Run From the Genome

By David I. Sheidlower

Why the human genome project is a distraction from really making changes to health care provision.

Is this true? Thus far, the majority of critics of the human genome project have been more able to point to the drawbacks and risks of the project than to suggest an alternative. One of the most seductive features of the project is that it does not discount most alternatives to conventional medicine. Acupuncture? Herbal medicine? The human genome project can help. We could measure who is genetically more pre-disposed to finding these treatments effective.

The human genome project does not correct a single medical error. It does not solve the problem of how to pay for health care or the bigger issue of what or who should be covered. In fact, given that it may lead to expensive new treatments, it may make the financial and ethical problems around access to treatment more acute.

The medical profession measures "access to care" as separate from "quality of care" in this case. Those in the medical profession like to consider themselves as responsible for creating the best quality care their profession can deliver and leave the problem of how it's paid for to someone else. This makes them focused, not necessarily irresponsible. So, when Dr. Frist talks about improving the quality of health care he is referring to the quality of care the current system is capable of delivering, not necessarily the care you will be able to afford.

The first step to developing a different perspective lies in focusing less on the profession of medicine and how it is in conflict with the business of insurance (be it government funded or private). A true alternative relies on thinking about the output of the entire health care industry. Currently we consider the health care industry as one which is charged with delivering treatments, visits, drugs and hospital stays and the business of insurance as being responsible for paying for it. What if we considered that there was an industry and we charged it with producing health?

If that sounds difficult, remember we are comparing it to mapping the genetic code of our species and then using that code to "fix" individuals.

As anyone who evaluates an industry's success will tell you, the way to hold an industry accountable for producing a given product is to measure the input against the output. The less input to produce a unit of output, the more efficiently the industry uses its resources. Let's look at the objections to measuring someone's functional health status.

Measurement schemes don't exist. There are at least 3 industry developed measures of function. The SF-36 is a survey made up of 36 questions. ICIDH-2, the International Classification of Impairments and Function, was developed by the World Health Organization. And ADL (Activities of Daily Life) which zero in on the things we consider important to be self-sustaining individuals. None of these measures is less than 20 years old.

There's no scientific literature supporting these measures. Actually, there is a steady stream of literature that began in the late 1960's which posit functional health status as a better predictor for future health care utilization than diagnosis. Lisa Iezzoni, a physician at Harvard Medical School, was referring to the literature when she told the Social Security Administration: "Functional health status is more predictive of how long someone will live than diagnosis".

If these measurement schemes are so good why doesn't the medical profession use them? That's like asking why did the food industry has to be forced, through regulation, to put weights and nutritional information on packages. Why isn't measuring health promoted by the professions that claim to be providing it? When you measure function, you sometimes find the medical approach is not the best use of resources. You may find that instead of a doctor, you really need a physical therapist. From there, you might actually find that in place of a physical therapist you might need ergonomic accommodation at work goes beyond a chair with a bunch of levers. Or you might find that the best treatment for diseases associated with malnutrition can be provided by a nutritionist or that you don't even need a nutritionist; you need to build a supermarket in the neighborhood where the patient lives.

The mapping of the human genome is a distraction from such issues. It keeps the focus on professional medicine as a miracle providing industry. It keeps the argument of access to care and who pays for it completely separate from the issue of "are we getting our money's worth". It keeps us watching laboratories and ignoring neighborhoods.