Privacy and Progress in Whole Genome Sequencing

In October of 2012, the Presidential commission for the Study of Bioethical Issues published a comprehensive report: Privacy and Progress in Whole Genome Sequencing. The goal of the report is to compare the societal benefits of whole genome sequencing with the individual privacy risks.
Most scientists, ethicists, and policymakers agree that data sharing is extremely important in increasing the pace of whole genome research. By bringing together the genomic sequences of large populations of people, researchers can work together to learn more about the human genome and eventually use that knowledge to treat disease. 
However, because whole genome sequencing is so novel, there are concerns about how this new technology will affect individual privacy. For instance, because of the emphasis on sharing data, the increased number of individuals who can access and possess individual genomic data makes the accidental release of the data more likely.  Also, the report suggests more malicious scenarios.  For example, an ill-meaning individual could pick up an unsuspecting person’s discarded coffee cup and send the saliva sample to a commercial genome sequencing company. The genomic data then could be used to threaten the person’s career and livelihood.
Because of these risks, the report makes recommendations to protect individual privacy, while allowing for data sharing in whole genome sequencing. Here are a few of the suggestions:

  • The government should adopt privacy laws to protect individual privacy. Specifically, laws are needed to prohibit unauthorized whole genome sequencing without consent from the individual.
  • The consent process for whole genome sequencing research should be comprehensive and clearly define the benefits and potential risks to the participant
  • There needs to be improved data storing and sharing security to better protect the participant’s sensitive information

The report concludes that though there are risks to individual privacy rights, the enormous benefits for health that can result from whole genome sequencing make this type of research worth pursuing.