Item – Theses Canada

​
OCLC number
461541150
Link(s) to full text
LAC copy
LAC copy
Author
Hayeems, Robin Zoe,1974-
Title
Informed consent and genetic databases : an exploration of the authorization model.
Degree
Ph. D. -- University of Toronto, 2007
Publisher
Ottawa : Library and Archives Canada = Bibliothèque et Archives Canada, [2007]
Description
4 microfiches
Notes
Includes bibliographical references.
Abstract
In order to identify genes associated with common complex disorders, genetic databases are emerging worldwide and highlight the convergence of the fields of molecular genetics and public health. The nature of the methodology and technology required for this purpose necessitates careful examination of the process of informed consent. This study considered the authorization model as one approach to informed consent in the context of genetic database research. Using a conceptual framework grounded in moral theory, I argue that in order to suit this context, an evolution in the process of informed consent is warranted. A non-experimental, cross-sectional survey design was used to learn about the factors that influence potential research participants' willingness to authorize the use of various types of personal health information (PHI) under a range of conditions. Individuals who had pursued genetic testing for one of four late onset hereditary disorders were invited to participate in a 40 minute interview. Included in the interview guide was a previously piloted tool called the Health Care Information Directive (HCID). Quantitative data were analyzed using logistic regression and text data were analyzed using a content analysis. 199 individuals participated in this study. Key findings include: (1) genotype status, self-reported privacy level, and anonymization level are significant predictors of willingness to authorize use of PHI, (2) type of PHI (genetic, non-genetic, family history information, information gleaned from a blood sample) is 'not' a significant predictor of willingness to share PHI, casting doubt upon the genetic exceptionalism debate, (3) willingness to share health information is not significantly influenced by the nature of a specific research or administrative purpose for which it is requested, (4) the HCID tool can be simplified based upon these findings and still cohere with the principles of the authorization model, and (5) the concepts of trust, safeguards, altruism, and reciprocity are fundamental to understanding the factors that influence authorization and can be used to guide further exploration of the authorization model and the evolution of the informed consent process for the context of genetic database research.
ISBN
9780494280713
0494280719