Dr. Robin Cook says the Human Genome Project
is helping to identify many more diseases associated with deleterious genes. He
writes this is changing the realities of risk pools, the grouping of individuals
by insurance companies for the purpose of selling them health insurance. The
ability to identify individuals with deleterious genes changes the capability of
insurers to continue to do risk pooling. They can exclude individuals with
pre-conditions from coverage and include those with low-risk. The model is
breaking down. This, he says, will lead to universal health care because it’s
the only alternative.
As more deleterious genes are found to be related to diseases, the number of individuals with pre-existing medical conditions is growing much larger. The Human Genome Project is shedding light on the connection between genes and diseases.
Researchers are discovering, for example, that genes are related to many more diseases than was previously known. They also suggest that each of us has deleterious genetic information within our DNA but for most it goes unexpressed.
This new understanding is only one result of the Human Genome Project, says Dr. Robin Cook in the New York Times. He explains that individuals with deleterious genes can now be identified even if there is no known treatment for the condition. It’s not an especially attractive option. Who wants to know that one carries incomplete genetic information that will result in a debilitating and ultimately fatal condition for which there is no treatment? Cook calls it a cruel and extended early death sentence. Not attractive at all.
in the form
and the treatment
–Dr. Robin Cook
But, it raises another basic challenge. Proliferating new diagnostic tools called bioinformatics (the use of computers to analyze and store genetic information) can easily identify individuals with genetic deficits. In effect, these people have pre-existing conditions. Those with pre-existing conditions are excluded from risk pools. Thus, new genetic information not only changes the practice of risk pooling for insurance purposes, it also opens the door to discrimination and denials of service, claims and coverage. Under these circumstances risk pooling breaks down.
Without risk pooling, Cook writes, the only practical alternative is non-profit, single payer, universal access to health care. In effect, he says, we must risk pool the whole nation. Every other industrialized nation already has this system.
Our health care system is broken. We pay more than any other industrialized nation for health care, and have worse results. Increasing knowledge from genomics and the capability for inexpensive diagnostics change everything. The potential exists for even greater disparity in the delivery of health care and for even wider injustice in access to services.
I hope we can awaken everyday people to the need to change this system. Those who will be trapped with less care and higher bills are ordinary folks, some of whom carry a ticking time bomb in their genetic code. Before it explodes I hope we can create a system that extends care to all who need it.
But that’s not the only approach to this subject. I know speaking of the Human Genome Project sounds arcane and far-removed from everyday life. It isn’t. It’s as close as your next child or your next grandchild. It’s directly related to “family values.”
And it’s extraordinarily important for ethical decisions and perceptions about how we will define what it means to be human. This is the great potential that the new genetics hold; that our self-understanding will be re-defined as new techniques are developed that give medical practictioners the ability to change the fundamental structure of the “software code” that defines us as human beings.