapeutic technique-to generate and test hypotheses about how psychological interventions can help to reverse maladaptive self-regulatory processes.
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Trastornos Mentales/terapia , Psicoterapia/métodos , Controles Informales de la Sociedad , Humanos , Trastornos Mentales/psicologíaRESUMEN
Debates about the ethics of human brain organoids have proceeded without the input of individuals whose brains are being modeled. Interviews with donors of biospecimens for brain organoid research revealed overall enthusiasm for brain organoids as a tool for biomedical discovery, alongside a desire for ongoing engagement with research teams to learn the results of the research, to allow transfer of decision-making authority over time, and to ensure ethical boundaries are not crossed. Future work is needed to determine the most feasible and resource-efficient way to longitudinally engage donors participating in brain organoid research.
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Bancos de Muestras Biológicas , Investigación Biomédica , Humanos , Donantes de Tejidos , Encéfalo , Organoides , Consentimiento InformadoRESUMEN
Neurotechnologies are rapidly being developed with the aim of alleviating suffering caused by disease and assisting individuals with various disabilities. As the capabilities and applications of neural devices advance, potential ethical challenges related to agency, identity, privacy, equality, normality and justice have been noted. We sought to explore attitudes toward these ethical challenges in two important, but understudied groups of stakeholders-members of the neural device industry and members of the general public. Survey responses from 66 industry professionals and 1088 members of the general public who do not work with neural devices were collected. After controlling for demographic differences between the groups (industry vs. general public; age, gender, racial/ethnic background), we found a large degree of consistency between the groups in their attitudes toward the ethical topic areas and the need for guiding ethical principles, but also some differences related to privacy, consent, and confidence in the neural device industry to incorporate ethical concerns into the design process. These data have implications for industry professionals tasked with designing and disseminating new neural devices, end-users of their products, and stakeholders at each step in between who must navigate the rapidly-growing landscape of advances in neurotechnology.
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Principios Morales , Neurociencias , Humanos , Privacidad , Encuestas y CuestionariosRESUMEN
Toward the end of a routine check-in appointment with your young patient-a 3-year-old boy recently diagnosed with autism spectrum disorder (ASD)-his mother shares concerns about his infant sister, currently 6 months old. The mother is aware that her daughter is at increased risk for ASD. She requests a magnetic resonance imaging (MRI) scan of her infant's brain, based on research she has read showing that MRI can be used to predict which infants will go on to develop ASD. The mother communicates that she is eager to know whether her daughter is going to develop autism so that she and her husband can prepare financially, and so she can place her daughter on the long waitlist for autism-specific services in her local community. As this family's psychiatrist, how should you respond to her request?
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Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Encéfalo , Preescolar , Femenino , Humanos , Lactante , Masculino , Madres , HermanosRESUMEN
Research using human fetal tissue has saved millions of lives through vaccines and other advances, but was markedly restricted by federal regulations in 2019. Although the restrictions were partially reversed in 2021, additional regulatory changes are needed to prevent further damage to essential research programs while preserving protection for human subjects.
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Investigación Fetal/legislación & jurisprudencia , Control Social Formal , Adulto , Anciano , Femenino , Investigación Fetal/ética , Gobierno , Humanos , Masculino , Persona de Mediana Edad , National Institutes of Health (U.S.) , Apoyo a la Investigación como Asunto/economía , Autoinforme , Estados UnidosRESUMEN
Universal screening for autism spectrum disorder (ASD) is recommended during pediatric primary care visits in the first 2 years of life. However, many children are missed by initial screening and not diagnosed with ASD until years later. Research efforts are underway to develop and evaluate new objective measures of risk for ASD that can be used in infancy, before symptoms emerge. Initial studies with these tests, particularly MRI-based screening for infants at high familial risk, have shown promise but have not yet been evaluated in clinical trials. We present the study design for a hypothetical clinical trial that would combine presymptomatic detection and intervention for ASD and consider, through commentaries from diverse perspectives, the ethical issues that should be anticipated in advance of beginning such trials. Commentators Drs Pruett and Piven address the social value of the proposed research and importance of researcher-bioethicist collaborations. Drs Estes and Wolff discuss the clinical potential and challenges of developing presymptomatic interventions for infants at risk for ASD. Dr Harrington takes a neurodiversity view of presymptomatic prediction and intervention and their implications for autistic identity and quality of life. Finally, Drs MacDuffie, Peay and Wilfond consider the potential risks and benefits that must be evaluated and weighed in the next phases of research on presymptomatic detection and intervention for ASD.
