The Genetic Revolution: Force Behind a More Ethical Healthcare System?

March 1994

Genetic research is having a revolutionary influence on healthcare delivery, on medical practice, and on society, Jeff C. Goldsmith, PhD, said in a recent interview with Health Progress. In his work as a futurist, Goldsmith looks for the forces driving healthcare changes. For years he believed the main driving forces were the organization and financing of healthcare services. Now he says, "The underlying mover is technology and the changes in medical practice that result from that."

The changes will require society to rethink its values and behaviors, says Goldsmith, who is president of Health Futures, Inc., Bannockburn, IL. "The people who are working on the Human Genome Project realize they're laying down a baseline of knowledge that will completely reshape medicine," he says. Biomedical ethics centers have begun to generate a body of critical thought about what the new knowledge will mean.

Human Genome Project
The Human Genome Project is being conducted in the United States by the National Institutes of Health and the U.S. Department of Energy. Several other countries also have genome programs. Scientists involved in the Human Genome Project are mapping the human body's chromosomes to find where specific genes are located. Their next step is decoding the genetic sequence to find out how specific genes cause a particular disease.

Goldsmith predicts that by the end of this decade, hundreds of genetic tests linked to specific illnesses will be in the hands of primary care physicians. Within 12 to 15 years physicians will be able to do a comprehensive genetic assay — "a complete snapshot" — of a person's risk of developing an inherited disease.

Using Genetic Information
How we will use this tool — an instrument of "astonishing power" — troubles Goldsmith. "I'm wrestling with the question myself. Of the grandparents and parents in my and my wife's families, three have died of cancer. It's already fairly clear that we inherit genes — like the P53 tumor-suppressor genes — that protect us from cancer. If I found out I had a damaged P53 tumor-suppressor gene, what would I do with that information? What would I tell my children, and when, about their potential cancer risk?"

 

Insurance One option Goldsmith could consider is protecting his children from the financial consequences of his early death by purchasing additional life insurance at a comparative bargain. For at least a period of time, he believes, insurance companies will not have access to test results. Would society ever allow insurance companies to mandate that applicants submit to genetic tests in order to individually rate them? he wonders aloud. But in the next breath, he says, "I don't think there's a chance that we'll permit that to happen, and yet, if we don't, what happens to the actuarial basis for insurance? Insurance under the current ground rules has a very cloudy future."

Goldsmith thinks community rating will become the norm, whether it happens incrementally or quickly (as a result of health reform), and insurance companies will not be allowed to discriminate on the basis of preexisting genetic conditions. "By the time this armada of genetic tools is available, community rating is going to be pretty much essential."

Choices But beyond the insurance question lie more troubling issues: "the issues of free will and abortion and how risk averse our society is." Within about 10 years it will be possible to subject one fetal cell to a comprehensive genetic assay to identify the unborn child's inherited disease risk. "How are people going to cope with this information?" Goldsmith asks. "Will they be tempted to abort a child with a damaged tumor-suppressor gene?"

The technology to insert new genes into the body to correct for either inherited or acquired genetic damage will be available for some illnesses within five years, Goldsmith predicts, and could have as powerful an influence on disease as antibiotics have had. After decades of searching, researchers are closing in on the causes of cancer as a result of genetic research. "A picture of the disease's genetic and molecular roots has snapped into focus in the past three years."

Genetic therapies can alter either the germ line (what is reproduced in the gene pool) or somatic mutations (which are not necessarily inherited). Altering the germ line affects all subsequent generations, whereas correcting for somatic mutations changes only the individual's genetic makeup.

Goldsmith conveys a certain urgency about addressing ethical issues. "We are going to have a critical shortage of genetics counselors in a very short period of time, and the priesthood is going to have to become genetically literate."

Therapies for Chronic Disease
Genetic therapies, which promise to reduce morbidity and mortality from many conditions, further the advances against infectious disease already made in this century. "We have traded mortality from infectious disease for increases in life expectancy and rising mortality from chronic disease," Goldsmith notes.

Most of the diseases that bring people into hospitals today are chronic diseases that have genetic roots — heart disease, cancer, mental illness, degenerative diseases of the central nervous system such as Alzheimer's. "When you read in the newspapers that a firm genetic association with a particular illness has been established, you should really read two consequences," he says. "The first is the ability to predict with far greater precision than we can today the likelihood that an individual will develop that illness." Second, clues to the specific chain of events that leads to the disease are uncovered once it is clear that a genetic defect causes or is associated with that disease.

Healthcare Dilemma: Change or Continue?
Goldsmith predicts that the latter consequences will provide "a cornucopia of therapeutic options" for chronic diseases that will allow people to live longer. As a result, pressure on society is rising: Will we insist on healthcare policies that improve the health status of the elderly or continue current policies that favor treating the symptoms of acute illness but create an ever-lengthening period of disability?

Goldsmith hopes the country will opt for a healthcare system that "compresses morbidity" so that people have a long period of health followed by a short period of catastrophic decline. He deplores the "perverse" financing incentives that favor acute care over prevention. "Such incentives are inexcusable in an era of genetically based prediction."

Acute Care's Future
Continuing the acute care system as the "central architecture" of the twenty-first century will not be tenable, according to Goldsmith. "We won't need a million hospital beds; we will need an extensive cadre of community-based clinicians — physicians and nonphysicians — armed with an armada of new tools, as well as preventive therapies."

Reform proposals like the Catholic Health Association's, which stress integrated delivery networks, are a source of hope because they would replace an "obsolete architecture" of healthcare financing and delivery with an "architecture grounded in pushing resources out into neighborhoods." Goldsmith applauds the proposal's anticipation of a rearrangement of healthcare spending priorities so that keeping hospitals full is no longer at the top.

But he expects an evolutionary, rather than revolutionary, change in the system. "It's going to take a generation to change the goal structure and values of healthcare executives and practitioners. You can't expect people who have grown up in an acute care matrix to say, What I learned to do is no longer relevant.'"

An Exciting Future
In spite of frustration at the pace of change, Goldsmith is "tremendously excited" about the future of healthcare. "We are headed toward a point where we will have the tools to improve the health status of a population of people — to convert what were viewed as unavoidable acts of nature into something we can manage as a society." This ability will ultimately be more satisfying for healthcare managers and for sponsors, he believes. "To be able to engage communities in improving their own health status, and in avoiding catastrophes, resonates more with the values that brought them into healthcare."

Judy Cassidy

 

Copyright © 1994 by the Catholic Health Association of the United States
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