WHAT IS A POSSIBLE SOLUTION?
It is our belief that everyone should get their genome sequenced as early as possible, ideally before birth and only after counseling of the parents. The immediately actionable information (e.g., metabolic disorders that could be fatal in newborns if not treated) should be returned to the parents to help manage health. Other actionable information that could ultimately be valuable to the child (and thus indirectly to the parents!) would be returned at the discretion of the parents. The children have a right to access their DNA when they become of age, but again only after counseling. Both parents and children may opt not to ever retrieve their sequence and its interpretation. Furthermore, given that our interpretation of genome sequences will likely improve as more people get their genomes sequenced, the release of an improved interpretation to a person later in life will likely be more accurate.
One advantage to this solution is that should a child experience a difficult health situation, his or her genome could be accessed right away and potentially provide one more useful set of information for solving the disease and/or for managing its treatment. For example, if a debilitating disease occurs, it may be possible to quickly search for possible clues in the child’s genome sequence to solve the mystery disease. In many cases this could help avoid a long diagnostic odyssey.