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Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/terapia , Diagnóstico Precoz , Intervención Médica Temprana , Humanos , Lactante , Proyectos de InvestigaciónRESUMEN
A central tension in pediatric research ethics arises from our desire to protect children from harm while also allowing progress toward discoveries that could improve child health. A prime example of this tension is research on a controversial yet increasingly common practice: the use of cannabis by women to treat nausea and vomiting of pregnancy. Studies of cannabis use in pregnancy face a combination of ethical hurdles because of the inclusion of pregnant women and involvement of a schedule I controlled substance. Given the growing need for research on the safety and efficacy of cannabis for nausea and vomiting of pregnancy, we reflect on the multiple historical contexts that have contributed to the challenge of studying cannabis use during pregnancy and make a case for the ethical rationale for such research.
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Ética en Investigación , Marihuana Medicinal/uso terapéutico , Náuseas Matinales/terapia , Pediatría/ética , Mujeres Embarazadas , Sujetos de Investigación , Antieméticos/efectos adversos , Diciclomina/uso terapéutico , Doxilamina/uso terapéutico , Aprobación de Drogas , Combinación de Medicamentos , Femenino , Humanos , Marihuana Medicinal/efectos adversos , Ondansetrón/uso terapéutico , Embarazo , Piridoxina/uso terapéutico , Teratógenos , Talidomida/efectos adversosRESUMEN
Sleep problems are prevalent in children with neurodevelopmental disabilities and are associated with the expression of restricted and repetitive behaviors (RRBs). Children (n = 57) with autism spectrum disorder (ASD, n = 38) or developmental delay (DD, n = 19) participated in multiple assessments of intellectual ability, ASD symptoms, and RRBs (3 timepoints for ASD, 2 for DD). Sleep problems assessed at age 4 via parent report were associated with trajectories of higher-order RRBs (sameness/ritualistic/compulsive behaviors) from age 2-6 in the ASD group, and from age 2-4 in the DD group, even after controlling for intellectual ability, social-affective symptoms, and anxiety. Trajectories of stereotyped/restricted behaviors were unrelated to sleep problems. Sleep problems were associated with trajectories of higher-order (but not lower-order) RRBs in a transdiagnostic sample.
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Trastornos del Neurodesarrollo/psicología , Padres/psicología , Trastornos del Sueño-Vigilia/psicología , Trastorno de Movimiento Estereotipado/psicología , Ansiedad/diagnóstico , Ansiedad/epidemiología , Ansiedad/psicología , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Trastorno del Espectro Autista/psicología , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Trastornos del Neurodesarrollo/diagnóstico , Trastornos del Neurodesarrollo/epidemiología , Trastornos del Sueño-Vigilia/diagnóstico , Trastornos del Sueño-Vigilia/epidemiología , Trastorno de Movimiento Estereotipado/diagnóstico , Trastorno de Movimiento Estereotipado/epidemiologíaRESUMEN
OBJECTIVE: Sleep patterns in children with autism spectrum disorder (ASD) appear to diverge from typical development in the second or third year of life. Little is known, however, about the occurrence of sleep problems in infants who later develop ASD and possible effects on early brain development. In a longitudinal neuroimaging study of infants at familial high or low risk for ASD, parent-reported sleep onset problems were examined in relation to subcortical brain volumes in the first 2 years of life. METHODS: A total of 432 infants were included across three study groups: infants at high risk who developed ASD (N=71), infants at high risk who did not develop ASD (N=234), and infants at low risk (N=127). Sleep onset problem scores (derived from an infant temperament measure) were evaluated in relation to longitudinal high-resolution T1 and T2 structural imaging data acquired at 6, 12, and 24 months of age. RESULTS: Sleep onset problems were more common at 6-12 months among infants who later developed ASD. Infant sleep onset problems were related to hippocampal volume trajectories from 6 to 24 months only for infants at high risk who developed ASD. Brain-sleep relationships were specific to the hippocampus; no significant relationships were found with volume trajectories of other subcortical structures examined (the amygdala, caudate, globus pallidus, putamen, and thalamus). CONCLUSIONS: These findings provide initial evidence that sleep onset problems in the first year of life precede ASD diagnosis and are associated with altered neurodevelopmental trajectories in infants at high familial risk who go on to develop ASD. If replicated, these findings could provide new insights into a potential role of sleep difficulties in the development of ASD.
