Diverse Perceptions of the Informed Consent Process: Implications for the Recruitment and Participation of Diverse Communities in the National Children’s Study

We examined the experiences, perceptions, and values that are brought to bear when individuals from different ethnic and cultural backgrounds consider participating in health research. Fifty-three women from Latino, Asian American, Middle Eastern, or Non-Latino, White backgrounds participated in seven English or Spanish focus groups facilitated by trained investigators using a standard protocol. Investigators described the National Children’s Study (NCS) and then asked questions to elicit potential concerns, expectations, and informational needs. Group sessions were audio-recorded, transcribed verbatim, and analyzed using qualitative thematic methods. A major theme that emerged during focus groups was participant self-identification as a member of a cultural group or community when raising issues that would influence their decision to participate in research. A related theme was the belief by some that communities may differ in the ease of participation in the NCS. Identified themes related to the informed consent process included perceived risks, anticipated burden, perceived benefits, informational needs, and decision-making strategies. Although themes were shared across groups, there were cultural differences within themes. Findings indicated that individuals from diverse backgrounds may have different perspectives on and expectations for the research process. To effectively recruit representative samples, it will be important to address a range of issues relevant for informed consent and to consider the impact of participation on both individuals and communities.     

Personhood: Elusive But Not Illusory

Bioethics as a field has been fortunate that its values and concerns have mirrored the values and concerns of society. In light of the September 11th attacks, it is possible that we are witnessing the beginning of a transition in American culture, one fraught with implications for bioethics. The emphasis on autonomy and individual rights may come to be tempered by greater concern over the collective good. Increased emphasis on solidarity over autonomy could greatly alter public response to research abuses aimed at defense from bioterrorism, to privacy of genetic information, and to control of private medical resources to protect the public health.     

Focusing on Educational Outcomes

National education goals, content standards, and national tests are the hot topics of the day in educational reform. Special services personnel eventually will be faced with these issues, and can either be part of the discussion from the beginning, or wait and have to deal with someone else's decisions. In this article, we highlight some recent national and state educational reform activities and their probable implications for students with disabilities. We explain in brief the impetus behind the thrust toward an outcomesbased approach to education, and summarize the response of the National Center on Educational Outcomes for Students with Disabilities to this push. Possible ways in which special service providers can act to influence the focus on outcomes are described.     

Children of Probationers in the Child Welfare System and Their Families

This study describes changes over a 36-month period in the lives of children of probationers who were subjects of reports of maltreatment. Data on a nationally representative sample of reported victims of maltreatment were used to examine probationer-parents’ contact with the criminal justice system, and concurrent changes in their children’s households, risk exposure, and emotional and behavioral problems. Results show that 36 months after coming in contact with the child welfare system, about 40% of probationer’s children no longer lived with their probationer-parents. During the same period, children’s exposure to risk (i.e., parental substance abuse, mental illness, and domestic violence) dropped markedly; however, there was an upward trend in the prevalence of child emotional and behavioral problems. These problems ultimately declined among very young children, but persisted among elementary school age children. Further prospective studies are needed to better understand the confluence of factors affecting the outcomes of probationers’ children.     

Religiously Affiliated Continuum of Care Retirement Communities

SUMMARY

The paper introduces an action research initiative called Spirited Scotland, an embryonic movement seeking to restore spirituality to an appropriate place in health and social care. It locates the initiative in the changing social and spiritual circumstances of post-industrial Scotland and identifies some challenges it faces associated with the prevailing understandings of health, becoming ill, and successful ageing. The paper also considers some policy and practice challenges raised by Spirited Scotland, in terms both of content and process.     

Three- and four-year-olds spontaneously use others' past performance to guide their learning

A wealth of human knowledge is acquired by attending to information provided by other people – but some people are more credible sources than others. In two experiments, we explored whether young children spontaneously keep track of an individual’s history of being accurate or inaccurate and use this information to facilitate subsequent learning. We found that 3- and 4-year-olds favor a previously accurate individual when learning new words and learning new object functions and applied the principle of mutual exclusivity to the newly learned words but not the newly learned functions. These findings expand upon previous research in a number of ways, most importantly by showing that (a) children spontaneously keep track of an individual’s history and use it to guide subsequent learning without any prompting, and (b) children’s sensitivity to others’ prior accuracy is not specific to the domain of language.     

Should “multiple imputations” be treated as “multiple indicators”?

Rubin's multiple imputation approach to missing data creates synthetic data sets, in which each missing variable is replaced by a draw from its predictive distribution, conditional on the observed data. By construction, analyses of such filled-in data sets as if the imputations were true values have the correct expectations for population parameters. In a recent paper, Mislevy showed how this approach can be applied to estimate the distributions of latent variables from complex samples. Multiple imputations for a latent variable bear a surface similarity to classical multiple indicators of a latent variable, as might be addressed in structural equation modelling or hierarchical modelling of successive stages of random sampling. This note demonstrates with a simple example why analyzing multiple imputations as if they were multiple indicators does not generally yield correct results; they must instead be analyzed by means concordant with their construction.I am grateful to Frank Jenkins, John Mazzeo, Kentaro Yamamoto, and Rebecca Zwick for comments on earlier versions of this paper.     

Know-how and concept possession

We begin with a puzzle: why do some know-how attributions entail ability attributions while others do not? After rejecting the tempting response that know-how attributions are ambiguous, we argue that a satisfactory answer to the puzzle must acknowledge the connection between know-how and concept possession (specifically, reasonable conceptual mastery, or understanding). This connection appears at first to be grounded solely in the cognitive nature of certain activities. However, we show that, contra anti-intellectualists, the connection between know-how and concept possession can be generalized via reflection on the cognitive nature of intentional action and the potential of certain misunderstandings to undermine know-how even when the corresponding abilities and associated propositional knowledge are in place. Such considerations make explicit the intimate relation between know-how and understanding, motivating a general intellectualist analysis of the former in terms of the latter.