In , million people died. Violence killed fewer than one million ofthem; famine contributed to about six million deaths; more than million died of some form of disease.1 Many of these illnesses were theresult primarily of old age and may have been unpreventable. That isunlikely to be true, however, of over a million deaths from malaria, nearlytwo million deaths from tuberculosis, nearly three million deaths fromAIDS, and over four million deaths from respiratory disease.2
To suggest that many of these deaths could have been prevented
might be to make one of two distinct claims. First, in the current state ofour knowledge, available techniques exist for responding to the diseasesmentioned above and for saving those who suffered from them. Second,these are scourges that we might hope to overcome in the course offuture biomedical research. Part of the world’s burden of disease couldhave been alleviated if those who died had had access to drugs or treat-ments routinely available to others in different places. Another partcould have been lightened if there had been more thoroughgoing effortsto discover methods of combating disease, methods that the actualcourse of biomedical research has so far not yet found.
We are extremely grateful to two anonymous referees whose helpful comments on
earlier versions have enabled us to make substantial improvements; we also wish to thankthe editors for their valuable suggestions. We also note that the views expressed here arethe authors’ own and do not reflect the position of the National Institutes of Health or ofthe Department of Health and Human Services.
. C.J.L. Murray and A. Lopez “Evidence-Based Health Policy Lessons from the Global
Burden of Disease Study,” Science (): –.
. For data see the Full Report: World Health Report (Geneva: World Health
Organization, -), not only for but for other recent years as well.
by Blackwell Publishing, Inc. Philosophy & Public Affairs , no. Global Health and the Scientific Research Agenda
Our aim is to understand the relation between the ways that people
die and the kinds of weapons against disease that medicine has acquiredand that it seeks to extend. We shall try to give substance to the familiarview that the diseases that contribute to the global burden of death arenot well-aligned with the dominant directions in biomedical research. This misalignment, we claim, underwrites an obligation for individualresearchers to reorient their inquiries and for the institutions thatsupport research to alter their priorities. We begin with some facts aboutthe worldwide distribution of disease and the strategies for treatingthose afflicted.
In the poorest nations, many people die prematurely from the diseaseswe have mentioned. Before we think about possibilities for new tech-nologies, it is worth asking if we could make better use of the knowledgealready available. Many nations use existing biomedical techniques toprovide effective control of tuberculosis and similar diseases. But mostof the countries where malaria, tuberculosis, respiratory infections, diar-rhea, parasitic infestations, and so forth are rampant owe their troublenot to the lack of twenty-first century medical technology but to theabsence of late nineteenth century sanitation. For example, one of themost historically successful strategies for malaria control is to eliminatestagnant water sources where mosquitoes breed. Even with emergingmalarial resistance to drugs, it is certain that the burden of the diseasecould be greatly reduced by drainage projects combined with a morepervasive and effective system of public health in the affected countries.
Tuberculosis is a similar case. Inconsistent use of antibiotics has
contributed to the spread of drug-resistant tuberculosis, but even mostresistant strains can be beaten by a public health system that appliesexisting therapies quickly and thoroughly. As matters stand, millions oftuberculosis (TB) patients receive incomplete courses of drugs, bringingtemporary respite at the cost of giving the TB bacillus an opportunity toevolve antibiotic resistance.3 If well-funded, trained clinicians reached
. The classic example is Russia after the collapse of the Soviet system, where
overcrowded prisons provided the tuberculosis bacillus with extraordinary new ecologicalpossibilities. See Laurie Garrett, Betrayal of Trust (New York: Oxford University Press, ),p. .
all these patients, the emergence of resistance could be slowed and thevast majority of tuberculosis deaths prevented without a single newtechnological idea.
It is immediately obvious, however, that making existing technologies
more broadly accessible is far from simple. In malaria, Africa has a pro-found source of suffering that could be greatly relieved with clinical carethat employs only procedures that are routine elsewhere (the courses ofantibiotics that are administered in affluent countries); in tuberculosis,the Russian federation faces the same situation. But the infrastructureneeded to supply that care no longer exists in the regions in question;neither does the funding nor political will to build it.4 For outsiders toreplace this infrastructure—building clinics, training physicians andnurses, supplying policy, and doing all of this for an indefinite period oftime—amounts to taking responsibility for the public health of thenations involved. Such intervention may be an enormously valuableundertaking, but it is also very expensive and politically delicate. Devel-oping new ways to fight tuberculosis is a difficult scientific problem, butrebuilding the former USSR’s tuberculosis control programs may be aneven harder political one.
It would thus be an error to think that, simply because a strategy for
combating a disease is available in a particular, privileged, region of theworld, medical research on alternative strategies is pointless. When thetask of exporting the technology to other contexts is beset with largesocio-political obstacles, the best means of bringing relief may be to findtreatment better adapted to those contexts. Thus, when we consider biomedical research, we’ll want to consider two sorts of goals: most obvi-ously, ways of addressing diseases for which no treatment is availableanywhere, but also new methods for fighting diseases for which the onlyavailable therapies cannot be exported to the contexts in which many ofthe afflicted find themselves. In other words, one can’t simply declare that
. Garrett’s discussion of an Ebola virus outbreak in Kwikwit, Zaire (Betrayal of Trust,
ch. ) is especially pertinent here. She describes vividly how the public health network inZaire was unable to provide the basic resources western medicine takes for granted—cleanwater and electricity were both lacking at the Kwikwit hospital. Thanks to the efforts of agroup of doctors, including Zairois, representatives from the Center for Disease Controland members of Médicins sans Frontières, what might have been a devastating epidemicwas stopped. A few years later, however, the hospital was in the same appalling state inwhich the MSF-CDC team had found it. Global Health and the Scientific Research Agendaa disease is sufficiently researched just because it no longer has an impacton the affluent world.
Let’s now turn to the relationship between the ways that biomedical
research is currently directed and the global burden of disease. Best esti-mates are that the total spent on health research of any kind is around$ billion.5 The National Institutes of Health (NIH) alone will spendalmost all of a $ billion budget on medical research next year. Thepharmaceutical industry, overwhelmingly based either in the UnitedStates or the European Union, will spend about $ billion. In all, lessthan $ billion of funding originates from the poorer parts of the world—Africa, the Russian Federation, the rest of Asia, and South and LatinAmerica.6
One rather obvious way to measure the alignment between disease
burden and the directions of biomedical research is to compare theamount of money invested in a disease with the proportion of the totalbudget ($ billion) that a disease would receive if the allotment weremade strictly according to the disease’s fraction of the total number ofdeaths due to disease (approximately million). We’ll define a disease’sfair share as the product of the number of deaths attributable to thedisease and $ billion, divided by million.7 Malaria kills one millionpeople a year—including a high proportion of children—so its fair shareis $. billion; in , the actual figure spent on malarial research wasabout $ million.8 Tuberculosis is responsible for two million deathseach year, and so its fair share would be $. billion; high estimates arethat it received $ million in .9 (So if malaria sufferers historicallyreceive only a twentieth of the scientific attention their plight merits,
. Sheila Davies, / Report on Health Research (Geneva: Global Forum for
. Monitoring Financial Flows for Health Research (Geneva: Global Forum for Health
. This notion plainly construes disease burden in terms of deaths, and so ignores (or,
at least, underrepresents) those diseases that give rise to long periods of pain and disabil-ity; we shall come to terms with this point below.
. J. Anderson, M. MacLean, and C. Davies, “Malaria Research: An Audit of Interna-
tional Activity,” Wellcome Trust Unit for Policy Research in Science and Medicine, .
