Let ’ s Keep Genetic Information an Individual Affair

These times train us to seek continually for more data and more transparency, always assuming that more is better. But some types of data and transparency bring risks, because “A little learning is a dangerous thing.” In particular, sharing genetic information with family members raises daunting ethical issues, along with the need for a mature understanding of consequences, as illustrated by a court case from the UK recently reported in The Guardian. Superficially, this case seems to be a simple balancing act concerning how far a doctor is responsible to fulfill a family member’s right to know. But in context of our modern scientific knowledge about genetics–and the limitations of that knowledge–far greater concerns emerge. In this case, a man in the latter stages of life was diagnosed with Huntington’s disease. His daughter was pregnant at the time. After the baby was born and the man died, his daughter sued the doctor because the doctor had failed to inform her of her father’s diagnosis. She claimed that she would have aborted the fetus had she known. She, in fact, was later diagnosed with the dreaded condition, meaning that her daughter has a 50% chance of developing the condition too. The Guardian reports what I consider a proper and satisfactory resolution to the case–upholding the doctor’s right to suppress the information and denying the mother a victory–but the newspaper reports that the case was disturbing b...
Source: EMR and HIPAA - Category: Information Technology Authors: Tags: Genomics Data Transparency Privacy Source Type: blogs