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The protection of patient privacy and other rights is critical to creating public confidence in the collection of the data necessary for the practice of personalized medicine. Patients may be less willing to provide tissue and blood samples, or to disclose medical history information, if they fear that their data will be misused or their privacy will be violated. Appropriate informed consent for both research and treatment also is critical. Thus, assuring effective protection of sensitive information is a necessary prerequisite to the collection of the individually identifiable data that allow personalized medicine research and practice. Specific issues that may need to be addressed include: the potential impact on insurability and/or employment of “orphan patients” or “non-responders”; the potential for our society to use genetic characteristics in discriminatory ways; the implications for an ethnic group of genetic testing results that are common to a significant percentage of its members; the effects of predictive genetic test results on the personal responsibility and psychological well-being of the individual who is tested; and the rights and well-being of “third-party” non-consenting family members of an individual who undergoes a predictive genetic test.
Genetic Non-Discrimination
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