. C. Michaud, C.J.L. Murray, and B. R. Bloom, “Burden of Disease—Implications for
Future Research,” Journal of the American Medical Association, (): –. Fundinghas surely increased during the s, especially with the knowledge that strains of TBresistant to the major antibiotics were surfacing in New York City. But even if funding hastripled or quadrupled, it is still miniscule compared to the scope of the problem.
victims of tuberculosis may only get a hundredth.) The single largestinfectious cause of death is respiratory infection, killing four millionpeople per year; the third largest cause is the general category of diar-rhoeal diseases, which take . million lives a year. Their fair shareswould be nearly $ billion and $ billion, respectively; in fact, the esti-mates award them about $ million.10
Little imagination is needed to come up with an explanation for the
disparities we have noted. Research dollars come almost entirely fromthe wealthy parts of the world, and the suffering from malaria, tubercu-losis, and a large number of other infectious agents happens elsewhere. Nine hundred thousand of the . million who die from malaria in anygiven year are in sub-Saharan Africa; malarial death rates in the UnitedStates are negligible. In , tuberculosis killed between . and .million people worldwide, with the best estimate falling near .million.11 Over one million of these deaths occurred in six developingcountries: India, China, Indonesia, Pakistan, Bangladesh, and Nigeria; by contrast, in the United States tuberculosis annually kills about people. In all of Europe, tuberculosis takes an annual toll of about,, which is a tiny fraction of the total even before one considersthat most of these deaths occur in the poorer nations of Eastern Europe,particularly in the Russian Federation. Wealthier nations typically havedeath rates measured in the hundreds.12
Tuberculosis and malaria are only the two clearest examples of a
problem that pervades disease research. The most succinct way ofdescribing this is the “/ gap”: percent of humanity’s burden ofdisease receives only percent of the world’s health researchresources.13 The skewed distribution favors the diseases of the affluentworld—cancer, heart disease, diabetes. How much of the resources
. Ibid. These causes of death may not rate the most intense research attention either
because they already have good low-tech solutions (e.g., oral rehydration therapy worksfor some diarrheas) or because they cluster many different diseases, each taking a rela-tively small toll. Thus the marginal rate of return for them may not be as high as it is for asingle major killer, such as malaria or tuberculosis. Interestingly, the second objectionapplies to cancer research.
. Full Report: World Health Report . . Christopher Dye et al., “Global Burden of Tuberculosis,” Journal of the AmericanMedical Association (): –.
. Report of the Ad Hoc Committee on Health Research Relating to Future Inter-vention Options (Geneva: World Health Organization). Global Health and the Scientific Research Agenda
aimed at these diseases could be diverted without appreciable loss is aserious empirical question; we suspect (but don’t claim to know) thatsome diversion would be possible without significantly lessening thechances of success with respect to these diseases. The cost of the currentbias is that vaccines and new antibiotics that would make a tremendousdifference to quality of life in the nonaffluent world continue to go unde-veloped, and we are confident that there will be a modification of theexisting distribution in which the expected gains from research into newvaccines and antibiotics outweigh any expected losses from the supportwithdrawn from cancer, heart disease, and so forth.14
We’ve introduced the concept of a disease’s fair share of research
resources, noted the discrepancy between the fair share (as we define it)and the actual amount assigned to those diseases that mainly afflictpeople in the poorest parts of the world, and have offered an obviousexplanation. But there are two obvious objections to the analysis pre-sented so far, both of which would charge our talk of “fair share” withpersuasive definition. The first would emphasize that the direction ofscientific research cannot simply be a matter of the urgency of the prac-tical problems; the second would question our measure of the globaldisease burden. We consider each criticism in turn.
There are sometimes good reasons for giving a disease more than its
proportional share of research funds on the grounds that the availableavenues for investigating it are more plentiful or more easily traversedthan routes for tackling other diseases. Yet if a disease is both particu-larly deadly and appears vulnerable to research into new forms of treat-ment or prevention, it would seem wrong to shortchange it. We’ll nowargue that both malaria and tuberculosis are promising targets of
. If our conjecture here is incorrect, then the right strategy might be to increase the
total amount of support given to biomedical research to allow both for the retention of theadvantages of present approaches to affluent-world diseases, and for the additional ben-efits of attention to the diseases that afflict poor nations. We would also note that somefunding—and it’s hard to estimate just how much—goes to develop “lifestyle drugs,” sub-stances meant to alter the user’s body in ways not intended to cure disease. Attempts toovercome impotence, halt hair loss, reduce obesity, and remove wrinkles attract hundredsof millions of research dollars each year. These problems are trivial in comparison with thesuffering wreaked by the deadly diseases of the poor world. (See Ken Silverstein, “Millionsfor Viagra, Pennies for the Poor,” The Nation, July , , pp. –.) Since our primaryconcern in this article will be with public funding of science, rather than with biophar-maceutical research, we shall not press this point.
research, so that the proportionality approach that underlies ourconcept of fair share cannot be rejected on the suggested basis.
The malarial parasite implicated in most cases (Plasmodium falci-parans) is a complex organism with a complex life cycle that could beinterrupted in many ways: it is potentially vulnerable to antibiotics, tocontrol of its animal vector, and to vaccines. Tuberculosis is also apromising subject for research, both because of the chance of findingnew antibiotics and because of possibilities for vaccines. As we’vealready noted, an important role for technology is to provide ways forfighting disease, even in contexts in which the public health infrastruc-ture has broken down. New drugs that circumvent resistance can makean important reduction in the short term, although it will be crucial toensure that the application of those drugs now doesn’t sacrifice chancesfor a more efficacious intervention later—it would be tragic if, becauseof the public health deficiencies, new antibiotics were quickly to gener-ate new resistant strains. Our greatest hope is that many under-researched diseases, including malaria and tuberculosis, might one daybe controlled with vaccines, and we shall focus on the prospects forvaccine development.
An ideal vaccine—one that is effective in a single dose—can be used
to control, or even eradicate, a disease everywhere in the world. Thesmallpox eradication campaign carried out in the s attests suffi-ciently to the enormous potential of vaccines: for a cost of less than abillion of today’s dollars, an eleven-year program completely wiped outa disease that was highly infectious and killed two million people eachyear. Had smallpox eradication never taken place, that disease wouldhave killed tens of millions of people and would now be doing damagecomparable to that done by AIDS, malaria, or tuberculosis. Instead, it issimply gone, even in parts of the world where other forms of publichealth are in tatters.15
The molecular revolution in biology and biomedicine offers the
potential for leaps forward in both drug and vaccine design. Its mostvisible symbol—the Human Genome Project—is often seen byresearchers as a prelude to advances in basic biology (increased abilitiesto map and sequence genes and to engage in comparative analysis of the functions of genes in different organisms are likely to enhance our
. Laurie Garrett, The Coming Plague (New York: Penguin, ), pp. –. Global Health and the Scientific Research Agenda
understanding of intracellular metabolism and organismal develop-ment); the public, and some outspoken medical researchers, envisagethe possibility of new techniques for addressing the major diseases of the affluent world—cancer, of course, hypertension, diabetes,Alzheimer’s, bipolar depression, and so forth. Yet the ability to sequencerapidly, originally demonstrated on bacterial genomes, also enables usto analyze the tricks of major pathogens. In principle, one can map andsequence the genome, hunt for proteins that are exposed on the surfaceof the pathogen, design a harmless vehicle that will stimulate the production of antibodies that would neutralize the pathogen, and soprepare the immune system against its attack. There could easily be a huge (and not desperately expensive) project to analyze pathogengenomes and to generate potential vaccines (which could, at least some-times, be tested quite rigorously on animal models).