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Trastorno del Espectro Autista/epidemiología , Hipotálamo/diagnóstico por imagen , Trastornos del Inicio y del Mantenimiento del Sueño/epidemiología , Amígdala del Cerebelo/diagnóstico por imagen , Amígdala del Cerebelo/patología , Trastorno del Espectro Autista/diagnóstico por imagen , Encéfalo/diagnóstico por imagen , Encéfalo/patología , Núcleo Caudado/diagnóstico por imagen , Núcleo Caudado/patología , Preescolar , Femenino , Globo Pálido/diagnóstico por imagen , Globo Pálido/patología , Humanos , Hipotálamo/patología , Lactante , Imagen por Resonancia Magnética , Masculino , Tamaño de los Órganos , Putamen/diagnóstico por imagen , Putamen/patología , Trastornos del Inicio y del Mantenimiento del Sueño/diagnóstico por imagen , Trastornos del Inicio y del Mantenimiento del Sueño/fisiopatología , Latencia del Sueño , Tálamo/diagnóstico por imagen , Tálamo/patologíaRESUMEN
This review describes the effects of intervention for young children with autism spectrum disorder (ASD) on parents. Like all children, children with ASD bring both negative and positive experiences for parents and families-from increased resource needs, to higher levels of parenting-related stress, to positive personal growth for family members. It is increasingly recognized that, although children with ASD are the primary targets of early ASD intervention, ASD intervention also impacts parents. From the time emerging developmental concerns begin to be identified, through the process of obtaining a diagnosis and initiating services, parents play a central role in addressing the needs of young children with ASD, including implementing and supporting early intervention. Parents experience the impact of intervention directly, through interaction with providers within the health care and educational systems. Parents also experience indirect impacts of ASD intervention due to accelerated developmental progress of children who are benefitting from services and when children make slower progress than expected or have challenging behaviors. Parental stress and psychological well-being are legitimate targets of intervention and compelling research objectives, needing no additional justification. However, parents are also the major contributors to family adaptive functioning-the activities families employ to support positive outcomes for children with ASD (e.g., family-orchestrated child experiences, parent-child interaction, child health and safety functions; Guralnick, 1997). A parent's ability to carry out adaptive functions is, in part, related to their levels of stress and psychological well-being. Thus, there is a transactional process in which parents are both impacted by and have an impact on ASD interventions for their child. Evaluating the effect of ASD intervention on parents is needed to develop new strategies for helping parents and children with ASD reach their full potential. This review will provide an overview of research on the impact of early ASD intervention on parents. Evidence regarding the impact of three types of intervention (i.e., early intensive behavioral intervention, parent-implemented intervention, and programs directly targeting parent stress) on parent well-being and family adaptive functioning will be reviewed. Potential moderators of the impact of ASD intervention on parents and family adaptive functioning will be discussed. We conclude that research on the impact of ASD intervention on parents of young children with ASD is a promising avenue for improving the lives of children with ASD and their families.
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Auto-biological beliefs-beliefs about one's own biology-are an understudied component of personal identity. Research participants who are led to believe they are biologically vulnerable to affective disorders report more symptoms and less ability to control their mood; however, little is known about the impact of self-originating beliefs about risk for psychopathology, and whether such beliefs correspond to empirically derived estimates of actual vulnerability. Participants in a neuroimaging study (n = 1256) completed self-report measures of affective symptoms, perceived stress, and neuroticism, and an emotional face processing task in the scanner designed to elicit threat responses from the amygdala. A subsample (n = 63) additionally rated their own perceived neural response to threat (i.e., amygdala activity) compared to peers. Self-ratings of neural threat response were uncorrelated with actual threat-related amygdala activity measured via BOLD fMRI. However, self-ratings predicted subjective distress across a variety of self-report measures. In contrast, in the full sample, threat-related amygdala activity was uncorrelated with self-report measures of affective distress. These findings suggest that beliefs about one's own biological threat response-while unrelated to measured neural activation-may be informative indicators of psychological functioning.