From the editor
From the Editor
Dr. Schwarzenberger is the former physician editor of DermWorld.
By Kathryn Schwarzenberger, MD, October 1, 2019
Unintended consequences. What do direct-to-consumer (DTC) genetic testing, pediatric drug testing, and electronic health records all have in common? The potential for unintended consequences. Consequences of doing them, of not doing them, and of, perhaps, not using them as well as we could. Some may be good, others, not so.
This month in Dermatology World, we cover a diverse array of topics of interest to all of us who practice medicine. Millions of Americans now have direct access to at least some information about their own genetic code. While some of these tests focus more on providing generalized insight on ancestry, others include more detailed information about health-related issues some of which are relevant to dermatology. Have any of your patients asked you questions about this yet? If not, it is likely that someone will do so in the near future, and we can expect this trend to grow as the cost and ease of sequencing the human genome improve. While proponents support the individual’s right to access their genome, one only has to read the headlines from any of the news networks to begin to imagine the potential unintended — and often unanticipated — consequences that may result from this knowledge.
While many of the tests we order in our practices are perhaps not as consequential as genetic information, similar concerns could be raised about allowing patients direct access through EHRs to their medical information. Transparency can be complicated when it comes to medical information; while our patients want (and certainly deserve) access to information, they may lack the training to be able to adequately and appropriately interpret the results. On the positive side, many of my patients these days are very engaged and interested in learning about their diseases; they want knowledge and are willing to learn (hopefully from me and other reliable sources, rather than just “Dr. Google”). However, one of the most difficult things to explain is that there is often a difference between a test result and “the answer.” The former is easily found in their EHR, or in the letter from their DTC genetic testing company. However, the “answer” is often more elusive, and may require interpretation, which we all spent years learning to provide. Sometimes, there is no “answer,” and herein lies that fine difference between medicine being a pure science versus being an art that is heavily based in science.
Unintended consequences in pediatric drug testing? For years, research in children was prohibited under the assumption that research on children was unethical. It seemed to make sense, but today we recognize that children are not “little adults,” and having not done testing, we have inadequate safety information about many of the drugs we want and need to use in children. Many of the medications prescribed every day for children are used off-label. The unintended consequence of protecting our children from drug trials is that we may have unintentionally caused them harm by NOT studying medications. We discuss the history of pediatric drug testing and learn valuable perspectives from some of our esteemed peds derm colleagues who are working diligently to remedy this knowledge gap. When was the last time you referred a child to participate in a drug study? You may be able to make medicine safer for all children by participating.
October is one of my favorite months, even though it starts that crazy time warp that always seems to happen between Halloween and the New Year. The world just seems a little calmer with pumpkin spice on it.
