ELSI priorities for brain imaging

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier.     

Genetic Testing of Children for Predisposition to Mood Disorders: Anticipating the Clinical Issues

Large-scale sequencing information may provide a basis for genetic tests for predisposition to common disorders. In this study, participants in the Coriell Personalized Medicine Collaborative (N?=?53) with a personal and/or family history of Major Depressive Disorder or Bipolar Disorder were interviewed based on the Health Belief Model around hypothetical intention to test one’s children for probability of developing a mood disorder. Most participants (87 %) were interested in a hypothetical test for children that had high (“90 %”) positive predictive value, while 51 % of participants remained interested in a modestly predictive test (“20 %”). Interest was driven by beliefs about effects of test results on parenting behaviors and on discrimination. Most participants favored testing before adolescence (64 %), and were reluctant to share results with asymptomatic children before adulthood. Participants anticipated both positive and negative effects of testing on parental treatment and on children’s self-esteem. Further investigation will determine whether these findings will generalize to other complex disorders for which early intervention is possible but not clearly demonstrated to improve outcomes. More information is also needed about the effects of childhood genetic testing and sharing of results on parent–child relationships, and about the role of the child in the decision-making process.     

Demographic and Experiential Correlates of Public Attitudes Towards Cell-Free Fetal DNA Screening

This study seeks to inform clinical application of cell-free fetal DNA (cffDNA) screening as a novel method for prenatal trisomy detection by investigating public attitudes towards this technology and demographic and experiential characteristics related to these attitudes. Two versions of a 25-item survey assessing interest in cffDNA and existing first-trimester combined screening for either trisomy 13 and 18 or trisomy 21 were distributed among 3,164 members of the United States public. Logistic regression was performed to determine variables predictive of interest in screening options. Approximately 47 % of respondents expressed an interest in cffDNA screening for trisomy 13, 18, and 21, with a majority interested in cffDNA screening as a stand-alone technique. A significantly greater percent would consider termination of pregnancy following a diagnosis of trisomy 13 or 18 (52 %) over one of trisomy 21 (44 %). Willingness to consider abortion of an affected pregnancy was the strongest correlate to interest in both cffDNA and first-trimester combined screening, although markedly more respondents expressed an interest in some form of screening (69 % and 71 %, respectively) than would consider termination. Greater educational attainment, higher income, and insurance coverage predicted interest in cffDNA screening; stronger religious identification also corresponded to decreased interest. Prior experience with disability and genetic testing was associated with increased interest in cffDNA screening. Several of these factors, in addition to advanced age and Asian race, were, in turn, predictive of respondents’ increased willingness to consider post-diagnosis termination of pregnancy. In conclusion, divergent attitudes towards cffDNA screening—and prenatal options more generally – appear correlated with individual socioeconomic and religious backgrounds and experiences with disability and genetic testing. Clinical implementation and counseling for novel prenatal technologies should take these diverse stakeholder values into consideration.     

Predicting behavioral outcomes with two psychological assessment methods in an outpatient pain management program

Abstract

In research with pain patients, the determination of psychological variables that can predict physiological gains would be helpful for practitioners doing assessments on pain patients. The present study used the Millon Behavioral Health Inventory (MBHI) and the Minnesota Multiphasic Personality Inventory (MMPI) to assess whether gains in time sitting, time standing, number of stairs climbed, time on a treadmill, treadmill speed, grip strength in both hands, and a composite score of these variables could be successfully predicted for patients at a 20-day outpatient multidisciplinary pain rehabilitation program. Discriminant analyses demonstrated that both the MBHI and the MMPI were successful in this prediction. Advantages for using the two instruments singly and together in assessment procedures and suggestions for future research are made.     

Strangers at the benchside: research ethics consultation

Institutional ethics consultation services for biomedical scientists have begun to proliferate, especially for clinical researchers. We discuss several models of ethics consultation and describe a team-based approach used at Stanford University in the context of these models. As research ethics consultation services expand, there are many unresolved questions that need to be addressed, including what the scope, composition, and purpose of such services should be, whether core competencies for consultants can and should be defined, and how conflicts of interest should be mitigated. We make preliminary recommendations for the structure and process of research ethics consultation, based on our initial experiences in a pilot program.     

