Genetics and Genomics Commons^™

Evaluating The Social Informational Needs Of Emerging Adults With Genetic Conditions, Courtney Whitmore

Theses and Dissertations

Purpose: This study evaluated the healthcare provider’s role during the social development of emerging adults with a genetic condition. The study also identified the type of information and ways that these adolescents hope to receive information on the potential side effects or complications from engaging in risk taking behaviors and lifestyle choices.

Methods: Participants included both males and females aged 18-26 with achondroplasia, sickle cell disease, cystic fibrosis, or Marfan syndrome. Respondents were recruited to complete an anonymous online questionnaire via social media support groups or email notification.

Results: There were 103 total respondents that completed the questionnaire and met …

Amish Perspectives Of The Genetic Counseling Process, Brianna Teapole

Theses and Dissertations

The Amish are a population with a high concentration of genetic disorders who have informed our understanding of several genetic conditions. This culturally unique group has special need for genetic services. While clinics have been established to care for Amish individuals, such as the Community Health Clinic in Indiana, little research has been done on Amish perspectives of these services, specifically genetic counseling. Amish individuals who received genetic counseling from the Community Health Clinic were sent recruitment letters and a questionnaire via mail. The questionnaire consisted of demographic questions, a 7-item adapted Genetic Counseling Satisfaction Scale (GCSS), and open-response questions. …