High technology efforts wouldn’t always work, of course. The example
of AIDS—one of the few infectious diseases threatening enough to theaffluent world to attract billions of research dollars—has been the targetof a very intensive research effort. Not only the price and difficulty of distributing drugs, along with fears of HIV’s developing drug resistance,lead many researchers to believe that the only long-term solution toAIDS will be a vaccine. The fact that our detailed knowledge of the HIVgenome hasn’t yet translated into success in making a vaccine demon-strates that there’s no guarantee that sequencing pathogens will deliverthe goods. But one might also conclude, from the half-century that haselapsed since the discovery of the molecular basis of sickle-cell anemia,that molecular techniques are hopeless in the battle against geneticdisease. To use an analogy one of us has deployed elsewhere, we shouldthink of the pathogen sequencing project as giving us a vast number oftickets in a number of lotteries; we can’t predict where we’ll be success-ful, and how big the prizes we’ll win, but we’d be profoundly unlucky tocome up completely empty.16
In the case of malaria, several vaccine candidates are at or near Phase
I human trials, but it’s estimated that a useful malaria vaccine is at least
. See Philip Kitcher, The Lives to Come: The Genetic Revolution and Human Possibil-ities (New York: Simon & Schuster, ). Our view is that the chances are actually signifi-cantly higher from the pathogen sequencing/vaccine development project than from thestandard ways of applying information from the Human Genome Project.
ten years away.17 This is probably optimistic. Without more funding, it’slikely that promising leads won’t be explored, so that the ten years willballoon into twenty or more. In the case of tuberculosis, vaccine researchis hardly off the ground. Because of the high expense of treating thedisease, and its propensity to become drug resistant, a tuberculosisvaccine is particularly desirable. But tuberculosis vaccine researchreceives even less funding than malaria vaccine research, and vaccinedevelopment has lagged accordingly. No new tuberculosis vaccines arein clinical trials today.18 Thanks largely to the recent sequencing of theTB bacillus genome, promising new avenues for research are open, butthe research is only in the earliest stages, and the funding needed tocarry it out with a serious chance of success isn’t yet available. Indeed,at current levels of funding, a vaccine may never be developed.
We’ve tried to defuse one line of objection, one that stresses the need
to take research promise into account in the apportionment of funding. We now turn to the second, which charges that we’ve operated with toocrude a measure of suffering by concentrating on numbers of deaths. Itwould be correct to note the possibility that some diseases inflict moresuffering for a given mortality rate than do others: a disease that killssome number of people late in life may cause much less suffering thanone that kills the same number of people but strikes earlier and inflictslong periods of disability in many nonfatal cases. Extensive work hasbeen done, largely by the World Health Organization, so that these con-siderations can figure in a more nuanced calculation of the burden ofdisease.
Instead of simply assuming that mortality rates correspond directly to
the amount of suffering, the most common practice has been to intro-duce a unit known as the DALY (Disability-Adjusted-Life-Year). The fun-damental idea is that we should look for the number of years of life lostbecause of the disease. Life is lost not simply through early mortality butalso through the discounted value of years of life lived with disability,where the discounting is based on widely shared views about the valueone would attribute to a future year of one’s life in the diseased state as
. “Quest for Malaria Vaccine Revs Up, But Much Work Remains,” Bulletin of the WHO
. There’s an old vaccine, BCG, that has been in use for over seventy years. It can
provide children with some protection against some strains. For the most prevalent formof tuberculosis, adult pulmonary tuberculosis, it’s quite useless. Global Health and the Scientific Research Agenda
opposed to the value one would assign to a disease-free future year. Asthe idea is developed, there are two main assumptions, one egalitarianand the other age-inegalitarian. The egalitarian assumption takes a yearof human life to be of equal value regardless of location, race, socialbackground, or level of education, and also incorporates the claim thatdeath is premature if it occurs before a standard of . years for womenand years for men. The age-inegalitarian assumption does place a different value on years of life at different stages of a human being’s existence: initially, the value of a year rises rapidly with age, peaking inthe mid-twenties, and thereafter gradually declines to about a third ofits maximum value by the age of . This assumption is explicitly basedon studies of how people actually value different stages of human life;part of its rationale is the idea that adults of the most valued ages canmake the greatest contributions to their societies and to the well-beingof their dependents.19
We take the egalitarian assumption to be fully defensible, and, in par-
ticular, we regard objections to a uniform standard of premature deathas ungrounded. An obvious worry is that the egalitarian assumption sup-poses that diseases that strike well after the end of the usual lifespan ofa human being in the non-affluent world exact a large number of DALYs. Were we to revise the DALY measurement to incorporate the expectedlifespan in particular regions, however, then we’d already be acquiescingin a particular burden of disease as the norm for the inhabitants of thoseregions, writing off a portion of their suffering as something that didn’tcount. Affluent people who view it as a hardship to be denied health,even in their seventies, have no reason to consider a loss of life—lifeunencumbered by disability, recall—unimportant in someone else. Ifpeople in poorer parts of the world can’t expect long and active lives, thatdoesn’t make it less bad for them not to have them; indeed, as we’ve sug-gested, that expectation itself represents part of the burden of diseasethat afflicts them.20
. C. Michaud, “The Global Burden of Diseaes and Injuries in ,” InternationalSocial Science Journal (): –.
. We suspect that those inclined to make the objection we’ve just briefly discussed
would have argued, in an earlier day, that the deaths of slum-dwellers or coal miners intheir own societies couldn’t be considered premature because, after all, they lived as longas they had any right to expect. We hope that noting the parallel will remove the urge tomake either complaint.
We’re far less confident about the age-inegalitarian assumption. For
present purposes, however, we don’t need to resolve the issues that itraises. Unlike the commitment to a uniform standard of prematuredeath, the age-inegalitarian assumption doesn’t increase the DALYsassociated with diseases that afflict poor nations.
Our earlier conclusion was that, when human suffering is measured
by raw mortality rates, the distribution of biomedical research is skewedwith respect to the distribution of suffering. How do things stand whenwe replace mortality rates with DALYs lost? Roughly the same. Tubercu-losis and malaria continue to exact the majority of their cost in the non-affluent world, and the harm they do relative to other causes isapproximately the same as on our earlier (mortality-based) estimate. Tuberculosis causes million out of million deaths—slightly less than percent of deaths; it costs about . percent of DALYs, a small reduc-tion but by no means enough to eradicate the spectacular inadequacyof tuberculosis research funding. Malaria maintains the same signifi-cance as before, moving from causing about percent of deaths to beingresponsible for . percent of DALY loss. In these cases the two mostobvious ways of estimating disease burden yield the same conclusion:research investments and global disease burden are mismatched, andmatters are no different when we turn to respiratory disease or diarrhea. Interestingly, a DALY analysis does show new diseases of poor regionsthat attract very little research attention—most prominently those parasitic infestations that do not kill but produce blindness or severelyimpaired mobility. A forceful example is onchocerciasis, also known asriver blindness. This African infectious disease slowly blinds its victimswithout killing them; the WHO’s statistical analysis of its effects there-fore shows a negligible number of deaths but an annual loss of over onemillion DALYs.21
It’s worth noting that we’ve focused only on the immediate costs of
disease in the poor parts of the world. In our judgment, the consequencesof tuberculosis, malaria, respiratory infections, diarrhea, and their ilk areso economically expensive that the world would be richer and morepolitically stable if we could eradicate them. Economists have estimatedthat malaria costs sub-Saharan Africa at least $. billion a year.22 In fact,
. Full Report: World Health Report . . D. S. Shepard, M. B. Ettling, U. Brinkmann, and R. Sauerborn. “The Economic Cost
of Malaria in Africa,” Tropical Medicine and Parasitology (): –. Global Health and the Scientific Research Agenda
the total burden may be higher in that nations with endemic malariahave economic growth slowed by . percent per year, suggesting that theeconomy of Africa might be larger by a third had malaria been wiped outtwo decades ago.23 Effective technology for eliminating malaria in Africamight thus serve as a basis for ameliorating other forms of suffering. Plainly, if such socio-economic considerations were incorporated into arefined conception of a disease’s fair share, they would only increase thegap that divides fair share from actual expenditure.
