A week ago I posted on a rather scary case of medical doctors withholding information from a family because they felt that it was in the best interests of the family. I objected mostly because I don’t have a good feeling about this sort of paternalism. Laura Hercher has a follow up. She’s not offering just her opinion, but she actually made some calls to people who were involved in the case. From what I can gather in her post the issue that triggered this outrage (in my opinion, it’s an outrage) is that for these particular tests informed consent was simply not mandatory. Since they didn’t have the consent a priori, the doctors had to go with their judgement.
The reality here is that there isn’t a good solution. That’s because we’re not talking about science, we’re talking about values. The behavior of the medical doctors, withholding information which has serious life consequences, is still objectionable and unacceptable to me. But that’s me. I have a strong bias toward more information, and from all the social science data I’ve seen most people do too. And yet not everyone. Doctors are not mind readers, and they couldn’t consult the parents in this case, because that would be tipping them off that something was up. There are no optimal solutions in such cases, so naturally your values inform the outcome. The ultimate decision reinforces my perception that the medical community has a bias toward values paternalism, and reduces my trust in them.* I qualify with the term values, because we’re not talking about medicine as science (e.g., the danger of antibiotic resistant bacterial lineages), but medicine as an art which comports with what we think are the ends of the good life. There is legitimate specialist agreement on the former (science). Specialist agreement on the latter is much more dodgy. I won’t bend my knee to any priest.
Your life is in your own hands. I am convinced by the social science that one reason more educated patients live longer is that they are more engaged partners in the health care process. Therefore I have no hesitation in being a partisan, and being an unapologetic expositor for my values. Unfortunately these are matters which often shake out in a winner-take-all fashion. If you don’t make your voice heard, you may be forgotten. If I ding the reputation of the medical profession a bit by speaking too broadly, so be it. I have to deal with the consequences for my own health for the choices I make, and can make.
Finally, there’s the issue of children. This is a fraught topic for legitimate reasons. If you want to get your son circumcised in the United States, you can do it. If you want to get your 10 year old circumcised in the United States, and he doesn’t want to get circumcised, I suspect if you were persistent you could get someone to do that for you. In other words, there is a great deal of control that parents have over their children. The rights of minors are sharply demarcated, and society tends to give a great deal of latitude to parents in terms of what they can do to their children. But there are limits. If I wanted to get my daughter circumcised I would probably not only be unable to have a medical professional who would sign on to this, but the authorities might actually take her from me. That’s because as a society we’ve decided that male circumcision is not child abuse (even though it is very difficult to reverse this process on the physical body), while female circumcision is. The point isn’t about the consensus here, it is that society achieves certain understandings of the boundaries of parental control, and enforces those boundaries with force. This isn’t a science. You can disagree with the social consensus, but no matter what, it will impact you.
When it comes to what a child should know I tend to disagree with the consensus among genetic counselors. It seems that the implication from the current guidelines is that children shouldn’t be tested for adult onset disease until they can give consent. I can’t go along with this. I would caution, and probably try to dissuade, any friend who wanted their son circumcised as an infant. It’s a body part you can’t get back. But at the end of the day I believe that this is something parents should be allowed to decide without fiat outside interference (I am in favor of dropping insurance coverage for the practice, but not in favor of banning it). If so, then I certainly think that testing of children should be allowed, with at minimum a neutral take from the counseling industry. Parents are allowed to indoctrinate their children in all sorts of crazy ideas, and even put them through surgery. That doesn’t mean that it’s right for children to be subjected to information before they’re adults about possible genetic diseases. But, I do think parents should be allowed to indoctrinate their children, and even subject to them some surgeries (e.g., circumcision, but in the past parents have had their children lobotomized!), even if I disagree with them. If I have such a low threshold on social paternalism, then I think there’s no reason to be so cautious of genetic information. Yes, it could have lifetime consequences, but so does raising your children with crazy beliefs (you’ve met these people as adults, so you know what I mean). I have a clean conscience advocating for my info-maximalist position. If I don’t, then the game is already over before it began!
* Several doctors complained that I generalized here, but deal. I’ve had doctors my whole life (I had pretty bad asthma as a kid, so I saw lots of doctors as we moved from place to place), and the clear null assumption from most is that I’m a moron until I make it clear that I’m not going to take their word for everything. It’s probably good for doctors to assume their patients are not too bright, because many aren’t. But as a matter of course that probably feeds a bias toward paternalistic behavior. That’s not right or wrong, as much as it is. To a great extent I trust the institution of modern medicine and public health. But I don’t really trust any given doctor. They’re human, with all the biases that humans bring to the table.