MyCode Participants' Attitudes Towards Sensitive Research, Pennsylvania, New Jersey, 2017-2018 (ICPSR 38164)

Version Date: Aug 31, 2021

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Principal Investigator(s):
Michelle N. Meyer, Geisinger Health System

Series:

https://doi.org/10.3886/ICPSR38164.v1

Version V1

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Summary

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.

Citation

Meyer, Michelle N. MyCode Participants’ Attitudes Towards Sensitive Research, Pennsylvania, New Jersey, 2017-2018. Inter-university Consortium for Political and Social Research [distributor], 2021-08-31. https://doi.org/10.3886/ICPSR38164.v1

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Subject Terms

Geographic Coverage

Restrictions

This data collection may not be used for any purpose other than statistical reporting and analysis. Use of these data to learn the identity of any person or establishment is prohibited. To protect respondent privacy, this data collection is restricted from general dissemination. To obtain this file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2017 -- 2018

Date of Collection

2017-09-18 -- 2018-04-12

Data Collection Notes

  1. This study is part of Washington University in St. Louis (WUSTL) Qualitative Data Sharing (QDS) project.

  2. 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.

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Study Purpose

The purpose of this study was to examine participants' views about the appropriateness of 31 different topics of MyCode research.

Study Design

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.

Time Method

Cross-sectional

Universe

Participants in Geisinger Health System's MyCode Community Health Initiative

Unit(s) of Observation

Individual

Data Type(s)

Mode of Data Collection

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Original Release Date

2021-08-31

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Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

  • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.

  • One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.