DOI: 10.3886/icpsr38164
title: MyCode Participants' Attitudes Towards Sensitive Research, Pennsylvania, New Jersey, 2017-2018
title: Archival Version

description: This collection includes 10 focus group transcripts conducted with participants in Geisinger Health System's MyCode Community Health Initiative, an unselected biobank. Geisinger is a large, integrated health system in central and northeast Pennsylvania. Focus groups were conducted at clinics throughout the system's catchment area. Focus group participants were asked to discuss their views of the appropriateness of using their clinical and genomic data to study several phenotypes, including social and behavioral phenotypes.
description: The purpose of this study was to examine participants' views about the appropriateness of 31 different topics of MyCode research.
description: The focus group began by asking participants general questions about themselves and their decision to participate in MyCode. Participants were then asked to complete some exercises that were designed to get them to think about 31 different MyCode research topics. In the exercises participants were asked which topics would be appropriate, inappropriate, or uncertain of appropriateness for research study. After participants' initial opinions on MyCode research were captured, the research team provided an educational session about genetics and human health. The participants were then asked to repeat the exercise about their opinions on the MyCode research, and any changes to their views on the appropriateness of the topics were captured. The 31 MyCode research topics included studying genetics with: heart disease; skin disease; kidney disease; cancer; dementia (like Alzheimer's); sexually transmitted disease (like herpes, HIV/AIDS, or human papillomavirus (HPV)); schizophrenia (a serious mental illness); anxiety; depression; alcoholism; drug addiction; eating disorders (like anorexia, bulimia, and compulsive overeating); sexual orientation/preference (i.e., whether someone is gay, straight, bisexual, or none of these); intelligence; education (years of schooling completed); race/ethnicity; ancestry/human origins; toxic exposures (like pesticides, mercury, lead, or solvents found in glues and paints); financial/economic stability; physical disability (like blindness, deafness, paralysis, or cerebral palsy); mental disability (like learning disabilities, Autism, obsessive-compulsive disorder (OCD)); height; weight; happiness/subjective well-being; memory; attention; fertility (number/timing of children); miscarriage; optimism; religious belief; physical activity/exercise.
description: Datasets: DS1: MyCode Participants' Attitudes Towards Sensitive Research, Pennsylvania, New Jersey, 2017-2018
description: Participants in Geisinger Health System's MyCode Community Health Initiative.
description: face-to-face interviewThis study is part of Washington University in St. Louis (WUSTL) Qualitative Data Sharing (QDS) project.ICPSR has zipped the 10 focus group transcripts into a qualitative data package. This package is available for restricted download. Please refer to the ICPSR README documentation for more information.