Problem solving skills in young yellow-crowned parakeets (Cyanoramphus auriceps)

Despite the long divergent evolutionary history of birds and mammals, early avian and primate cognitive development have many convergent features. Some of these features were investigated with a series of tasks designed to assess human infant development. The tasks were presented to young parakeets to assess their means-end problem solving abilities. Examples of these early skills are: attaining and playing with objects, retrieving rewards through use of a stick or rake, or by pulling in rewards on supports or on the ends of strings. Twelve such tasks were presented to 11 young yellow-crowned parakeets (Cyanoramphus auriceps) to investigate their natural abilities; there was no attempt to train them to do those tasks that they did not spontaneously perform. Six of the birds were parent-raised and five were hand-raised. The birds completed 9 of the 12 tasks, demonstrating all the Piagetian sensorimotor circular reactions, but they failed to hand-watch ("claw-watch"), to stack objects, or to fill a container. Their ordinality on the tasks differed from that of human infants in that locomotion to obtain objects occurred earlier in the avian sequence of development and the mid-level tasks were performed by the two groups of avian subjects in a mixed order perhaps indicating that these abilities may not emerge in any particular order for these birds as they supposedly do for human infants. The hand-raised group needed fewer sessions to complete these means-end tasks. Electronic Publication     

An Emotion Regulation Treatment for Young People With Complex Substance Use and Mental Health Issues: A Case-Series Analysis

Individuals accessing treatment within the youth alcohol and other drug (AoD) sector represent a highly vulnerable population who present with complex patterns of substance use and mental health comorbidity. Current treatments often fail to address this complexity. Emotion regulation (ER) has been identified as a promising transdiagnostic treatment target for this population of young people. The current study aimed to investigate the acceptability and feasibility of an adjunct ER intervention, ERIC (Emotion Regulation and Impulse Control) in young people receiving AoD treatment at a residential rehabilitation service. A mixed methods case series design was utilized. Ten participants aged between 16–20 years old completed 4–6 sessions of ERIC as an adjunct to their existing residential treatment. Participants undertook a post intervention feedback session and completed a number of self-report measures of ER, depression and anxiety at baseline and 2 weeks after receiving ERIC. Qualitative feedback from young people following the delivery of ERIC was positive, and suggested that ERIC was a viable and useful intervention. Participants reported that the components of ERIC, which involved metaphors and experiential exercises, were particularly beneficial and memorable. Pre-post measures indicated that 60% of the young people had both reliable and clinically significant reductions in overall emotion dysregulation, while reliable and clinically significant reductions in depression and anxiety were observed in 50% and 60% of participants respectively. Results support the acceptability of ERIC for this cohort of young people with complex substance use and mental health needs. Furthermore, these findings support the viability of delivering flexible and adjunctive ER treatments to young people seeking AoD treatment.     

Early emotional development in infants and toddlers: Perspectives of Early Head Start staff and parents

As part of a curriculum‐development project, focus groups were implemented with Early Head Start staff and with parents of infants and toddlers enrolled in Early Head Start. Focus groups were designed to identify staff and parent beliefs about early emotional development. Three major themes were identified that crossed the staff and parent focus groups: (a) Infants' and toddlers' abilities to have emotions and to be aware of others' emotions; (b) roles of parents as advocates, teachers, and disciplinarians; and (c) parental reflectivity about their own experiences as influences on their parenting. The findings suggest that parents participating in Early Head Start have some knowledge about basic emotions and the developmental nature of emotions, but may easily misinterpret emotional displays only as attempts at manipulation rather than as valid expressions of feelings; expectations for gender‐appropriate emotional expressiveness begin early; more empowered parents may view themselves as role models and teachers for their children; and more reflective parents are better prepared to engage in the sensitive interactions needed to guide young children's growing awareness of their own and others' emotions. Implications for parenting education and program planning utilizing an infant mental health perspective are discussed.     

ELSI Priorities for Brain Imaging

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier.