Thursday, May 31, 2007

Sen Talk at Oxford

Last night Amartya Sen gave an excellent public lecture at the magnificent Sheldonian Theatre here in Oxford. His talk launched OPHI, Oxford’s Poverty and Human Development Initiative. Below I summarize the central arguments he advanced in his 60 minute talk.

Sen began the talk by recalling Edmund Burke’s judgment that Warren Hastings should be impeached. The example tells us something about justice. On the one hand, justice is the kind of thing it is impossible to be silent about. Yet justice is also difficult to speak about; it is hard to get judgments right.

Several theories of justice may yield the same conclusion (like Hastings should be impeached). In such cases any one of the potential supporting grounds will do. And this has implications for a theory of justice and how we make judgments concerning policies and institutions.

Sen called these cases—that is, cases when we arrive at the same conclusion via different grounds—circumscribed congruence.

He gave the example of Bush’s decision to invade Iraq. One could invoke numerous arguments against the decision:

(1) that more global agreement was needed
(2) the importance of being well informed on things like weapons of mass destruction…
(3) democracy… let the citizens decide this executive decision themselves
(4) will this bring about peace?

All of these arguments are relevant… but if can be shown that they all lead to the same conclusion then we do not have to establish which theory wins.

Sen then turned to the policy issues facing OPHI. And he began by discussing the most influential theory of justice- that of John Rawls. One could address poverty in a number of different ways:

(1) by invoking Rawls’s difference principle (max. the minimum)
(2) invoking utility
(3) Sen’s own argument (capabilities)

Sen himself did not believe that (2) should play a big role, in part because people adopt to deprivation, they cut down their desires, etc… However, Sen did not believe (2) should be shunned.

If the conclusions of these theories clash then we need to decide which one is right. But often they yield parallel results.

Sen talked about deprivation and “primary goods”. This focus on the means rather than the ends does not always do justice to those ends. In particular, to the fact that our ability to convert primary goods to ends my vary among people.

These debates should make use of other approaches (e.g. primary goods, utility)… maybe develop new approaches.

Sen then turned to the title of the talk: What Theory of Justice. He noted that he would not present any particular theory today, but he is working on a new book entitled Reasons of Justice. What we need is a broad, rather than narrow, theory of justice. The fact that there may be cases where the theory does not give us a “yes”/”no” answer may be an important part of the theory.

A complete theory may yield an incomplete ranking- it answers some cases, is silent on others. When the issue of priority has not be resolved a theory can still be helpful; it can bring new considerations to the fore.

Sen then emphasized the need for plurality by giving an example: 3 children are fighting over a flute, Who should get it?

The first child tells you he is the only one of the three that knows how to play it. The second child tells you he is poor and has no other toy of his own to play with. And the third tells you she has been working on the flute for months and then the others came along and claimed it.

For libertarians, egalitarians and utilitarians the answer in this case may seem obvious.

But all three claims have serious arguments in their favour.. none can be (to use Scanlon’s phrase) “reasonably rejected”.

Cases may arise where there is no conflict in examples like this (e.g. when the person who made the flute is also the poorest), in such cases this could lead to circumscribed congruence.

Sen then turned to Rawls. Rawls gives lexical priority to liberty (over other things). This makes sense when transgressions of liberty are very serious, but not when they are less serious. In the latter cases it is harder to defend Rawls’s stance. Hart make this objection to Rawls, and Rawls conceded some ground. We need a more responsive stance, one that does not impose lexical ordering.

Sen then turned to two important questions:

(1) What do we want from a theory? (e.g. comparative assessments on what makes society less unjust)

(2) What is the linkage between fairness and justice? (need for impartiality)

In addressing (1) Sen touched on issues in an article in the May 2006 issue of Journal of Philosophy

Sen outlined what he calls the “transcendental approach”, which searches for the perfectly just arrangement. This can be contrasted with the “comparative approach” which ranks social arrangements rather than focus on what is perfectly just. Sen believes these two approaches are distinct, and that we can do the latter without the former.

The focus on transcendental justice has had its problems, especially in global justice debates. Rawls and Nagel, for example, believe you need institutions and these don’t apply in global order so we end up with some minimal humanitarianism.

Sen then outlined the different ways neutrality has been invoked. For example, with John Rawls’s contract device. This version of “closed impartiality” only applies to members of a given society.

