Prepared Testimony of Daniel Callahan

 My name is Daniel Callahan, and I am the Director of International Programs for The Hastings Center
in Garrison, New York, and a Senior Fellow at the Harvard Medical School.
I want to talk about biotechnology and the public Interest. By that topic I mean to
raise this question: how can biotechnology, full of promise for human welfare, be developed in a
way that will potentially benefit everyone,, not simply those of us who might Individually be helped or
might gain a financial benefit? It is proper and Important to ask this question and to pursue it with all the
creativity and rigor that the scientific possibilities have elicited. A failure to do so might introduce both
some biological hazards, always possible with new technological applications, and the social hazard that
the potential human benefits will not fully be realized or be widely and fairly distributed. Those like
myself, professionally focused on biomedical ethics, will surely have much to say about all this. But we
will be commenting from the sidelines. It is far more important that the scientists carrying out the
research, and those who find or supply the money to support it, take the lead in fostering the Importance
of e public interest perspective. One reason to do so is simply that those two groups have been the most
articulate and persuasive in touting the Immense possibilities of biotechnology to contribute to a better life
for human beings. They then have an obligation, it seems to me, to do all they can to make certain that
happens. The other reason turns o n obligation as well: the duty of the Inventors and funders of
biotechnology to take full social responsibility for the outcome, whether for good or UL From the
perspective of ethics and the history of the biological sciences,, two features of biotechnology are
particularly important. One of them concerns the type o intervention into, and manipulation of, nature that
is at stake. The other Is the difficult gauging the long-term consequences of biotechnology. Human beings
have always worked to change nature,, partly out of a need for self-protection - think here of the
development of vaccines to prevent disease, or pesticides to save crops - and partly. out of a desire to
better their lot, of which the automobiles, computers, and airplanes offer obvious examples.
Biotechnology, however, works to change nature from the Inside, altering genes and changing the nature
of organisms - and gene therapy offers an example of such alteration. But as hard as It might have been to
foresee the impact of automobiles on our lives - if anyone a century ago had tried to do - it is even harder
to guess what the effects of modifying agricultural products or human traits will be. It is common enough
to speculate about the possible benefits of such developments. It is no less necessary to speculate about
the potential harms or, perhaps more likely, the potential mix of harms and benefits which is one of the
vexing ways nature often responds to human intervention. There have been two responses at the extreme
to such speculations. One of them has been to see ethical worries and free-floating anxieties about the
future simply as an obstacle to progress, a kind of needless hand-wringing that should be put aside in the
name of a bold and visionary science. The other has been to see blotechnological manipulations of nature
as a way either of Illegitimately 'playing God"; or, in its more secular version, as a dangerous tinkering
with nature - that nature which has its own evolutionary good reasons for the way things are, including
illness, disease, and bugs that eat up the crops. The first response takes the potential benefits seriously,
the potential hazards not at all. The second response assumes a nature that never was and never will be
without change and alteration, some of them from its own casual evolutionary forces and some from
human Interventions. "What's the big deal anyway?" Is the way it is often put. Neither of these responses
is adequate or sufficiently balanced. Nature is surely open to human Intervention,, even If we are not sure
how far that can go. We would not be here at all If It were not. ' If we do not know where the boundaries
of danger lie with blotechnological interventions, we need not be excessively fearful as we push forward
on the frontier of knowledge. At the same time It would be foolish to adopt a stance of careless
recklessness, thinking we can get away with anything, or that if we do something .harmful more
technology can undo the harm. In Europe what has been called the 'precautionary principle" has gained a
following: move slowly and carefully and thoughtfully, making as certain as possible In advance that
blotechnological Innovations will not have harmful consequences. Among the consequences most to be
feared are three: --that irreversible genetic or other biological changes will be introduce to nature, our own
human nature or that of animals and plant life --that damaging and difficult to control social changes will
be set afoot, decisively altering, perhaps, parenthood and the family --that changes hostile to our human
dignity and important values will be Insinuated into the cultural fabric of our lives and our societies,
suggesting that we are no more than complex machines, to be played with as we see fit. Yet a perspective
that begins with fear or anxiety will not by itself offer sufficient guidance, nor is it likely to hold up in the
face of insistent individual wants and demands for this or that piece of supposed progress - such as
cloning a human being - or In the face of commercial allurements, which have been known on more
occasions than one to turn our heads. I would like to offer Instead two positive approaches to the ethical
and social challenges of biotechnology. One of them is the need to work toward a sustainable medicine
and a sustainable agriculture in the future. The other Is to pursue broad population benefits for society,
not simply the benefit of individuals. By a "sustainable" medicine and agriculture I mean the aspiration
that those two enormously important institutions, fundamentally necessary to our survivor and well being,
will in the future remain affordable and equitable. Almost everywhere In the world medicine and the
health care systems that provide. it to people are caught in an increasingly difficult dilemma: the growing
benefits of medicine are now clashing with the costs of that medicine. The reasons for that dilemma are
not hard to discern. There is the aging of populations, now well advanced in the developed nations, but
