Recent rapid developments in genetic medicine are creating the expectation that genetic assessments will soon become integral to routine health care. Yet while such practices stand to have far-ranging clinical implications, little empirical attention has been devoted to understanding the processes or consequences of incorporating genetic testing into routine diagnosis and management procedures. The proposed research will combine qualitative and quantitative methods to examine factors that shape neurologists' views about and use of genetic information in their clinical practice, and the consequences of their doing so.
Our specific aims are to: 1) Examine how or if genetic information associated with adult-onset movement disorders is communicated during routine clinical care. 2) Compare clinical encounters where genetics is incorporated into the diagnostic process with those where it is not. 3) Investigate how physicians, patients with symptoms of adult-onset movement disorders, and their families conceptualize and use genetic information. 4) Explore the degree to which variation in practice setting acts to constrain or promote neurologists' offers of genetic testing to such patients and their families. The practice of neurology is an ideal setting in which to explore the processes by which genetic information is incorporated into clinical routines. While standard genetic tests to diagnose specific neurological diseases are becoming increasingly available, it is not yet known when and how these tests are offered to particular patients. In addition, the nature and consequences of this genetic knowledge introduces unique concerns into the standard clinical relationship between neurologists, patients, and families (i.e., psychological distress of learning about a hereditary disease, occupational and/or insurance discrimination, and disclosure of familial risk). We will examine why, how, when, and by whom these issues are communicated during medical interactions, and how specific genetic information affects patients' and family members' understandings about and management of symptoms.