Before we consider the possibility that the misalignment grounds an
obligation to change the ways that research is funded in the affluentworld (which is, after all, where research happens), we’ll close thissection with a quick look at the ways that resources are actually divided. The funding for science that comes out of biopharmaceutical businessroughly matches the funding provided by government. Each of the tenlargest drug companies has, in theory, the capacity to direct in excess ofa billion dollars a year to any biomedical research problem.24 In total, theannual research and development expenditure of the internationalpharmaceutical community is estimated at $ billion. Each year, thelion’s share of drug companies’ resources is directed toward the mostprofitable projects they can find, and the resulting research agenda isdramatically imbalanced. Drug companies aspire to revenues of arounda billion dollars a year for a single drug. In the case of tuberculosis, forexample, there’s no wealthy market for any new drug, so the profits areunavailable, and it’s hardly surprising that there are no such drugs in thepipeline of any major company. Over twelve hundred new drugs weredeveloped between and , but only thirteen were aimed specifi-cally at tropical diseases.25
Plainly, the market imposes constraints on drug research; even in a
merciless market, however, some corporate idealism is possible. Merckmaintains a vaccine division (the only one in the major drug companies)despite its lower profitability relative to other projects. In response topolitical pressure, Merck also has also invested modest resources inadapting a veterinary drug, Ivermectin, for combating a form of riverblindness—which infects million people in the world today and has
. J. L. Gallup and J. D. Sachs, “The Economic Burden of Malaria,” American Journalof Tropical Medicine and Hygiene (): –.
. Pfizer, currently the largest drug company, spends $ billion a year on research. . See Silverstein, “Millions for Viagra.”
blinded , of them, almost all in Africa.26 Merck donates the drugto a project (led by WHO and the World Bank). Investors haven’t pun-ished the company for these efforts, partly because they’re undertakenon not too large a scale, and partly because they bring public relationsbenefits. (The drug, Mectizan, features both in Merck’s own promotionalmaterial and in press coverage of the ethical stances of drug companies.)
Government funding of biomedical research is virtually entirely the
province of the NIH, which, as already noted, will distribute about $billion in research funds in . The NIH clearly displays the / gap. Out of the $ billion, $. billion are allocated to cancer research, $.billion to the National Heart, Lung, and Blood Institute, $. billion to the National Institute of Diabetes and Digestive and Kidney Diseases,and $. billion to the National Institute of Neurological Disorders andStrokes. In total, $. billion, or just over half, of the NIH budget goes todepartments that are clearly oriented toward solving only affluent-worldproblems.27 The remaining funds go to departments that might be ori-ented toward the diseases that afflict the poor, but, by and large, are not.
On the borderline between affluent-world and poor-world problems
is AIDS. Half of the NIH’s $. billion AIDS budget in went towardvaccine research (directly or indirectly); since then the NIH budget hasdoubled, as has the amount given to AIDS research. As the emphasis ofAIDS research shifts further toward vaccine development, the NIH isnow investing significantly more than a billion dollars in trying to dis-cover a vaccine for this disease. Of course, this reflects AIDS’ unusualstatus as an infectious disease that is a dangerous killer both in the poorparts of the world and in affluent nations.28
Compared to these figures, the amount of money explicitly set aside
for tropical disease is tiny. The only department officially devoted tointernational health problems is the Fogarty International Center, whose
. “WHO Factsheet: Onchocersiasis,” World Health Organization, Geneva, February
. In addition to those mentioned, the other pertinent departments are: NIMH, NIA,
. As is well known, the plight of poor people who suffer from AIDS is exacerbated by
the inflated prices of the drugs used to combat HIV in the affluent world. We applaud theBush administration’s initiative to commit funds to fighting AIDS in Africa, and hope thatthis will be carried through, that the program will be extended to other impoverished partsof the world, and that it will not be accompanied by prohibitions against the use of effec-tive methods for controlling the spread of the disease (i.e., condom distribution). Global Health and the Scientific Research Agenda
budget of $ million is almost a rounding error (although one for whichwe should be thankful). The NIH budget also includes $ million forthe Global Fund to Fight HIV/AIDS, Malaria, and Tuberculosis. Theexamples don’t exhaust the list of tropical disease projects, but they are representative. Indeed, when one factors in the medical needs ofAmerican military personnel who might have to serve in remote places,it’s clear that government support of biomedical research only occa-sionally—and accidentally—addresses the needs of the poor.
What would happen if some of the funds currently earmarked for dis-
eases that afflict people in the affluent world were diverted to such dis-eases as malaria and tuberculosis? As we have said, that is an empiricalquestion and we don’t know the answer. We do, however, believe that itwould take some serious work to defend the idea that taking a fewmillion dollars from cancer research would materially lessen the chancesof making progress in fighting cancer.29
A final, prudential, point: some of the infectious diseases that
flourish in the non-affluent world have already become drug resistantand have returned to haunt the rich. Tuberculosis is an obvious case: asresistant strains reach the United States, the death rate from the diseaseremains low, but the costs of controlling the infections has risen tobetween $ million and $ billion.30 Many leading microbiologistsbelieve that it’s possible that, in seventy years, current trends may leaveus facing a world in which no antimicrobial drugs remain effective.31Further, without more attention to the possible ways that increasedclearing of tropical rain forests encourages pathogen “jumping” fromnonhuman animals to our own species, we may be vulnerable to extra-ordinarily devastating diseases.32 In short, it’s not clear that the divisionof disease burden—with the protected rich and the vulnerable poor—issustainable.
. It should also be noted that the NIH’s budget is currently growing at a rate enor-
mously in advance of inflation; in it will have doubled in five years, from $ to $billion. Thus an increase to a half-billion dollars each in the annual funding for the malar-ial and tuberculosis vaccine projects would do no more than slightly slow the rate of growthof research into chronic diseases.
. Ruth E. Brown, Bess Miller, William R. Taylor, Cynthia Palmer, Lynn Bosco, Ray M.
Nicola, Jerry Zelinger, and Kit Simpson, “Health Care Expenditures for Tuberculosis in theUnited States,” Archive for Internal Medicine (): –.
. Garrett, Betrayal of Trust, p. . . See Garrett, The Coming Plague.
There are familiar arguments to the effect that we should do somethingabout the situation just reviewed, arguments that make the imperativemoral rather than merely a counsel of prudence. From a straightforwardutilitarian perspective it’s not hard to argue that frivolous expenditure byaffluent people should be redirected toward the alleviation of humanmisery, and, in the same way, one can indict the investment in researchinto new “lifestyle” drugs or the current neglect of many diseases.33 Evenwithout commitment to utilitarianism, or any form of consequentialism,it’s hard to resist the conclusion that the imbalance of effort representedby the / gap imposes some form of obligation to change how globalhealth is pursued.34 The amount of suffering that lies behind the recita-tion of facts in Section II—condensed and sparse though our review is—calls out for a response, and one cannot simply dismiss the burden ofdisease as distant or no concern of ours.35 If pleas for attention to globalhealth (or global hunger) are met with apathy, that is surely the result ofa sense that the case is hopeless; that no matter what we might do, theproblem wouldn’t be solved or even significantly alleviated.36
In our judgment, the sense of hopelessness arises from the conclu-
sions that are typically drawn from the moral exhortations: although it’s correct to think that the skewed distribution of the world’s diseaseburden requires somebody to do something, we think it’s important tothink broadly about what which individuals (or institutions) should do. The standard arguments focus on ordinary citizens of affluent nationsand on possibilities for giving aid to distant people who are afflicted with
. The arguments are made with great force by Peter Singer, “Famine, Affluence, and
Morality,” Philosophy & Public Affairs, (): –; Peter Unger, Living High andLetting Die (New York: Oxford University Press, ).
