Here’s a caption from a Time article, What Your Doctor Isn’t Telling You About Your DNA:
Nice to know that two physicians in Philadelphia not only have medical degrees, but specialize in mind-reading the parents of this nation! Above the caption is a photo of the two concerned and worried looking professionals in question. Let me quote the first two paragraphs of the article:
The test results were crystal clear, and still the doctors didn’t know what to do. A sick baby whose genome was analyzed at the Children’s Hospital of Philadelphia turned out to possess a genetic mutation that indicated dementia would likely take root around age 40. But that lab result was completely unrelated to the reason the baby’s DNA was being tested, leaving the doctors to debate: Should they share the bad news?
When it comes to scanning DNA or sequencing the genome — reading the entire genetic code — what to do with unanticipated results is one of the thorniest issues confronting the medical community. Many conflicted discussions followed the dementia discovery at the Children’s Hospital of Philadelphia (CHOP) before a decision was reached: the parents would not be told that this fatal memory-sapping disease likely lurks in their child’s future. Given the hopelessness of the situation, with no treatment and no cure, the doctors said forwarding such information along felt pointless. “We came around to the realization that we could not divulge that information,” says Nancy Spinner, who directs the hospital laboratory that tested the infant. “One of the basic principles of medicine is to do no harm.”
The fourth in a five-part series exploring the promise and pitfalls of sequencing children’s genomes
Around the same time, Spinner’s lab also tested another child — an unusually short 2-year-old referred for kidney disease — and discovered the toddler had a gene linked to a rare form of colon cancer. In some cases, polyps arising from this kind of cancer have been known to develop as early as age 7. This time, the decision to inform the parents was easier: “We feel good about that one,” says Spinner. “Proper screening can make a huge difference.”
Please. The high priests of medicine know better than you what you would like to know about your children! Think about this logically, and apply this rationale to non-genetic disease. Would doctors conclude that perhaps parents shouldn’t know that their child has a terminal disease which would cut short their life until the illness is closer to manifesting visibly, to save them worry? Perhaps doctors already do this? I have no idea now. My trust has just gone down with the statements above.
John Haws has post up titled Lying to patients about genetic tests is wrong. I agree with the sentiment. I understand that physicians are in a no-win situation. There are parents like me who want as much information as possible, and others who wish to not know information which might imply an unpleasant destiny for their beloved offspring. I say might because how exactly do the doctors above know that in 40 years this situation would be hopeless? Would medicine make no progress? More prosaically, if someone’s realistic lifespan is 40 years, they might wish to make appropriate preparations to live life to the fullest. Individuals with cystic fibrosis have had to make these calculations for decades, once medicine was such that it allowed them to attain adulthood, but middle age only rarely.
All this sort of story does is make me be convinced that what we need widespread personalized genomics so that we can analyze our own sequences with open source applications, and cut the physicians and institutional testing laboratories out of the equation. I also believe that this sort of fiat paternalism on the part of the medical community is frankly going to make enemies of exactly the sort of engaged high-information patients who can be their allies in staving off public hysteria about vaccination and the like. On the whole physicians do know better about illness than their patients. But they should leave the fine-grained ethics to others, because in that domain they’re capable of quite gross malpractice from where I stand. Be honest and do your best are coarse dumb rules which will serve us well in the future.