Moral "Do," Legal "Don't"
Following the legally-binding or "approved" method doesn't always feel "right."
Case in pont: Gholson Lyon, a physician and researcher at the Center for Applied Genomics at Children's Hospital of Philadelphia, was leading a study on Ogden Syndrome, a rare disorder with a horrifying effect --rapid aging and premature death in infants.
"The study," according to an article by Matthew Dublin of GenomeWeb, "published in the American Journal of Human Genetics in June, sequenced the exons of an affected boy and 11 family members, including his parents. During the course of the study, the boy's mother became pregnant and wished to know whether she was a carrier of the disease. But because Lyon was running a research study, and because the test was not performed in a manner that was US Clinical Laboratory Improvement Amendments certified, he could not share her results with her. The baby was born with the disease, and died three months later. Lyon eventually developed a CLIA-certified test for the disorder, but it took time. ‘I was dealing with [the reference lab] ARUP and it took months to develop the test. But by that time, she had already given birth and for five months I couldn't tell her,' he says."
The article went on to say that in a July Discovery Medicine paper, Lyon revealed that during the course of a study on ADHD, he discovered one research participant had idiopathic hemolytic anemia. Again, Lyon was unable to reveal the finding to the subject.
Have you ever felt the strain of doing what you are instructed to do, even when it doesn't feel quite right?