. Thus we won’t try to offer a moral theory to buttress the claim that we have a prima
facie obligation to respond to the plight of afflicted people in poor countries, because wedon’t see any plausible moral theory that fails to endorse any such obligation. The realissue, we maintain, is whether the size and severity of the challenge undercuts the viewthat what appears to be obligatory is genuinely demanded of us.
. Unger, Living High, makes the case against evasion on such grounds, and does so
with enormous thoroughness and clarity.
. Unger, Living High, refers to this as “futility thinking,” and we agree with him both
that such thinking lies behind the evasion of moral responsibility and that it is fallacious. As we’ll explain in the text, we think that the fallacy is a bit more complicated than Ungertakes it to be. Global Health and the Scientific Research Agenda
treatable diseases; philosophical concern for the health of the poor typically doesn’t focus on opportunities for research but rather on theapplications of existing knowledge that are not made because the fundsare lacking. In the classic example, we’re invited to consider two options,responding to a request for oral rehydration therapy that will save thelives of thirty children or failing to make that response.37 Realisticpredicaments would allow a far more extensive set of options, and it’sworth noting that it’s not self-evident that relations among choices arealways preserved when the choice set is enlarged. We don’t think that thisis more than a philosophical quibble in the case at hand; our aim is toexplore a much more systematic strategy for responding to the globalburden of disease, not to dispute what appears to us to be uncontrover-sial—to wit, that if our choices were restricted to sending the money ornot sending it we’d have an obligation to do the former.
Numbing apathy sets in, we believe, because the lack of any system-
atic strategy makes plausible a skeptical response.38 This response hasthree components: the first focusing on the size of the problem, thesecond on the costs of addressing it, and the third on our obligations tothose who stand in special relationships to us.
The skeptic starts from the idea that sending the money to cover the
costs of oral rehydration therapy is simply applying a band-aid to a veryserious condition. Considered from one perspective the analogy isclearly fallacious: the relievable suffering of an individual child doesn’tstand to the total affliction of people in poor countries as a minor cutstands to the overall condition of a person with grave damage to majororgans and systems. The skeptical comparison, however, is intended todraw attention to the systematic causes of suffering in impoverishedregions of the world, causes that are not in any way removed or muffledby sporadic efforts to give oral rehydration therapy to a very few chil-dren. The skeptic will point out that we may help a child who needs oral
. See Unger, Living High; Singer, “Famine, Affluence, and Morality,” uses similar
. This might be called the Malthusian Response, after the author of the Essay on Population, with its attempt to vindicate the gospel dictum that the poor will always bewith us. The name is useful, because the standard diagnosis of Malthus’s mistake viewshim as overlooking the possibility that technological developments can disrupt his alge-braic assumptions, but it also has misleading connotations, and so we’ve used the less spe-cific “skeptical response.”
rehydration today because she has had diarrhea from drinking contam-inated water, but she will continue to live in a place where the watersupply is always untrustworthy, where the chances for many forms ofparasitic infestation are high, where malaria and tuberculosis areendemic, where there is no chance for education, where women aretreated like commodities, where there are interminable tribal squabblesthat flare into hostility, and so on and so forth. Oral rehydration today is a band-aid in that it fails to remove any of the many causes of her continuing distress. Thus, it isn’t the case that, all by itself, the action ofgiving will genuinely reclaim the lives of those toward whom the aid isdirected.
One might dispute the point, arguing that the assessment that the
child saved today will be vulnerable tomorrow is unduly pessimistic.39Yet the skeptic will remind us of the full range of the suffering reviewedbriefly in Section II. Every month, a million children suffer and die of thesame conditions we have attempted to alleviate, and for this vast major-ity the world remains unchanged. To all appearances, when we and thefew children we have saved are gone, this tide of mortality will still rollin unabated. Anybody studying it will see our efforts as a gesture, a tinyisland of generosity, not a solution.
Once we are aware of this point, we can appreciate a second skepti-
cal concern. To recognize the obligation to give now would produce asituation so little different from the initial state that we would have anequally pressing obligation to go on giving. The skeptic invites us to con-sider two possible futures, the Status Quo and the Bleak World. In theStatus Quo, children in poor nations suffer and die somewhat earlierthan they do in the Bleak World; in the Bleak World their lives are pro-longed, thanks to generous responses from affluent people. In the BleakWorld the entire population of the affluent world does what is viewed astheir obligation—they give and they keep giving—but the scale is so largethat the donors find themselves committed to a policy that withdrawsfunds from many, indeed most, of the enterprises that give pleasure topeople in the affluent world: opera houses and theaters close, sportstournaments are cancelled, ancient monuments are allowed to decay,
. Unger (Living High, pp. –) suggests that affordable contributions would give
a child in a poor country a percent chance of reaching the age of , so he would presumably make the charge of pessimism. The skeptic might respond that the successcriterion that Unger uses is still too weak. Global Health and the Scientific Research Agenda
any natural preserves that could be turned to purposes of alleviating thesuffering of the poor are commandeered to such ends, and so on. Thebenefits gained by this reallocation of resources are only slight: the livesrescued from disease and malnutrition are somewhat longer and some-what less painful. In the end, however, many things that seem to makethe actual world a better place are forsaken without completely solvingthe problem of global disease.40
There’s an obvious reply: we’re not faced with a choice between the
Status Quo and the Bleak World. Perhaps we can make significantimprovements to the actual world by diverting funds from rich countriesto poor countries and relieving the burden of suffering there. As we shallargue below, we think that this is correct, but we don’t want to engage incontroversy about just how large the sacrifices from continued givingwould have to be; instead, we want to enlarge the space of options avail-able. If our choices were restricted to individual giving in reaction toindividual affliction, then we think that it’s genuinely unclear how drasticthe consequences for life in the affluent world would be.41 Further, theskeptic reminds us that it isn’t evident that alleviation of sufferingtrumps everything else, that there are no occasions on which it is betterto permit additional suffering in order that some other good be realized.
At this point, we can introduce the third theme in the skeptical
response. If the costs are as skeptics believe, then the task before us isn’tsimply to give up a few luxuries in order to address suffering among thedistant poor, nor even to settle for a more Spartan public and culturallife. There are sacrifices we must make in the provision of goods to thosewith whom we stand in special relations: our children, our elderlyparents, our loved ones, our friends. Perhaps in some instances it will be
. Here the skeptic appeals to the kinds of considerations that lead Derek Parfit to
identify the claim that a world in which billions live lives that are just worth living is prefer-able to a world in which a much smaller population enjoys lives that are full and rich asthe Repugnant Conclusion (Reasons and Persons, Oxford: Oxford University Press, ,part IV). One of us has argued elsewhere that the problem posed by Parfit is insoluble; seePhilip Kitcher, “Parfit’s Puzzle,” Noûs, (): –. The upshot of that analysis is thatwe ought to adopt a multidimensional approach to human well-being.
. Perhaps they would not be as dire as the skeptic believes. Surely (one might think)
if everyone in the affluent world gives to help the afflicted, the costs will be spread suffi-ciently thinly that much of the quality of life can be sustained. We won’t try to resolve thisissue because we believe that a purely reactive approach, even if effective, is not the bestway to address the problem.
possible to justify expenditures on education on grounds that these willmake possible a more effective response to the enterprise of giving moreto the cause of global health, but all our domestic efforts to improve thelives around us are subordinated to this more urgent project. There is agenuine worry about what would become of our human relationships if all our dealings with friends and relatives were held hostage to ourobligations to the many unknown people who suffer in distant places.
