WHO CONTROLS YOUR GENOMIC AND OTHER HEALTH INFORMATION?
Who controls your genome sequence and other health information? What should be delivered and how? These are important issues. The answer to who controls your genome information should be obvious—you do. Your DNA sequence is yours and you have a right to it. However, the implementation of this concept is not as straightforward as one might think. What information you want and how it is returned requires serious thought. Do you want all of your information returned to you or just the actionable information? What is your definition of actionable? What if there is uncertainty about the accuracy of the prediction?
As an example of what many people would consider nonactionable information, do you want to know whether you have the Huntington’s high- risk change? If you have the high-risk change for this gene, your chance of getting this progressive neurological (and ultimately fatal) disease is extremely high. There is no cure, however, so the information will not help you medically; that is, there are no treatments or other lifestyle “actions” that one can take to avoid or lessen the ravages of this disease. Some might argue, however, that this information is still actionable, because you might choose to base your life decisions on this information. Examples of actionable information include the breast cancer risk changes (e.g., BRCA1 and BRCA2) or the risk allele for hemochromatosis; individuals with these mutations should get monitored for disease because there are known treatments to mitigate or even cure these conditions. Ultimately, the decision to receive any genetic and medically relevant information should belong to the patient.