Sen concluded by emphasizing his departures from Rawls- that Sen gives different answers and tackles questions Rawls doesn’t ask. When it comes to global justice, we should adopt the comparative approach (and open impartiality). We need to make room for plurality and circumscribed congruence.

It was a real pleasure to get the opportunity to hear Sen’s talk. He is a profound and important thinker. One who effectively bridges the gap between theory and practice.


Tuesday, May 29, 2007

Four New Breast-Cancer Genes Identified

...reports this News@Nature story. Here is an excerpt from the report:

Breast cancer — which will affect about one in every nine women in Britain and the United States — is known to have a strong genetic influence. But until now, known genes could account for only about a quarter of the genetic component of cancer risk.

To search for some of the many other genes thought to make small differences to a woman's breast-cancer risk, Easton and his colleagues compared the genomes of some 4,400 women with breast cancer with those of about 4,300 who did not have the disease.

They identified 30 differences in single DNA bases that seemed to be linked to the disease. These were then compared in more than 20,000 women with breast cancer and in a similar number of controls.

....Three of the newly discovered genes are involved in controlling the growth of cells. The gene with the strongest association was fibroblast growth factor receptor 2, or FGFR2.

Women who have two copies of the high-risk version of this gene — about 16% of the population — have a 60% greater chance of developing breast cancer than do those with no copies of the gene, Easton and his colleagues found.

At present, scanning these newly discovered genes would tell us little about a woman's cancer risk. But as more and more genetic risk factors are uncovered, genetic profiling could give doctors a fine-grained picture of individual risk, and could even lead to bespoke treatments offering the best chance of preventing or treating the disease.


Wednesday, May 23, 2007

Political "Philosophy"

Jo Wolff was here today at Oxford and gave a great talk about issues addressed in this PAPA paper. In particular, he outlined his discontents with contemporary theories of equality- for example, the over-reliance on abstract examples, the lack of a positive vision of the good society, and the assumption that we must strive to provide an account of the correct principles. I am very sympathetic to Jo’s approach and arguments, and I am looking forward to reading his new book, co-authored with Avner-de-Shalit, entitled Disadvantage.

During his talk Jo had emphasized the need for taking seriously the problem of transition (from here to the ideal society) and the need for a second-best theory. In the question period I probed him a bit on whether it is accurate to call the less idealized theory a “second-best” theory. In other words, if the so-called “1st best” theory is best only on paper, but ill-equipped to tackle the real challenges we face now, in what sense is it a “first-best” theory? Unfortunately I think most political philosophers ascribe the label “first-best” to “first-best conceptualism”. But I see no reason why we should privilege abstract philosophizing like this. The test of a theory’s adequacy, for me, is two-fold.

Firstly, it should help us diagnosis the injustices of real societies. So it will open our eyes to things we perhaps ignored or didn’t realize were that important or problematic. Secondly, the theory should inspire sage prescriptions for mitigating the disadvantages we find in real societies.

Because I think a theory of justice is an inherently practical theory, abstraction is, on the whole, probably going to do more harm than good. In particular it will be harmful if we make examples of abstract “2-person worlds” our main concern. Contra the mainstream, I do not think such examples have enhanced our deliberations about distributive justice. I think they have actually impoverished our deliberations. And this is most evident by the wide gap between theory and practice.

Thinking more about Jo’s talk got me thinking… I am being too harsh on ideal theorists? Isn’t it the job of philosophers to employ abstract examples, to search for principles of justice, etc.?… I agree that doing all this stuff is fun and engaging, but at the end of the day these abstract activities do not really get us anywhere, I think, really interesting.

This got me thinking further- Does this mean I am not a political “philosopher”? No doubt some would say I am not. But what, exactly, makes one a political philosopher? To answer this question we could turn to the activities of those employed in philosophy departments and simply describe what they are doing as the ideal type. But I myself do not want to do that. I guess I have a much more perfectionist understanding of the discipline. And I thought I would outline some of my thoughts here.

Political philosophers are concerned with many different issues that relate to how we ought to live, collectively, as a society. Some questions covered in standard political philosophy courses include: the state- is it legitimate?; Equality- does it matter? if so, how and why?; Liberty- what does it mean to be free?; Democracy- good or bad? Again, reflecting on these questions is great stuff and an important part of our intellectual culture. I make my living teaching these things and I love it.

