SOC/MED: Washington Post article calling for "Genome Commission"

Date: Sun Jul 09 2000 - 07:51:53 MDT

All the fanfare about completing the map of the human genome has now had the
inevitable response of calling forth voices demanding regulation. We need to
be prepared for one possible scenario in which there is a politically-driven
governmental rush to regulate, with each candidate and jurisdiction trying to
out-do the other in proclaiming that it has "taken steps" to cork the bottle
holding the genetic genie. It is a presidential election year here in the
States and this is an issue tailor-made for Al Gore's technocratic
tendencies. I think there's a real chance that the political process will
actually get AHEAD of the science and technology here:

Genes and Dangers From the Unknown
By Tom Delbanco
Sunday, July 9, 2000; Page B07

As the race to decipher the human genome ends its first phase, we are quite
properly amazed watching our genetic map unfold before our eyes. But it is
far too early to conclude that understanding our genetic substance will
trigger a leap forward in human "progress." One thing is certain: We are not
spending nearly enough time or money considering how society will cope with
what scientists are unleashing.

Darwin taught us that progress from survival of those organisms most fit
occurs over thousands of years, as nature weeds out weaknesses. Now we
threaten to change the human organism virtually all at once, without
affording the time to reach balance and harmony. As science fiction writers
love to speculate, we may even generate a war within our own bodies.

Might genetic interventions inadvertently trigger more trouble than success?
Look at the fine line between disaster and rescue that thalidomide
illustrates. In the past this drug disfigured newborns; now we hope it will
help with cancer and AIDS. Consider HIV therapy, how it alters cells and too
often induces resistance. Will genetically altered cells make good or bad
neighbors to those in adjoining tissues? Clinical investigators using
genetically engineered substances in Boston and Philadelphia have already
watched death come to patients before rescue.

Genetic knowledge will never abolish all disease and suffering, and Americans
don't like to address rationing explicitly. We already spend about 15 percent
of our gross domestic product on health care, and there is no way our
economic resources can keep pace with the new technologies. Virtually every
new diagnostic and therapeutic manipulation adds costs. The rush by
biotechnology companies to profit from the new genetic discoveries makes it
likely that the new maneuvers will be the most expensive of all, and rarely
do new discoveries replace existing expensive tests and interventions.

Who will have access to the new technologies and who won't? Will we end up
further widening the gap between rich and poor? When the United States has 45
million people without health insurance and many more who can't afford
therapies already proven worthwhile, how can we--and should we--find the
money for new genetic therapies that will cost a fortune?

Consider how poorly our society is dealing with the elderly, the
beneficiaries of extended life expectancy that scientific, behavioral and
social changes have already provided. As doctors urge their patients to throw
away cigarettes, we rarely pause to take stock of the paradox that if
everyone were to stop smoking tomorrow, the burden on society from increased
longevity could prove enormous. Take that thought a step further. If genetic
therapies that increase life expectancy arrived tomorrow, they might bankrupt
our health care system or siphon vital resources away from education, human
services and other essential functions of society. Are we ready to deal with
this kind of success?

Will mapping genes help further discrimination and loss of privacy? How will
society address genetic tests for health insurance, jobs and life insurance?
What role is there for the marketplace vs. governmental regulation? And
consider the next step: full-blown eugenics. In today's narcissistic society,
people aspire increasingly to their notion of perfection: the cherished
height, gender, skin color. How will we build moral consensus, a code that
stymies those who would create a master race or a Frankenstein?

Think about the anguish of those deciding whether to learn if they or their
children have genes that forecast Huntington's disease, or increase the
likelihood of breast cancer or dementia. Reflect on the uncertainties that
already attend the relatively primitive genetic tests that amniocentesis
offers the pregnant woman and multiply those dilemmas a thousand fold.

How will we feel when fantasies of genetic perfection are destroyed? May we
not end up with loss of ambition, depression or even a shattered persona?
Learning about one's genetic map may induce far more pain than pleasure.

What about responsibility, voluntary behaviors, the old-fashioned idea of
choosing right over wrong? Will we rush to "blame the gene" for every human
failure or transgression? Will genetic determinism weaken our will? Will it
stop our search for mystery, community, art, spirituality and the deepest
pleasures? Will the genetic map replace the dream?

The human quest for knowledge will never abate, and we must mobilize quickly
to address the consequences of what we learn. Our government, universities,
industry, communities, schools, clergy, ethicists and each of us must prepare
for some exceedingly tough decisions, lest we end up expressing ex-post-facto
doubts like those of the Los Alamos physicists who, having detonated an
atomic bomb, looked back in horror at what they had wrought.

It's time to build a national "Genome Commission" that is well supported,
broadly representative and has strong bipartisan teeth, analogous to the
Atomic Energy Commission, which helped us live with the consequences of
splitting the atom. We should also form an international counterpart that is
truly global in its reach.

For every dollar we spend on the genome project and the attendant frantic
race for discovery, we should spend an equal amount to prepare for what we
find. The rush for that kind of enlightenment has hardly begun.

The writer is Koplow-Tullis professor of general medicine and primary care at
Harvard Medical School and the Beth Israel Deaconess Medical Center.

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