The US Presidential Commission for the Study of Bioethical Issues has this week published a report entitled 'Privacy and Progress in Whole Genome Sequencing'
Quoting from the introduction of the report:
Over the course of less than a decade, whole genome sequencing has progressed from being one of our nation’s boldest scientific aspirations to becoming a readily available technique for determining the complete sequence of an individual’s deoxyribonucleic acid (DNA)—that person’s unique genetic blueprint. With this tremendous advance comes the accumulation of vast quantities of whole genome sequence data and complex questions of how—across a multitude of clinical, research, and social environments—to protect the privacy of those whose genomes have been sequenced. Collections of whole genome sequence data have already been key to important medical breakthroughs, and they hold enormous promise to advance clinical care and general health moving forward. To realize this promise of great public good ethically, individual interests in privacy must be respected and secured. The report identifies several instances where processes to ensure confidentiality or privacy needed to be clarified and strengthened. Some of them have been discussed before in this blog - for example there are legal differences depending on whether the tissue sample taken for sequencing was taken by your doctor or a researcher - but others are more obscure;
Another quote from the report:
Another privacy concern associated with whole genome sequencing is the potential for unauthorized access to and misuse of information. For example, in many states someone could legally pick up a discarded coffee cup and send a saliva sample to a commercial sequencing entity in an attempt to discover an individual’s predisposition to neurodegenerative disease. The information might then be misused, for example, by a contentious spouse as evidence of unfitness to parent in a custody case. Or, the information might be publicized by a malicious stranger or acquaintance without the individual’s knowledge or consent in a social networking space, which could adversely affect that individual’s chance of finding a spouse, achieving standing in a community, or pursuing a desired career path.
The report recommends procedures & laws for the protection of privacy are consistent across all possible sampling entities, all sequence data must be stored anonymously and protected to a high degree of security. Those who's DNA is being sequenced should remain in control of its use and steps are to be taken to promote all that is learned from the data to the widest possible audience, in the public interest.