But what, really, makes one a political philosopher in the truest sense of “philosopher”? This question is something I believe many academic philosophers don’t really ask or try to answer. I suspect most people think it is self-evident. “I know real political philosophy when I see it!” For analytically trained philosophers this will (primarily) involve deploying the conceptual tools and analyses of analytical philosophy. But I myself do not think this is what makes one a philosopher.

The Greek definition of philosophy means “love of wisdom”. So a political philosopher is one who aspires to achieve phronesis. Prudence, argues Aristotle, is concerned with particulars as well as universals. And particulars become known through experience (not abstraction). When political philosophy is dominated by “first-best conceptualism” we inhibit the exercise of phronesis as our focus becomes fixed on abstract hypotheticals and pristine theories that yield a shortlist of principles. And this focus comes at the expense of an appreciation of our history (cultural, socio-political), the challenges raised by scarcity, problems of institutional design, non-compliance, etc.

So a true philosopher is not interested in winning the “first-best conceptualism” debate. Rather they are concerned with diagnosing practical predicaments and showing us how best to confront them. Recall my post “What is political theory?” So political theorists of the sort Dunn outlines are, I believe, the true political philosophers.

And my sense of things is that the tide is slowly starting to turn away from ideal theory. For example, just this month alone the CPA has a symposium on “Political Philosophy and Non-Ideal Theory” and the ECPR held a workshop on “Social Justice: Ideal Theory, Non-Ideal Circumstances” (and a number of those papers attack my paper, but I welcome this debate and know full well that Rawlsians and Dworkians will not concede ground without a fight!).

The attention being given to non-ideal theory is, in my opinion, a very good development indeed. And I am genuinely excited about where such debates might take the discipline in the decades to come!


Egalitarianism, Education Attainment and Marriage

Last week the Globe and Mail had this article about this study which suggests that the tendency of better educated people to marry each other has been a key force in producing unequal family incomes. This raises interesting questions for egalitarians who take the kind of hard line position advocated by G.A. Cohen. That is, those who believe that an “egalitarian ethos” requires us to make salary and career decisions that will be optimal from the point of view of the least advantaged. Does a similar moral obligation apply to our attitudes about potential partners?

Just to be clear, I myself am not a luck egalitarian, nor has my choice of partner exacerbated inequality. But I think there are some important questions here worth taking seriously. Namely, how the personal decisions (concerning what constitutes a desirable partner) of many educational elites further entrench the attitudes and social structures they supposedly are opposed to.

Cohen does of course invoke a proviso that permits individuals to pursue self-interest to some “reasonable degree”. And one might think that this proviso then rules out a moral obligation that applies to our choices concerning who to marry. But I don’t think this is the case. What the proviso would rule out is the stringent requirement that a person marry a particular person (X), or remain single, simply because that decision would be optimal for the least advantaged.

But the proviso would not rule out a more general requirement, something like the following: those who have above average levels of educational attainment are morally prohibited from limiting their search for a partner to people with similar levels of educational attainment.

One might respond to this move by claiming that this imposes unfair burdens on educational elites. A major reason the educated marry each other is they meet at university, at work, have common interests, etc. So this imposes too stringent a requirement on educational elites. But I think this response will also fail. Of course some people might say “All the people I meet at work have PhDs!, and hence most of the people I date are educational elites”. But this fact simply follows from the conscious or unconscious constraint that one has imposed on themselves- namely, that they will only seriously date people from the small pool of candidates with the desired educative qualifications. Sure it is time consuming to meet people outside of work, but the social class system of contemporary capitalist societies are not so rigid that educational elites do not meet intelligent, friendly, kind, engaging people with lower educational qualifications. So the response that it is hard to meet people just doesn’t cut it.

While I am not a Cohenian egalitarian, I am sympathetic to the concerns I raise above. I think there is something deeply troubling about the attitude of some educational elites who have a very narrow view of who constitutes potential partners. Some of this is just snobbery (which is rampant in academia), but it is also something more troubling.

Many academics pay lip service to ideals of inclusion and equality, and yet the decisions they make in their personal lives reinforce the attitudes and social structures that run counter to these ideals. So the motto “the personal is political” is useful to invoke again.

