Whole genome sequencing is a double-edged sword, says the US government’s leading bioethics advisory group, and safeguards are needed to protect the privacy of patients.
A major report from the Presidential Commission for the Study of Bioethical Issues, released last week, sets down principles for regulation and legislation in the burgeoning field. The cost of tests based on sequencing an individual genome is plummeting, and they will be increasingly important in diagnosing disease. However, says Commission Chair Amy Gutmann,
“The life-saving potential of genome sequencing depends on gathering genetic information from many thousands (perhaps millions) of individuals, most of whom will not directly benefit from the research. Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality, for example, about any discovered genetic variations that link to increased likelihood of certain diseases, such as Alzheimer’s, diabetes, heart disease and schizophrenia. Without such assurance in place, individuals are less likely to voluntarily supply the data that have the potential to benefit us all with life-saving treatments for genetic diseases.”
The report points out that only about half of America’s states offer protections against surreptitious commercial testing. This means that someone may get saliva from a discarded coffee cup to see whether an individual has predisposition to neurodegenerative disease. Test results could be used as evidence of unfitness to parent in a custody case because of a predisposition to alcoholism or depression. Test results could be posted on Facebook, prejudicing someone’s chances of finding a spouse, achieving standing in a community, or pursuing a career path.
The 150-page report recommends a dozen forms of privacy protection. It is available on-line.
One fascinating feature overlooked in media reports was the Commission’s framework for discussing the ethics of genetic privacy. In its 2010 report on synthetic biology the Commission expanded the three Belmont principles of respect for persons (autonomy), beneficence and justice. These worked well in discussing the ethics of dealing with individual patients.
But in discussing the institutional and public effects of technological advances, the Belmont principles seemed inadequate. So the list has grown to six principles: respect for persons, public beneficence, responsible stewardship, intellectual freedom and responsibility, democratic deliberation, and justice and fairness. This is a useful, but provisional, framework. It still needs to be critiqued. Reuters, Oct 11
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