Over the past year, the Genetics Services Research Unit has completed several investigations in genetic counseling related research. One project explored the impact of living with bipolar disease on affected individuals and unaffected siblings. Results suggest significant burden of the condition on families with concern for younger family members. Research participants expressed a need for genetic counseling services but skepticism towards (hypothetical) predictive genetic testing. A larger follow-up study is planned. ? A second project explored the potential of an innovative photography and video interview intervention on the lives of children and adults affected with craniofacial disorders. Findings from a pilot study of 35 children and adults suggest that participants experienced social stigmatization, primary staring and teasing from peers. Yet most participants had adapted well to living with their condition and perceived differences. Participating in the professional photography session and video interview provided an opportunity for them to help others by serving as a role model to others similarly affected. Coping through helping others may be an effective strategy for managing the stress that accompanies stigmatization. Health care providers, including genetic counselors, can suggest ways that affected individuals can participate in community efforts to help others, including being a peer leader. ? A third study into the prevalence of ambivalence among 154 women facing decisions about invasive prenatal testing found that about a third of women have significant levels of ambivalence. Their ambivalence towards prenatal testing modifies the predictive relationship between attitudes and intentions to undergo testing. These findings pave the way for a proof of principle study on two interventions aimed at reducing ambivalence, thereby enhancing informed choice about prenatal testing. ? Additionally, another study explored the role of affected individuals in teaching genetics. Interviews were conducted with thirty people affected with a number of different conditions that result in visible differences. Participants relayed experiences being asked to participate in teaching physical examinations of pertinent findings to trainees, in teaching conferences and even in published manuscripts. Most felt positive about being asked to participate it such activities as an opportunity to teach others about their condition and perhaps, help others who may be affected. Participants felt strongly about how health care providers ask their permission but were not resistant to opportunities to teach. ? A final survey study of 220 women explored the impact of a history of infertility on decisions about invasive prenatal testing. Findings suggest that infertility had a direct effect on both the decision to undergo testing and on decisional conflict. Those who had been infertile were less likely to choose to undergo testing and had more conflict about their decision. These results have implications for how invasive testing is offered to women with a history of infertility and for genetic counseling services aimed at helping women make informed choices about testing with minimal decisional regret.
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