Genomic research has evolved into a massive international drive to understand ever more about how the human body functions, what vulnerabilities to disease can be identified, what predilections exist and how remedies can be more effectively targeted to improve health outcomes. This research does not involve the “generic” human body, but YOUR body.
Personal genome mapping may be the future of health care but it is also the next frontier in privacy, or lack thereof. To enable current investigations into genome trends and tendencies, researchers “mine” the proliferation of longitudinal large-scale biobanks that are collecting tissue and data from individuals across whole populations.
What if your data is included in such a bank and researchers stumble across some information that indicates your vulnerability to a serious, even life-threatening, condition. Should they inform you? What about your doctor? Your local health authority? The Department of Health? Your family?
In Incidental findings in genomic research: a review of international norms the authors examine efforts to establish guidelines about how and when this individual data should be released and used. They reveal a morass of confusing approaches that only vaguely identify an individual’s “right to know” or indeed their “right not to know”. Grappling with the ethical issues complicates the obligations of researchers and opens potential liabilities when information incidental to their investigations is discovered. Balancing the competing priorities of personal health and personal liberty is critical if collectively we are to realize on the promise that genome mapping offers.
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