When we combine concerns about the lot of those who are dear to us
with the previous themes in the skeptical response, it is easy to antici-pate a collective action problem. Assume that if all of us do our part, thenthe burden of global suffering will be substantially eased; the skepticfinds this assumption optimistic, but we’ll allow it for the sake of argu-ment. If none of us contributes, the distant millions will suffer and die. You reason as follows: If all others contribute and you do not, then thelives of faraway people will go almost as well (any difference will be negligible), and those near and dear to you will benefit greatly from thefunds you would have sent (your elderly parents will enjoy the best care,your children will have wonderful educational opportunities, and soforth); if all (or even the vast majority) of the others fail to contribute andyou contribute, then the gains for the distant sufferers will be miniscule,while your relatives and friends will be shortchanged. Not contributinglooks like a permissible course of action, given that it seems to have goodeffects, whatever the others do.42
As we have said, we don’t find the skeptical response conclusive, and
we’ve indicated some potential ways of contesting it. But we don’t thinkthat the best way of meeting skepticism consists in pursuing thoseoptions—arguing, say, that a determined policy of individual contribu-tion really can alleviate the global burden of disease. Instead we believethat skepticism can help us think more intelligently about the problemof distant suffering; reflections on scale direct us to consider root causesand methods for eradicating them; attending to the various differentkinds of things we value can inform judgments about what sacrifices weshould struggle to avoid; noting that there is a looming problem of
. We won’t try to set this up formally, but there are obvious similarities with both the
Prisoner’s Dilemma and the Tragedy of the Commons. A principal difference, of course, isthat the payoffs represent the values that a reflective, altruistic, moral agent would assign:according to these payoffs, Don’t Contribute is superior to Contribute no matter whichcourse of action the others pursue. Global Health and the Scientific Research Agenda
collective action can inspire ways of combining individual and collectiveefforts.
Instead of a blanket obligation to send checks to UNICEF, citizens of
affluent nations have complex responsibilities that differ with theiropportunities and roles. Many of them should contribute more to reac-tive efforts that aim to reduce the suffering of those already afflicted, butmany people have more specific obligations to contribute to agendasthat complement such projects. Some of the most pressing obligationsand most potentially potent contributions belong to members of thebiomedical research community.
The skeptical trap is to frame debate by envisaging a line of worldsranging from the Status Quo to the Bleak World: the worlds are distin-guished by the amount of money affluent people send to provide suchthings as food, oral rehydration therapy, the drugs made available by pastresearch, and what we can expect by continuing with the same researchagenda. We’ll leave it to others to combat skepticism by claiming that thescale along the line is wrong, or that even if it’s right, we have some oblig-ation to head along the line that the skeptic draws. Our strategy is to getoff the line. As we noted in Section II, the creation and maintenance ofpublic health infrastructure could substitute efficient preventative mea-sures for recurrent reactive treatments. Further, if the scientific researchagenda were modified (specifically, if far more resources were commit-ted to studying the diseases that afflict people in poor nations) then wemight obtain systematic ways of eliminating major causes of suffering,or at least diminishing their power.43 The social change we need to seeis the extension of successful public health infrastructure and practicesto parts of the world that lack them; the technological change is the cre-ation of effective drugs and vaccines that can stop third world diseasesin third world conditions.
In our judgment, people in affluent countries have at least three dif-
ferent types of obligations. First, we’re obliged to provide relief for those
. In effect, we’re responding to skepticism in just the way that the historical Malthus
has been answered: we propose that seemingly inevitable human suffering can be evadedby social and technological change.
in imminent danger of severe disability and death; this involves preciselythe sorts of action that arguments about global suffering typically rec-ommend, giving to organizations like UNICEF and OXFAM that respondto crises. Additionally, the affluent nations collectively have an obliga-tion to attack the causes that make these kinds of suffering chronic. Thisobligation includes many projects, one of which is to bring to the poorerparts of the world the basic preconditions for preventing disease anddealing systematically with it: clean water supplies, clean air, shelter, areliable food supply, clinics and hospitals with electricity and facilitiesfor sterilizing equipment, schools.44 Citizens in rich nations have theobligation to contribute taxes so that funds can be given to promote apublic health infrastructure in poor countries, and even to lobby theirgovernments to enact measures that increase taxation specifically toprovide the facilities we’ve listed. Third, the biomedical research com-munity in the affluent world has the obligation to modify the currentresearch agenda so as to give much greater weight to investigations intothe diseases that produce extraordinary suffering among the poor. Oneof the sacrifices that citizens of the affluent world should be prepared tomake is the diversion of resources from inquiries into chronic diseasethat bring relatively small marginal chances of success. We note explic-itly that the three-component program we envisage is directed at allevi-ating the plight of the poor wherever they are; this means that one partof the commitment to building public health infrastructure consists inmaking public health facilities available to marginalized groups withinaffluent societies.45
In the long run, building public health infrastructure is probably the
most important of these three goals, and it is the most difficult toachieve. This is not, however, because such technical problems as secur-
. We include a system of education as a component of the public health infrastruc-
ture both because of the well-documented connection between educational level and con-trolled birth rate, and because of the importance of understanding the social changessometimes needed to stop the spread of infection.
. Part of the obligation thus consists in making medical care available to all people
in the United States. For a clear and powerful description of the ways in which U.S. medicine fails completely to meet the needs of many American citizens, see Garrett,Betrayal of Trust, ch. . We also note that concern for the poorer members of affluent soci-eties might also justify a policy of protecting those areas of biomedical research aimed atdiseases that disproportionately affect the poor; here we think of the impact that diabetesand sickle-cell anemia have on African Americans. Global Health and the Scientific Research Agenda
ing a clean water supply and controlling mosquito populations areunsolved, or because those solutions are prohibitively expensive. As wediscussed in Section II, the obstacles are political and social: eventhough we know how to maintain the health of a population at a highlevel, it can be extremely hard to do so in nations that are politicallyunstable, or corrupt, or that distrust intrusion by the affluent powers. Each region, each country presents very difficult special problems of politics and culture that must be understood and energeticallyaddressed as their infrastructure is built.
We believe that the burdens of disability and disease are themselves
contributory causes to the poverty and political instability that makegood public health difficult to establish, and that the apparent indiffer-ence of the wealthy nations to those burdens exacerbates these prob-lems. For a sovereign state to allow outsiders to greatly alter the way ithandles public health requires a condition of trust that is frequentlylacking; one way to foster trust would be to show that the affluent worldhas a serious concern for the suffering that infectious diseases bring tothe poor—that it is prepared to contribute emergency relief and, perhapsmore importantly, that it is prepared to devote the resources of its sciences to the development of effective drugs and vaccines that will bedistributed to those who need them without regard for their ability topay. Since it is both a partial solution in its own right and the potentialkey to making infrastructure improvement practical, a reformed healthresearch agenda is the third prong of our strategy, and perhaps the mosturgent one at this time.
In the rest of this article, we’ll focus on this third prong of our
strategy. We’ll argue first that individual researchers have an obligationto direct their research toward remedying the global research gap, andsubsequently that the institutions that fund and direct research have asimilar obligation.
There is a tendency to think of the obligations of scientists as verysimple; to view science as a private pursuit, driven by the love of truth. To be sure, virtually everyone would concede that in seeking the truthabout aspects of nature, there are certain kinds of things that can’t be done: human subjects shouldn’t be treated as mere means to the
establishment of a decisive experiment, for example.46 Provided that sci-entists conform to some relatively straightforward directives in design-ing their experiments, however, a standard view is that they have nofurther responsibilities; they should pursue the inquiries that strike themas most promising.
