What Research Participants Want to Know About Genetic Research Results: The Impact of “Genetic Exceptionalism”

The disclosure of individual genetic results has generated an ongoing debate about which rules should be followed. We aimed to identify factors related to research participants’ preferences about learning the results of genomic studies using their donated tissue samples. We conducted a cross-section...

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Bibliographic Details
Published in:Journal of empirical research on human research ethics 2011-09, Vol.6 (3), p.39-46
Main Authors: Ruiz-Canela, Miguel, Valle-Mansilla, J. Ignacio, Sulmasy, Daniel P.
Format: Article
Language:English
Subjects:
Bioethics
Biological specimen banks
Cross-Sectional Studies
Disclosure
Disease risk
Female
Gene banks
Genetic Research
Genomics
Human genetics
Human subjects
Humans
Information sharing
Male
Medical ethics
Medical genetics
Medical Records
Middle Aged
Oncology
Preferences
Public Opinion
Research Design
Research ethics
Research studies
Research Subjects
Risk Assessment
Spain
Tissue and Organ Procurement
Understanding the Perceptions of Potential Research Populations
United States
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Summary:The disclosure of individual genetic results has generated an ongoing debate about which rules should be followed. We aimed to identify factors related to research participants’ preferences about learning the results of genomic studies using their donated tissue samples. We conducted a cross-sectional survey of 279 patients from the United States and Spain who had volunteered to donate a sample for genomic research. Our results show that 48% of research participants would like to be informed about all individual results from future genomic studies using their donated tissue, especially those from the U.S. (71.4%) and those believing that genetic information poses special risks (69.7%). In addition, 16% of research participants considered genetic information to be riskier than other types of personal medical data. In conclusion, our study demonstrates that a high proportion of participants prefer to be informed about their individual results and that there is a higher preference among those research subjects who perceive their genetic information as riskier than other types of personal medical data.
ISSN:1556-2646
1556-2654
DOI:10.1525/jer.2011.6.3.39