This pilot project explores the values, attitudes and beliefs of affected adults and parents of affected youths about genetic testing for obesity. Obesity is an extensive problem in health care, with a rapid rise in prevalence among both adults and children during the last decade. This highly stigmatizing condition has proved especially difficult to treat in adults using behavioral approaches. Recent evidence suggests it may be genetically encoded, and in the future, genetic tests may be useful for identifying appropriate pharmacological treatment and/or for preventive screening. Diet and activity habits that lead to obesity are often formed during adolescence or earlier. Therefore we will ask adults, particularly young adults, to reflect on what their valuations would have been at a younger age, as well as parents of obese children to discuss how best to explore obesity genetic testing in a sensitive, relevant way. Goals are to identify constructs for a future model of factors that increase likelihood to pursue obesity genetic testing, and to frame issues of informed consent. This project brings together the fields of medicine, ethics, genetics, and social science. The methodology is a series of 11 focus groups of affected adults and parents of affected minor children, supplemented by their preliminary and exit survey data. End products will include (1) a draft survey for use in larger, quantitative studies; (2) testable hypotheses for future studies; and (3) a preliminary framework of information for drafting future policy guidelines for informed consent, including ways consent may vary depending on recipient's age, gender, ethnicity and social class. These characteristics may indicate differing psychosocial meanings of obesity. This pilot project represents a first step in promoting use of genetic information about obesity in a culturally sensitive way, and ensuring that behavioral genetic research is conducted in an ethical manner. We anticipate that it will provide the framework for larger proposals using quantitative methods targeted to obesity genetic testing when the time is appropriate. In turn, we expect that these projects will lead to studies of interventions combining knowledge of individual genetic and environmental factors to improve health of patients affected by or at risk for obesity.
| Segal, Mary E; Polansky, Marcia; Sankar, Pamela (2007) Adults'values and attitudes about genetic testing for obesity risk in children. Int J Pediatr Obes 2:11-21 |
| Segal, Mary E; Polansky, Marcia; Sankar, Pamela (2007) Predictors of uptake of obesity genetic testing among affected adults. Hum Genet 120:641-52 |
| Hogarth, Penelope; Kayson, Elise; Kieburtz, Karl et al. (2005) Interrater agreement in the assessment of motor manifestations of Huntington's disease. Mov Disord 20:293-7 |
| Segal, Mary E; Sankar, Pamela; Reed, Danielle R (2004) Research issues in genetic testing of adolescents for obesity. Nutr Rev 62:307-20 |