In developing a more adequate picture of the role of the scientist and
the obligations it brings, it’s important to distinguish two different settings in which scientific research is performed. Many people use their scientific training to work on projects ultimately motivated andconstrained by the marketplace; in certain ways, these scientists subor-dinate their role as scientists to their role as employees of profit-seekingcorporations; that isn’t to say, of course, that they can legitimately seekto defend findings they know to be false, or anything of a similar nature,for in both roles they are subject to obligations of honesty. We’ll be prin-cipally concerned with the second group of scientists, those whoseresearch isn’t directly linked to their attempts to provide marketableproducts; those for whom the stereotype of disinterested truth-seekersis most plausible. So, in discussing the obligations of scientists, we’ll beconcerned with those who work in universities or in laboratories with nodirect mandate from large corporations, not those whose research roleis framed by the quest for economic gains.47
We think that the minimal conception of the scientific role, sketched
in the first paragraph of this section, is incorrect. In becoming a scien-tist someone takes on a new role, and that role brings obligations.48 Tofulfill the role, scientists should devote their energies toward achievingthe goals of the branch of science in which they work. What are thesegoals? Not simply discovering truth, for the truths about the world aretoo many and, for the vastly greatest part, too trivial. Were the biologicalcommunity to decide en masse that all further research efforts were tobe directed toward cataloging the exact number of bristles, hairs, or
. Two well-known examples of cases in which this moral requirement was violated
are the Tuskegee study of syphilis (in which Black patients were left untreated and igno-rant of their condition) and the grotesque experiments of some Nazi doctors.
. Of course, the line between the university research laboratory and the marketplace
is becoming increasingly blurry. For reasons that will become obvious from our discussion,we take this to be a matter of considerable concern; see also Philip Kitcher, Science, Truth,and Democracy (New York: Oxford University Press, ).
. Here, and in what follows, we’ve been influenced by Michael Hardimon’s revival of
role obligations; see his “Role Obligations,” Journal of Philosophy (): –. Global Health and the Scientific Research Agenda
similar structures found in individual organisms of an enormous varietyof species, we’d rightly condemn the decision. This is because the aim ofthe sciences is to answer significant questions, and there’s no significantquestion at which the enumeration of bristles is directed.
We suppose that there are two sources of scientific significance. Some
questions are significant because correct answers to them would enableus to solve practical problems, to intervene in nature in some way, or topredict its future course. Even investigations that have no direct practi-cal benefits are sometimes undertaken because we suspect that therewill be possibilities of prediction and intervention that will ultimatelyflow from them. Yet this is not all. Certain questions inspire scientificeffort not because—or not merely because—answers would bring prac-tical benefits (directly or indirectly) but because of prevalent humancuriosity. It’s hard to imagine what pragmatic payoff would result fromsorting out the exact relationship among the australopithecines; even ifour understanding of the processes through which zygotes develop intomature organisms would open up new possibilities for medical treat-ment, that understanding is still valuable independently, for its ownsake.49
We’ll say that the pursuit of science in a society is well-ordered when
the research effort is efficiently directed toward the questions that aremost significant.50 In the contemporary world, the sciences are poten-tially applicable to a large number of questions that impinge on the well-being of many people, almost certainly too many for all of them to bethoroughly and systematically pursued. Well-ordered science mustinevitably be selective, and we propose that it should respond to thechoices that would be made by an ideally informed collection of repre-sentatives of divergent points of view, with each representative commit-ted to learning about and taking seriously the needs and interests of eachof the others. To suppose that the collection of representatives be con-fined to the points of view within the affluent world is, in our judgment,to make an important moral error. Hence, our conception of well-ordered science supposes that weight must be given to the needs ofthose who suffer the enormous burden of infectious disease in the poorregions of the world.
. Here we summarize a line of argument developed at much greater length in Kitcher,
Science, Truth, and Democracy.
. This conception is articulated further in ibid., ch. .
Our defense of the claim that a narrower conception of the set of view-
points represented is morally mistaken will be relatively brief. It’s amatter of historical accident that some people live in societies with theresources to commit to scientific research, and, we suggest, no ideal forthe direction of scientific inquiry should reflect such accidents. It’s easyto extend a familiar Rawlsian thought experiment and to imagine our-selves choosing an ideal for the conduct of science without yet knowingwhether we shall find ourselves in one of the societies lucky enough to support research; as we understand that thought experiment, theobvious decision is to include the perspectives of all in the framing ofwell-ordered science. Further, if, as we believe, the principal oppositionto responding to human needs, even when they are distant, is that suchresponses are inevitably futile, then no such counterargument is avail-able when the envisaged responses feature the development of the sciences. The institution of science fulfills a valuable social functionbecause scientific knowledge brings us both intellectual and practicalgoods, and societies invest in and support the institution largely becausethey believe in the efficacy of research to address practical problems.51Neither the claim that scientific inquiry is futile nor that it can onlyaddress the needs of a restricted group of people has the least plausibil-ity. Any narrowing of the class of viewpoints represented in well-orderedscience thus reflects not hard-headed realism but a callous neglect ofthose who are poor and distant.
Having outlined and briefly defended an ideal, we now consider what
obligations flow from it. Taking on the role of a scientist brings with itthe responsibility of contributing to well-ordered science. That respon-sibility doesn’t necessarily preclude the possibility of addressing issuesthat have purely theoretical significance, of attempting to satisfy humancuriosity. Yet it would be a travesty of well-ordered science to proposethat only two kinds of inquiries be pursued: those that attempt to satisfydisinterested curiosity and those that seek to meet the practical needs ofcitizens of affluent nations. Hence, in the presence of the / gap,there’s ample reason to think that scientific research is not promoting itsproper goal. In consequence, scientists have an obligation to do whatthey can to remedy the situation.
. For further development of this theme about the function of scientific research, see
Philip Kitcher, “The Scientist’s Role” (John Wesley Powell Lecture, ). Global Health and the Scientific Research Agenda
For some scientists, of course, there’s little that can be done directly;
they work in fields that are too remote from those that bear on theneglected issues. Biomedical researchers, however, can often do muchmore. Some have the option of pursuing inquiries that might have value in relieving arthritic symptoms or of working on some modelorganism that might be useful in studying infectious disease. By takingthe latter course, they can move the research community closer to a stateof well-ordered science. In our judgment, they have the obligation to do so.
Further, all scientists have an obligation to engage in political
activism, to campaign publicly for greater investment in research thatwould address the disease burden of the poorer regions of the world. Butthe capacity of ordinary scientists to bring about much change is prob-ably limited; they are typically inclined and trained to discover facts, notinfluence political opinion. The administrators who control the flow ofcash to science play on a more public stage. We turn next to their responsibilities.
Several different types of organizations fund enough research sub-
stantially to affect science policy. Governments of rich nations are obvi-ously important, although we think it more useful to consider these as afew different, semiautonomous institutions—in the United States, forexample, we might list the NIH, the NSF, and the complex of nationallaboratories. A second type consists of the biopharmaceutical industry,considered either as a bloc or as individual companies. Independentfoundations like the Wellcome Trust and the Gates Foundation make upa third. The university research system is a fourth, although once oneconsiders the sources of funding it becomes clear that university labo-ratories can’t operate independently of the government institutions anda few foundations. We’re going to concentrate on the American researcheffort, and we’ll reduce the four categories to two: the first is the gov-ernment, primarily in the form of the NIH and the university labs itfunds; the second is the biopharmaceutical industry.
If, as we’ve claimed, the / gap represents a departure from
well-ordered science, then while we may view scientists as having beeninsufficiently vocal in protesting, the root of the trouble seems to be theresearch priorities set by the NIH and the biopharmaceutical companies. We’ll deal with the two sources of funding separately, beginning with thecase of publicly funded science.
