The Presidential Commission for the Study of Bioethical Issues, a government advisory panel, released a statement reinforcing the need for privacy protection for those who choose to submit their whole genome sequencing for the purpose of medical research. Genomes given by individuals could provide the opportunity for huge advancements in research including “new treatments or cures” shares Janice Lloyd in a recent article in USA Today.
This article suggests that as the cost of sequencing becomes more and more cost effective the “tests are expected to become routine among physicians and researchers.” (Lloyd) The advisory panel introduced the idea of creating state and federal level laws to ensure the privacy of this data. The laws could be preventative measures to keep the data from ending up in the wrong hands, such as “insurance companies or employers who could use it as a form of discrimination.” (Lloyd) Affirmation that individual patient genomes would be kept confidential could increase the number of willing research participants. Genome sequencing could present groundbreaking improvements for genetic treatments or cures, however, the privacy of research volunteers must be protected. How does one do this when the genome is the ultimate identifier?
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