Research Participants’ Preferences for Hypothetical Secondary Results from Genomic Research

Secondary or incidental results can be identified in genomic research that increasingly uses whole exome/genome sequencing. Understanding research participants’ preferences for secondary results and what influences these decisions is important for patient education, counseling, and consent, and for the development of policies regarding return of secondary results. Two hundred nineteen research participants enrolled in genomic studies were surveyed regarding hypothetical preferences for specific types of secondary results, and these preferences were correlated with demographic information and psychosocial data. The majority of research participants (73%) indicated a preference to learn about all results offered, with no clear pattern regarding which results were not desired by the remaining participants. Participants who reported greater interest in genetic privacy were less likely to indicate a preference to learn all results, as were individuals who self-identified as Jewish. Although most research participants preferred to receive all secondary results offered, a significant subset preferred to exclude some results, suggesting that an all-or-none policy would not be ideal for all participants. The correlations between preferences to receive secondary results, religious identification, and privacy concerns demonstrate the need for culturally sensitive counseling and educational materials accessible to all education levels to allow participants to make the best choices for themselves.     

A maximum likelihood procedure for the analysis of group and individual data in aphasia research.

The limitations inherent in group versus case studies appear to lie in a complementary distribution, underscoring the importance of combining both strategies within a single research program. However, this compromise approach requires analytic tools that permit us to combine and evaluate individual and group data in a common format. Maximum likelihood estimation (MLE) belongs to a family of procedures for determining goodness of fit. MLE can be used in conjunction with a linear or nonlinear model of the way that sources of information combine to determine a given behavioral outcome; such models can be used to estimate the distance between two groups, the degree to which an individual case deviates from a given empirically or theoretically defined group profile, and the degree to which one individual case resembles another. We offer a demonstration of how MLE can be used to evaluate group and individual profiles, in a cross-linguistic study of sentence comprehension in nonfluent aphasic speakers of English, Italian, and German. This includes a demonstration in which the MLE models for each language are "lesioned" to simulate several competing accounts of receptive agrammatism.     

Multiple personality disorder and the choice of self: Change factors in a brief therapy case

A person who identified herself as having a multiple personality disorder made remarkable changes after seven psychotherapeutic sessions and two batteries of tests, one on the alter. The case raises such problematic issues as the diagnosis of MPD, the unitary versus discrete theories and treatment of it, change factors in brief psychotherapy and for all psychotherapy, and the use of psychological tests.     

The refractory headache patient--II. High medication consumption (analgesic rebound) headache

'Analgesic rebound headache' is identified by habituation of an individual to pain reducing medication, the exacerbation of headache pain a few hours after medication consumption and a marked increase in headache frequency and intensity for several weeks after medication is discontinued. We describe three studies undertaken to clarify the existence and characteristics of this proposed headache syndrome. In Study 1 we compared a group of headache sufferers who consume large amounts of analgesic medications to headache sufferers who did not consume excessive analgesics. It was found that the two groups did not differ on age, duration of headache problem or gender. However, the groups did differ on subjective headache pain (with the high medicators experiencing more headache pain than low medicators) and diagnosis (with high medicators being more likely to have a muscle contraction component to their headaches). In an analysis of drug use within the high medication group, it was found that 91% were taking some kind of analgesic and that a majority (84%) were taking more than one type of medication. In Study 2 we found that the group of high medicators were not as successful in reducing headache activity as a result of a self-regulatory behavioral treatment as the matched controls. Furthermore, there was a direct relationship between reduction and treatment success in the high medication consuming population. Lastly, in Study 3 we examined the current psychological functioning of the two groups; no differences were found between the two groups indicating the lack of 'addictive' personality characteristics as an explanation for the high medicating population. These findings all support the existence of a sub-population of headache sufferers who consume excessive amounts of analgesic medication and who are relatively refractory to behavioral treatment.