As noted in Section II, the priorities of the NIH budget are badly
misaligned with the global burden of disease. In light of the promise of technological solutions to problems that cause massive human suffering—such as pathogen sequencing, with consequent attempts toconstruct vaccines—NIH administrators have a moral obligation to dowhat they can, within the budgetary constraints imposed, to modify thecurrent grossly skewed distribution; since the constraints make it impos-sible even to approximate a distribution that would make research on adisease comparable to the toll exacted by that disease, they have thebroader responsibility to protest the legislative guidelines. By the sametoken, legislators ought to repeal the existing constraints in ways thatwould make it possible to move much closer to well-ordered science. Citizens have the obligation not only to write their individual checks, but also to support these legislative changes.
How might these claims about moral responsibility be evaded? If we
are right in claiming that the principal source of resistance to the origi-nal arguments enjoining individual contributions to disease relief lies inthe sense that such contributions are futile, then the crucial issue iswhether our revised moral imperative faces a similar skeptical response. Skeptics can certainly point out that changing the research agenda isn’tguaranteed to bring success, either in addressing any particular diseaseor in creating a climate in which public health interventions would bewelcomed. But, of course, we typically lack guarantees when we investin biomedical research, and, as we noted in Section II, there’s goodreason to anticipate results from an ambitious vaccine developmentproject. If the calculated risk of investing in research pays off, the scaleof the potential reward is inspiring. For example, AIDS, tuberculosis, andmalaria are each single causes of a million or more deaths a year, alongwith considerable related suffering. If we can develop and distribute aneffective vaccine for just one of these diseases, the gain to human well-being is hard to express adequately. Since our hope here is to eradicateor completely control the disease, the skeptics’ worry that we’re com-mitted to an indefinite sequence of draining contributions is no longergermane. Since the costs of such vaccine research are low on a globalscale, and returns to world security and the world economy great, weneed not worry that it will drive us toward the Bleak World or make usdo poorly by our commitments. Continued AIDS vaccine research andcredible attempts at malaria and tuberculosis vaccines are the least futileof enterprises. Global Health and the Scientific Research Agenda
Suppose, however, that serious investments in research on the dis-
eases that afflict poor nations don’t succeed. To what extent should wepour more funds into the effort? We think that this question is hard toanswer responsibly in advance. Judgments of the promise of researchstrategies are rightly revised as investigators discover new things, and itmight turn out that the promise we have envisaged proves unreal. Ourjudgment is that given the prospects as they now appear, a commitmentto a distribution of research that assigns each disease its fair share ismorally required. That, by itself, doesn’t fix the level of total funding forbiomedical research. We are inclined to believe that affluent nations (inparticular the United States) could afford to increase the research budgetso that such diseases as cancer were still funded at approximately theircurrent levels (although this would depend on serious exploration of thelikely returns from investment at the margin), and the entire researchbudget were constructed by indexing to these amounts by applying thefair share principle.52 We note also that a public commitment to thisinvestment would be a clear declaration of concern for the suffering ofpeople in poor countries, and that undertaking the commitment mightwell create an atmosphere of trust that would allow the exportation offirst world public health infrastructure, even if the technological solu-tions were less frequent than we believe likely.53
As we noted in Section II, the funding for science that comes out of
biopharmaceutical business roughly matches that provided by govern-ment, and we’ll turn now to the question of whether pharmaceuticalcompanies have any obligations to change their ways. There’s an obviousdefense of Big Pharma—its business, after all, is business. The demandsof the free market make it impossible for companies to devote more thantoken resources to unprofitable projects. Imagine that a company wereto seize the moral high ground, turning a significant proportion of itsresearch resources toward vaccines for tropical disease. Profits wouldfall, investors would go elsewhere, and the decline might be so rapid that
. For a more detailed account of how levels of funding might be set under well-
ordered science, see Kitcher, Science, Truth, and Democracy, ch. . We note that the levelwe envisage here seems not to be vulnerable to the skeptical concerns about the sacrificeof many things that are valued in the affluent world.
. Given our account of the roles of citizens, of legislators, and of NIH administrators,
it’s relatively easy to see that any worries about the potential collective action problem areforestalled; in effect, we’re envisaging a classical solution to the difficulties of coordina-tion—to wit, the use of government as a coordinating mechanism.
the research would never be completed. Plainly the market constrainsaction.
Yet the most obvious point to make about the pressures against devel-
oping vaccines for understudied diseases is that we needn’t take theforces of the market as an unmodifiable given. Even the most devout freemarketer should recognize the legitimacy of questions as to whether agiven domain is best organized by subjecting it to the organization of themarket; it’s worth bearing in mind that Adam Smith thought it impor-tant to argue that international trade should be governed by the market,and that he believed that there were preconditions for the operation offree markets that were best provided in other ways.54 If half the fundingfor scientific research is allocated by a process that muffles (or silences)the major concerns of percent of human beings, and if those concernsare not being adequately addressed, then there’s a prima facie case forthinking that the market organization of biopharmaceutical researchought to give way to a different system. One obvious possibility is for government to provide incentives to companies that invest in develop-ing drugs for underresearched diseases, perhaps by allowing those com-panies tax relief. To defend the status quo one would need to show thatthese, and other ways of trying to generate a less skewed distribution ofresearch effort, involve sufficiently large costs in efficiency.55 Until theargument has been given, there’s a moral obligation to modify theagenda of biopharmaceutical research to provide much greater fundingfor vaccine projects (and similar programs aimed at reducing the diseaseburden on the poor).
The line of argument we have broached here leads into more general
issues about the role of the market in issues of health and health care. There are serious questions about whether we should honor the allegedefficiency of the free market when it leads to skewed (often grosslyskewed) distributions in the availability of health insurance and in therelative density of doctors, clinics, and hospitals in different places, aswell as to inflated costs for drugs and other forms of treatment. We shall
. See Wealth of Nations, books and . The cluster of issues about the proper sphere
of governmental provision continues to occupy political economy after Smith; see, forexample, J. S. Mill’s Principles of Political Economy.
. One intriguing possibility, suggested to us by the Editors of Philosophy & PublicAffairs, is that scientists form nonprofit organizations in which to pursue biomedicalresearch. This seems to us an option well worth exploring. Global Health and the Scientific Research Agenda
rest content with adding the possibility that pharmaceutical companiesmight be required to devote a portion of their research investment toalleviating the global disease burden to a family of proposals that favortempering the relentless pursuit of efficiency: proposals for universalhealth care coverage, for a more equitable distribution of medical access,and for the limitation or abolition of patents. Detailed examination ofhow the current practices of pharmaceutical companies could be mod-ified to accord better with the obligations we have been highlightingmust await a future occasion.
Our current biomedical science is a very long way from being well-
ordered. Collectively, we have the obligation to do much better. We’veargued that the obligation takes different forms, depending on the role(or roles) that a person plays in the direction of scientific research. Legislators have the responsibility to modify the conditions under which biopharmaceutical companies and NIH administrators allocateresearch resources; drug company executives and administrators shoulddo whatever legislators cannot to correct the imbalances in the distrib-ution of research effort; individual scientists should reorient theirresearch, where they can, in ways that bear on the diseases that afflictthe poor; and ordinary citizens ought to support all these efforts—evenif it means that some of our personal interests are thereby sacrificed.
RE: Reporting Occurrences of Infectious Diseases If you have contracted or suspect that you have contracted influenza (the flu) or any other infectious disease, immediately report this to your Department’s Academic Affairs Manager. The information from these reports will be collected by the Student Health Center, which will implement measures to prevent further spreading of the infection
MINNEWASKA AREA SCHOOLS STUDENT REGISTRATION/INFORMATION FORM District # 2149 409 4th St. S.E. School: Minnewaska Area Elementary Medical information: Student’s Legal Last Name Student’s Legal First Name: Non-aspirin (acetaminophen or Tylenol) will be provided when necessary ONLY in the case of low-grade fever. I DO give permission for the school nurse/sta