now appearing as well in the developing nations. There is the cost of the technological Innovations
constantly being introduced into health care systems. It is generally estimated that somewhere between
30-40% of Increased costs can be traced to those technologies. And then there is increased public
demand. None of us want to get sick or to die, even though that is our biological fate, and we respond
with enthusiasm to technologies that lengthen our life and improve its quality. To further complicate
matters, the principal burdens upon aging societies are chronic illness and disability. For the most part,
those conditions are not easy to cure, as the century-old war against cancer shows, but are Instead mainly
amenable to amelioration and marginal Improvements. Those improvements are surely welcome but they
amount to an expensive form of trench warfare, where millions of dollars are spent for every Inch of
health gained. A sustainable medicine needs the help of a biotechnology that can effectively cope with
chronic disease and do so in an affordable way. Pharmaceuticals that cost in the thousands of dollars a
year for patient care may be affordable when the number of elderly is still manageable. But that will be
Insupportable when the number and proportion of elderly double and triple, as they are projected to do
over the next twenty to forty years" with the greatest increase coming with those over 85. Our. society
already has trouble paying for the expensive AZT 'cocktail" for those afflicted with HIV disease. Imagine
the problem we will have if a comparably effective cocktail Is developed for Alzheimer's Disease with its
estimated four million sufferers. No doubt a good market for expensive drugs can be found in affluent
countries even if not everyone can pay for those drugs. It would be a shame, however, and a great failure
of biotechnology if it could not do better than that. We are all, rich and poor, subject to the Ills and
failings of the body and the mind. An equitable provision of health care requires I an affordable medicine.
Without such equity there Is a heavy economic and social burden of disease, with grave consequences for
economic productivity and social well-being. Equity is not a luxury. It Is a necessity in modem societies.
An affordable medicine is a necessity to sustain that equity. A biotechnology that can find cures for
disease, that can find ways to reduce disability, that can better understand the genetic basis of disease and
do something about it, will make a grand and historic contribution to an improved human life. If it can
figure how to do this In a way that societies can comfortably pay r, the gain will positively be magnificent.
And If It falls to do so, some of us will be gainers but most of us will be losers. A comparable challenge
can be found in the production of food. While world population growth his slowed in recent years, it is
still a reality and will remain so for decades to come. There will be more and more mouths to feed. At the
same time, the available land for viable agriculture steadily diminishes, forever captured by urban and
suburban sprawl. Biotechnology has become a necessity in order to provide the wherewithal for a
sustainable agriculture. In this case that means not simply an affordable agriculture so that everyone on
the planet has enough to eat, but also an agriculture that can sustain itself in the face of more people and
less land. That daunting requirement can only be met by a constantly improved, even ingenious
agriculture, precisely of a kind that biotechnology can provide. Yet again, if the cost of this agriculture
renders It unaffordable to poor countries, or if It is not developed with their needs in mind, then there will
be the loss of a critical opportunity - and the likely loss of many lives as well. While It is only fair and
reasonable that those companies that have the nerve and the capital to pursue enhanced food and
Improved animal production reap a decent return on their Investment,, It will not do at all for them to
have a stranglehold on the means of production. You and I can live with, and enjoy.. food produced on
far distant and massive Industrial farms, but then most of us are not subsistence farmers as so many poor
people are. The latter need to be free as possible to produce what they need to live on. A sustainable
agriculture, affordable and universally available, Is the only kind of agriculture the world can morally
afford. The logic of sustainability is a population logic. It recognizes that there is a great difference
between individual benefit and population benefit. Modem scientific medicine has been very good at
providing individual benefit but far less skilled In providing population benefit. The fact that perhaps no
more than 30%-40% of the great Increase in life expectancy during the 20th century in the United States -
some 35 years since 1900 - can be traced to medical gains tells the real story here. Most of the gain has
come from public health Improvements, from better diets and life styles, and from higher income and
greater education. It is those gains that most contribute to a sustainable health care system. They did so in
the past and they will do so In the future. The number of people who make it to age 90 by frequenting
intensive care units is very small. Most of them have been able to avoid doctors,, hospital and medicine
almost altogether. That Is what good population health means. Many of the advertised benefits of
biotechnology are individual benefits: possible cures for dread disease, possible new ways of providing
needed organs (perhaps from animals), possibly more commercially efficient means of food production.
But it will be the contribution of biotechnology to an overall improvement In human health - not this or
that individual miracle that will be the most telling story. The question Is not whether some of us might
eat better in the future. It is whether all of us can eat better. Our private Interest is that each of us will live
long and healthy lives, and we will look to biotechnology to help us do this. But the public interest lies In
the benefits biotechnology can bring to whole societies and whole populations. Those benefits will not
appear unless biotechnology can keep Its contributions safe, which will require Imagination, caution, and
foresight. Nor will they appear if biotechnology can not keep its products economically affordable. That
will require economic restraint, perhaps some sacrifice of profit, but most of all a scientific and venture
capitalist imagination that Is fully ambitious to promote everyone's good. Why not?