Dec 04 2007
Mark, who writes the denialism blog, sent me this story that he blogged about the other day. It is the tale of an HIV+ mother who has bought into the HIV denial community’s paranoid rantings. In turn the HIV deniers have taken it upon themselves to give her some medical advice, including not treating her HIV, not testing her infant, and breastfeeding her infant. Mark correctly points out that the available data shows that breastfeeding carries a 12-15% risk of passing HIV from the mother to the child. Their advice, therefore, if taken, is likely to result in the untimely death of both the mother and her child.
As an aside, the story itself has not been verified and is based upon the anonymous postings of the alleged mother on an HIV denial forum. Whether or not the mother turns out to be real (perhaps it is someone baiting the HIV deniers, for example) is actually irrelevant, the advice given by the HIV deniers is real – meaning that it is the sincere advice they give to HIV+ mothers.
The story brings up many very interesting and important legal and social issues. What, if anything, are the liabilities and responsibilities of free citizens giving medical advice? In the US this is generally covered under the principle of freedom of speech, which of course I heartily endorse. But free speech has always been limited by another ethical principle – that of not causing harm to others (such as the cliche example of yelling fire in a crowded movie theater). The courts have held individuals liable for speech that directly incited others to violence. Speech that preaches hatred is protected, but you still can’t tell your audience to grab a weapon and go out and kill the targets of your hatred.
Should the same ethical principles should apply to medical advice? The free exchange of ideas is vital and worth protecting, which means that unpopular and minority opinions must be tolerated. But it is possible to balance the unfettered expression of medical opinions while protecting the public from dangerous medical advice. Most venues that discuss medicine often include the disclaimer, “None of the opinions expressed here are meant to diagnosis or treat any disease or illness. If you have any medical problems you should consult your physician.” That is a fairly standard and painless disclaimer. It may not be very effective, but at the very least it expresses to the reader that a lay person discussing biology and medicine should not be substituted for professional medical advice.
But it seems that society increasingly tolerates non-professionals practicing medicine – something that used to be a crime (technically it still is, but is watered down to insignificance). Today it is not uncommon for coaches, psychics, and that guy behind the counter at the supplement store to give medical advice. Now any crank with computer access can start a website or just join a forum and start dispensing their nonsensical ravings as if they were sound medical decision-making.
I don’t think society has adequately wrestled with many of the questions raised by our new found ubiquitous access to information. For example, should Kevin Trudeau be held ethically and legally responsible for the horrific medical advice he dispenses in order to fleece the public? Should a faith healer be responsible for the health of the faithful they convince to throw away their medication because they have been healed? And should HIV deniers be held responsible when they tell an HIV+ mother to breastfeed their child? Should off-the-cuff personal advice be treated differently than an organized campaign of disinformation or fraud?
I admit that I am raising questions more than advocating a strong position. I am concerned about the chilling effect on free speech that any such liability could have.
Right now the line seems to be drawn at conscious fraud. Even then, however, the penalties are little more than the cost of doing business and the loopholes are wide open. Trudeau had no problem selling books filled with nonsense under the protection of free speech, even after the Federal Trade Commission found him guilty of deception and banned him from selling products on infomercials.
Maybe we just need more effective enforcement against fraud. This would not include those who dispense their advice because they are ideologues, or who do not collect fees for their advice, however. Here the line is much more fuzzy (is a faith healer accepting donations the same as taking a fee?). Also, we don’t want to hold granny liable for offering you chicken soup for your cold. Can we draw another line, however, between casual advice from friends and family and medical advice given in a public forum?
A legal remedy could either be criminal or civil. The bar for criminal liability should definitely be fairly high, but I think it is perfectly reasonable to hold people liable to civil action if they take it upon themselves to give medical advice to others. The weakness of a civil remedy is that those people who take such advice are not likely to admit their decision was a bad one and to seek civil recourse. Con artists routinely count on this fact.
In the end, although I think we do need to thoughtfully tighten up our regulation of the giving of medical advice, any legal remedy is extremely problematic. The far better solution is to educate the public so that they can recognize nonsense when they see it. This, however, is also a very imperfect solution as it is far easier to spread misinformation than it is to correct it.
Until we can find better solutions, at least we can blog about it.
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