I am collecting anecdotal information from people with personal experience with PKU for my Senior Honors Thesis in American Studies at Tufts University. My thesis An Examination of Eugenics in Genetic Medicine: A Case Study of PKU examines PKU patients’ access and participation in genetic medicine. I wish to include personal stories to give my thesis a more personal, human perspective beyond my institutional analysis of genetic medicine.
Would anyone in this community at RareShare be willing to participate in this study and share your personal experience? Interviews will take approximately one hour and be conducted by phone. They will be conducted in private and information will remain confidential. If you are interested learning further information about participating please contact me by email at Jamie.Love-Nichols@tufts.edu.