Listening to NPR yesterday, there was a discussion of a problem in medical ethics that is only possible due to advances in medical technology.
It has long been generally accepted that there is doctor/patient confidentiality, that what the doctor find out about a patient cannot be released to other folks without the patients consent. And that concept usually works well enough, and doesn’t pose problems for the doctors; after all, if you’ve fallen and busted your hip, or if you’ve shot your eye our with a BB gun, it doesn’t matter to others… your condition doesn’t threaten them. Now, if you have Ebola or smallpox or some such, such that you are a direct threat, then things get different, and alerting the authorities makes sense. That’s where the change in policy makes sense…. where your medical info means that you are a danger to others. Without that danger, it’s just accepted that your diagnosis remains between you and your doctor, unless you specifically authorize him/her to tell others.
But modern medical technology provides a whole new class of patient. Doctors and researchers in medical trials often use gene sequencing to find that a subject has a genetic predisposition for, say, breast cancer. The thing is, a lot of these genetic problems are inherited traits, and if you have ’em, chances are statistically pretty good that your parents/children/siblings have them too. And form a medical standpoint, a lot of these genetic flaws mean that you should get checked out ASAP. Early diagnosis and treatment is vital. For example, Angelina Jolie some time back underwent a preventative double mastectomy because she had the gene for breast cancer. That may be extreme, but it’s not wholly unreasonable, and it’s an option that should be available to anyone with the gene in question. But a person obviously wouldn’t get that done unless they knew they had the gene.
So… you have a patient who turns out to have Mutant Gene X. This gene is known to commonly reside in parents and siblings. It’ll sit there for decades, doing nothing, then suddenly spring to life and kill the patient in the worst way possible. But if caught and treated early, it need be not risk at all. But the patient *hates* his siblings and parents, and has disowned his own children, and speaks to none of them and will tell none of them what has been found. What’s the doctor to do?
On the one hand, confidentiality. On the other, the duty to save lives. One suggestion that was made was to contact the family members and give them a *vague* “Y’all need to get checked out,” without referencing either the patient of the specific condition. But I’m pretty sure that an out-of-the-blue warning from some Mystery Doctor would rarely be well taken.
Let’s say the doctor did nothing, falling on the side of confidentiality. And then a family member falls ill, suffers greatly, and the family goes broke in a vain effort to treat the illness. And then they find out that the doctor knew, and knew early enough that he could have prevented the whole thing. Such a doctor might find him on the receiving end of a *lot* of anger, threats, violence and lawsuits.
As yet, there is no accepted policy here. But I suspect there had better soon be one.