Cancer susceptibility testing is likely to become routine in medical practice, despite many limitations and unanswered questions. These uncertainties greatly complicate the process of informed consent, creating an excellent opportunity to reconsider exactly how it should be conducted. Research with women's reactions to the availability of genetic susceptibility testing for breast cancer dramatically underscores that informed consent ought to be highly individualized, taking care to discern what patients believe about the disease and its causes and what role they want their physician to play.
As an initial part of a project to develop a model informed consent process for BRCA1 testing, we conducted a series of focus groups. At the groups, women initially expressed great interest in testing, but their interest diminished after learning more. If offered testing, women would most want to learn about test accuracy, practical details of testing, and management options if the result was positive. Perceived benefits of testing included gaining information leading to risk reduction, relief of uncertainty, more responsible parenting, and assisting in research. Perceived risks included the discomfort and cost of the testing process itself, and anxiety after a positive result. The risk of possible insurance discrimination was rarely mentioned spontaneously. Many women would want their providers to make recommendations, rather than be nondirective about testing. We observed that women vary greatly in their informational and counseling needs, and suggest that the informed consent process should be individualized, taking into account a woman's perception and her preferences for how testing decisions should be made.
Procedural memory encompasses several phenomena, including motor and perceptual learning, cognitive rule learning and priming. These subclasses are differentially affected by differing neuropathologies, suggesting their functional independence and reliance upon different neural substrates. To test this hypothesis, performance on a maze learning task was compared in 15 Huntington's disease (HD) patients and 15 normal controls (NC) to assess specific route learning, cognitive skill learning and the effects of route predictability on performance. Results revealed that the HD group: (1) showed normal learning curves for a specific maze route; (2) are deficient in generalizing the cognitive skills across mazes; and, (3) fail to improve performance on a maze with a predictable route relative to mazes with unpredictable routes. These results are interpreted as supporting the independence of procedural memory subclasses. The basal ganglia are suggested as important structures in mediating the ability to generalize skills and appreciate patterned organization in to-be-acted-upon stimuli.
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