You Can’t Handle the Truth!
June 21st, 2010

Do you know your own health history?  Do you know your parents’ health history?  Do you know your cholesterol levels?  Do you know if you’re predisposed to heart disease, or alcoholism, or diabetes?  Do you know if you have the breast cancer gene?  If you do, I hope you had a doctor holding your hand, speaking slowly, and using small words when you found out.  Because, apparently that’s what the FDA thinks is necessary in order for “regular” people to come into contact with their own health information.

I was alarmed to learn last week that Walgreen’s had attempted to sell over-the-counter DNA tests to their customers, only to have their efforts squashed by the FDA.  After flexing their federal muscles the FDA explained that ordinary citizens “should not be making important medical and lifestyle decisions without first consulting a health care professional.” 

Yikes!  So every time I go for a run, which is part of my health and my lifestyle, I should call up the exchange at my internist’s office first?  Or every time I indulge in a corn dog and nachos and peanuts and Dippin’ Dots and a giant fountain Coke at a baseball game (don’t judge, sometimes nine innings takes a long time!) I should just check in with a doctor first?  Because I think I’m a big enough girl to handle these things.

Yes, I realize I took my indignation a bit far.  Perhaps the FDA has a point.  Perhaps finding out alone in your bathroom that you do in fact have the breast cancer gene would not be the ideal circumstance. Perhaps such life-altering information should come followed quickly by answers to the questions that will undoubtedly flood your mind, along with comfort and reassurance.  (Although an untold number of women have found out that they were pregnant – equally life altering – under those exact circumstances and it hasn’t become a social epidemic of any kind.)

I suppose the reason I have such a strong reaction to this particular bit of news is not the data point itself, but what came after it in the article referenced above.  Apparently the protocol of keeping patients in the dark dates back to the 1847 founding charter of the AMA which states that, “a patient’s obedience should be prompt and explicit.  He should never permit his own crude opinions… to influence his attention.”  So there you have it:  institutionalized condescension.    Further still, as recently as the 1950s physicians commonly wrote medical notes and prescriptions in Latin, in order to prevent their patients from understanding exactly what their conditions were.  And if that doesn’t make your head pop, a 1960s survey of cancer surgeons revealed that 90 percent of them would not tell their patients whether or not they had cancer in the first place. 

I thank my lucky stars that such bedside methodologies leave me slack-jawed today.  I cannot imagine being denied information about my own health under any circumstances.  So clearly the medical profession has come a long way since its founding.  But jumping back to the question of at-home DNA tests, I can’t help but wonder what, if any, merit such a restrictive policy might have.  Clearly the 1847 document quoted takes things much too far.  But is there an appropriate middle ground somewhere?

Let’s walk through this.  Suppose that the Walgreen’s tests go on the market.  Suppose they are verified to be accurate.  Suppose I take one and find that I am BRCA2 positive.  (Breast cancer does run in my family, so it’s not altogether out of the question.)  I am an intelligent, stable, and reasonable person.  What would I do with this information?  Cry?  Maybe.  Sit silently shell-shocked?  Also highly possible.  Call my primary care doctor first thing the next day?  Yes.  Call my sister to tell her to take the test too?  Yes.  Hit Web-MD and Google with a vengeance?  Clearly.  Slice off my breasts myself in some Van Gogh-esque frenzy of demented prevention?  Highly unlikely.    But it seems that this kind of response is exactly the kind of thing the FDA is worried about.  Or, perhaps more realistically, that people would ignore the data, slip into depression, or become self-flagellating in some other, less dramatic way.

I will concede that under the best circumstances devastating health news would be delivered by a doctor, armed with information about the prognosis, available treatment options, and support resources.  That’s the most perfect scenario for an imperfect situation.  But if we’re being realistic about things the fact of the matter is that a lot of people find doctors intimidating.  A lot of doctors, while brilliant, have miserable bedside manners prompting people to avoid them as frequently as possible.  And a lot of people will run the risk of letting serious conditions go unchecked just to prevent a trip to the doctor. 

So riddle me this:  What if people could get the keys to the medical kingdom, as it were, without the dreaded trip to the doctor?  What if they could find out about their DNA profile easily and privately, and then seek professional help when they knew it was necessary?  This wish came true in 1996 when the FDA reversed its 1990 ruling against at-home HIV tests.  And I don’t know, but I suspect, that many more people have been tested because of its availability than would have been in its absence.  HIV is about as dire a diagnosis as can be handed down.  If we are equipped to handle that dreaded news, how can we not be trusted to appropriately digest a broader range of risk factors? 

I am eager to see how this ordeal pans out.  I may not like it, but I’m pretty sure I could handle the truth.  Could you?

6 Responses to “You Can’t Handle the Truth!”

  1. BigLittleWolf Says:

    This is frightening, on many levels. But here’s one more issue for you. Those of us without employers providing health insurance. The use of this sort of data by insurance companies to make insurance impossible – or at the very least – prohibitively expensive.

    Then what?

    Provocative, well-written, and important piece, Gale.

  2. anne Says:

    Okay, I’m about to get a little wild, so sorry to everyone who finds me overly intense. I find the idea of knowing my genetics without a professional in my presence horrifying. Not everyone is well-educated enough to learn medical news and then hop on WebMD and understand everything it says. Doctors may not always be the best when it comes to bedside manner, but they do (most of the time) know what they’re talking about, and can provide accurate information. I’d be really concerned about how non-medical lay-people would interpret the information. I once started crying while reading a fact on WebMD, called my friend (a doctor), and she told me to chill out and explained the facts. I don’t believe most people could represent themselves in a legal case, and I don’t believe people should be left to decipher their DNA without in-depth study. Leave it to the people who’ve studied this stuff for years and years. That’s what they’re there for.

  3. Cathy Says:

    I think the crux of this argument is “What would people DO with this information”? As you said, you are an intelligent, stable and reasonable woman. I am too. However, I think that, especially when it comes to medical things, people are not well-educated. It is a stretch for me to think that most people would react in an intelligent, stable and reasonable manner.

    I agree though – I think that this should be a personal decision, not one regulated by some (mostly) useless bureaucratic government organization.

  4. Elaine Says:

    I’m all for knowing everything about myself then deciding whether I need to seek guidance to understand better. My body – my personal knowledge – my right to share that knowledge with whom I choose.

  5. Kate Says:

    I had a bunch of blood tests done a while back, only to learn from my OB that I had a clotting disorder. Ack. all I could think about were medicines I’d need to keep my pregnancy. And then I talked to an expert. Aparently the clotting disorder I have is not an issue if you have a good and varied diet. So, yes, you may need a doctor there, but not just any doctor.

    I think that we as patients need to have the information, and we need to make our own choices. (We do anyway.) But, having the right doctor there to explain what the results REALLY mean is invaluable.

  6. Rebecca K Says:

    I agree that it should be the patient’s choice. Doc guidance can be important, but the level of paternalism is ridiculous. Sure it would make sense to have doctor guidance with serious tests. But people shouldn’t be forced to. Besides, being a doctor means they have devoted an extended amount of time studying. If someone is so inclined, they can research and study a specific area of concern for themselves, using the same materials.

    Just because I did not choose to go to med school (though I’d be perfectly capable) does not mean I shouldn’t have access to health information and decisions.

    This is actually a real problem with childbirth. You should have seen what I had to go through to get a VBA3C, despite the fact that even ACOG guidelines suggested it would likely be beneficial. Docs don’t want to risk being sued, so there is an incentive to withhold information. Prime recent example: