Wednesday, March 9, 2011

Should doctors own [the keys to] your genes?

The title of this post is weak, we know. We spent a long time crafting a clever, eye-catching one so that the one regular reader of Trading Kellys would spot it on her feed--because this is a fascinating topic, even if you won't get that from the post. But we failed, and are running with this bland title.

So, everyone knows that the human genome has been mapped & opened up the world to comprehensive genetic testing. (Or not: the editors haven't stayed up on this, but let's assume it's true for now.) You, a person on this planet, could have your genes tested for genetic disorders.

Except, maybe not. The U.S.D.A. needs to figure out if you actually need a doctor to tell you it's okay to test your own genes. There are hearings going on right now to figure out:

Agenda: On March 8 and 9, 2011, the committee will discuss and make recommendations on scientific issues concerning direct to consumer (DTC) genetic tests that make medical claims. The scientific issues to be discussed include:
(1) The risks and benefits of making clinical genetic tests available for direct access by a consumer without the involvement of a clinician (i.e., without a prescription). The discussion will include consideration of the benefits and risks of direct access for different tests or categories of tests that would support differences in the regulatory approach. Clinical genetic test categories that have been proposed to be offered directly to consumers include:
(a) Genetic carrier screening for hereditary diseases (e.g., cystic fibrosis carrier screening);
(b) Genetic tests to predict risk for future development of disease, in currently healthy persons (e.g., tests to predict risk of developing breast or ovarian cancer); and 
(c) Genetic tests for treatment response prediction (e.g., tests to predict whether individual will respond to a specific drug).
In order to find out what you are---your genes being you; to find out what diseases you may be prey to; to find out what drugs will work for you: You might need a prescription. Which means you'll need a doctor. Which means you'll need insurance or pay out of pocket; which means you'll have to wait however long it takes for an appointment; which means the doctor might not give you a prescription. 

Consider that: Not only do you have to go through the time & expense of getting the prescription to find out the most instrumental things about yourself: You might not be allowed to do it at all.

This is a problem. One editor has sufficiently bitched to the world about needing a prescription for an A-1C test. It's just par for the course for the current state of medicine. You are expected to be a lapdog to your doctor; to have no ownership over your health; to take the pills you are told to take, eat what you are told to eat, and return as often as feasible for the tests you are told to take--and expected to be grateful for the privilege.*

It's criminal. As the illustrious author Igna Muscio has written: "Western medicine . . . is based on a law opposed to the one the rest of the universe seems to go by, namely: Healing Has Nothing to Do with You, Just Follow the Directions on the Label." 

*Certain other proprietors of Trading Kellys are welcome to write about the regulatory capture, public-choice theory, and other economic incentives that are fueling these regulations. This editor has to go back to work.

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