Cultural Differences and the Understanding of Informed Consent May 4, 2015 A Worcester Polytechnic Institute Interactive Qualifying Project Submitted to the Faculty of WORCESTER POLYTECHNIC INSTITUTE In partial fulfillment of the requirements for the Degree of Bachelor of Science Authors Mario Alvarado, Chemistry 2016 Nathan A. Ferron, Biology/Biotechnology, 2016 Nour Krayem, Biomedical Engineering, 2016 Project Advisors Professor Ruth Smith, Ph.D. Professor Richard Vaz, Ph.D. This report represents the work of WPI undergraduate students submitted to the faculty as evidence of completion of a degree requirement. WPI routinely publishes these reports on its website without editorial or peer review. For more information about the projects program at WPI, please see http://www.wpi.edu/academics/ugradstudies/project-learning.html Abstract This project examines the delivery of informed consent in the medical field across cultures, with specific attention to potential barriers from linguistic differences in Worcester, Massachusetts. On the basis of qualitative interviews with medical professionals such as interpreters, doctors, and others, we investigated the accommodations and approaches to addressing such differences using interpretative analysis approaches. Our results emphasize distinctions in views of consent with patients of cultural difference, the significance of interpreters within the consent process, and the importance of trust within doctor-patient relationships. i Acknowledgements We would like to acknowledge our motivating project advisors and Professors, Ruth Smith and Richard Vaz. Without their help and encouragement, this research would not be where it is today. We would also like to acknowledge those who were willing to be interviewed for our research as well as their affiliated institutions. Their valuable contributions of time and attention have made our research into the medical community possible. ii Authorship Nathan Ferron was involved in the acquisition of interview opportunities with several key interviewees, secretarial duties and note-taking during meetings and interviews, and much of the later-stage editing process. Mario Alvarado was involved in the finding of interview opportunities via phone call with several interviewees, coordination of the trips to introduce ourselves in person to interviewees and institutions, acted as interview facilitator, and edited the report throughout. Nour Krayem was involved in reaching out to people to interview through phone calls and live visits, supporting the interviews with follow-up questions, and edited the report. All report sections were discussed and written as a collaboration and edited as a group. Each section had one or two primary authors, and the non-primary authors focused on editing. Primary authors are listed below in Table 1. Table 1: Report Authorship by Section Section of Report Primary Author Abstract Nathan Ferron Executive Summary Nathan Ferron and Mario Alvarado 1. Introduction Nathan Ferron 2.1.1. The Belmont Report Nour Krayem iii 2.1.2. Nuremberg Doctor Trials and Nuremberg Code Mario Alvarado 2.1.3. Tuskegee Syphilis Experiments Nour Krayem 2.1.4. Human Cell Lines Nathan Ferron 2.2.1. Legislation Nathan Ferron 2.2.2. Court Precedence Mario Alvarado 2.3.1. Medical Culture Regarding Informed Consent Mario Alvarado and Nathan Ferron 2.3.2. Criticisms of Informed Consent Mario Alvarado and Nathan Ferron 2.3.3. The Role of Culture in Informed Consent Nathan Ferron 2.4. Worcester Community Nathan Ferron iv 3.1. Interviewing Medical Professionals Mario Alvarado 3.2. Mapping the Delivery of Informed Consent Mario Alvarado 3.3. Analysis of the Situation of Patients of Cultural and Mario Alvarado Linguistic Difference 3.4. Determination of Effectiveness of Current Informed Mario Alvarado Consent Delivery 3.5. Rationale for Methods Mario Alvarado 3.6. Challenges With the Methodology Mario Alvarado 4.1 On Society and the Role it Plays Nathan Ferron 4.2 On the Role of Interpreters Nathan Ferron 4.3 On Religious and Cultural Considerations Nour Krayem 4.4 On Economic Considerations Mario Alvarado 4.5 On Trust and the Role it Plays Nour Krayem and Mario Alvarado v Table of Contents Abstract ............................................................................................................................................ i Acknowledgements ......................................................................................................................... ii Authorship...................................................................................................................................... iii Table of Contents ........................................................................................................................... vi Table of Tables ............................................................................................................................ viii Executive Summary ....................................................................................................................... ix 1. Introduction ................................................................................................................................. 1 2. Literature Review........................................................................................................................ 2 2.1. The History of Informed Consent ........................................................................................ 2 2.1.1. The Belmont Report ...................................................................................................... 2 2.1.2. Nuremberg Doctor Trials and Nuremberg Code .......................................................... 3 2.1.3. Tuskegee Syphilis Experiments .................................................................................... 4 2.1.4. Human Cell Lines ......................................................................................................... 5 2.2. Laws and Legality Regarding Informed Consent ................................................................ 6 2.2.1. Legislation..................................................................................................................... 6 2.2.2. Court Precedence .......................................................................................................... 7 2.3. Philosophical Discussions and Cultural Understanding within Informed Consent ............. 8 2.3.1. Medical Generalizations Regarding Informed Consent ................................................ 8 2.3.2. Criticisms of Informed Consent .................................................................................... 9 2.3.3. The Role of Culture in Informed Consent .................................................................. 10 2.3.4. The Role of Medical Interpreters in Informed Consent .............................................. 12 2.4. Medical and Cultural Situation within the Worcester Community ................................... 12 3. Methodology ............................................................................................................................. 15 3.1. Interviewing Medical Professionals ................................................................................... 15 3.2. Mapping the Delivery of Informed Consent ...................................................................... 16 3.3. Analysis of the Situation of Patients of Cultural and Linguistic Difference ..................... 17 3.4. Determination of Effectiveness of Current Informed Consent Delivery ........................... 18 3.5. Rationale for Methods........................................................................................................ 19 3.6. Challenges with the Methodology ..................................................................................... 20 vi 4. Findings..................................................................................................................................... 22 4.1. On Culture and the Role it Plays........................................................................................ 22 4.2. On the Role of Interpreters and Translations ..................................................................... 24 4.3. On Religious and Cultural Considerations ........................................................................ 26 4.4. On Economic Considerations ............................................................................................ 28 4.5. On Trust and the Role it Plays ........................................................................................... 30 5. Conclusions and Recommendations ......................................................................................... 32 References ..................................................................................................................................... 34 Appendix A ................................................................................................................................... 38 Appendix B ................................................................................................................................... 39 Appendix C ................................................................................................................................... 40 Appendix D ................................................................................................................................... 41 Appendix E ..................................................................................................................................