Not only does the tendency of educational elites to marry amongst themselves harm equality, it also harms the individuals who adopt such a narrow view of potential partners. Exposure to difference can enrich one’s life in diverse and valuable ways. Given that the level of educational attainment will also likely track other things, like socio-economic background, this tendency says something dire about the poverty of our culture.

The behaviour of some educational elites detracts from the real value the relationship of marriage can offer. Perhaps this is the product of the consumerist society- where even the choice of partner is seen through the impoverished lens of economics. In a society where the ideal of genuine love informs our decisions about marriage, I do not think we would find this pattern of marriage among educational elites. But to make that argument I would need to say a lot more about my perfectionist account of love and happiness. And I’m still mulling that over.


Fetal Gene Therapy in Mouse Model

This report in the latest issue of the Proceedings of the National Academy of Sciences highlights the progress being made, as well as the challenges involved with, developing a gene therapy for fatal forms of thalassemia.

What is thalassemia? Here is some info from the National Human Genome Research Institute:

What do we know about heredity and thalassemia?

Thalassemia is actually a group of inherited diseases of the blood that affect a person's ability to produce hemoglobin, resulting in anemia. Hemoglobin is a protein in red blood cells that carries oxygen and nutrients to cells in the body. About 100,000 babies worldwide are born with severe forms of thalassemia each year. Thalassemia occurs most frequently in people of Italian, Greek, Middle Eastern, Southern Asian and African Ancestry.

The two main types of thalassemia are called "alpha" and "beta," depending on which part of an oxygen-carrying protein in the red blood cells is lacking. Both types of thalassemia are inherited in the same manner. The disease is passed to children by parents who carry the mutated thalassemia gene. A child who inherits one mutated gene is a carrier, which is sometimes called "thalassemia trait." Most carriers lead completely normal, healthy lives.

A child who inherits two thalassemia trait genes - one from each parent - will have the disease. A child of two carriers has a 25 percent chance of receiving two trait genes and developing the disease, and a 50 percent chance of being a thalassemia trait carrier.

Most individuals with alpha thalassemia have milder forms of the disease, with varying degrees of anemia. The most severe form of alpha thalassemia, which affects mainly individuals of Southeast Asian, Chinese and Filipino ancestry, results in fetal or newborn death.

A child who inherits two copies of the mutated gene for beta thalassemia will have beta thalassemia disease. The child can have a mild form of the disease, known as thalassemia intermedia, which causes milder anemia that rarely requires transfusions.

Here is the abstract from the PNAS article:

Fetal gene therapy of α-thalassemia in a mouse model

Xiao-Dong Han, Chin Lin, Judy Chang, Michel Sadelain, and Y. W. Kan

Fetuses with homozygous α-thalassemia usually die at the third trimester of pregnancy or soon after birth. Hence, the disease could potentially be a target for fetal gene therapy. We have previously established a mouse model of α-thalassemia. These mice mimic the human -thalassemic conditions and can be used as preclinical models for fetal gene therapy. We tested a lentiviral vector containing the HS 2, 3, and 4 of the -LCR, a central polypurine tract element, and the -globin gene promoter directing either the EGFP or the human -globin gene. We showed that the GFP expression was erythroid-specific and detected in BFU-E colonies and the erythroid progenies of CFU-GEMM. For in utero gene delivery, we did yolk sac vessel injection at midgestation of mouse embryos. The recipient mice were analyzed after birth for human -globin gene expression. In the newborn, human -globin gene expression was detected in the liver, spleen, and peripheral blood. The human -globin gene expression was at the peak at 3–4 months, when it reached 20% in some recipients. However, the expression declined at 7 months. Colony-forming assays in these mice showed low abundance of the transduced human -globin gene in their BFU-E and CFU-GEMM and the lack of its transcript. Thus, lentiviral vectors can be an effective vehicle for delivering the human -globin gene into erythroid cells in utero, but, in the mouse model, delivery at late midgestation could not transduce hematopoietic stem cells adequately to sustain gene expression.


Tuesday, May 22, 2007

Blair's Support for Science

Many critics of Tony Blair are quick to draw a parallel between Blair and Bush. But this "News of the Week" piece in the latest issue of Science shows why such a comparison is unfounded. The article outlines the strong boost Blair has given science during his ten year tenure as Prime Minister. Contrast this with Bush's record (see here and here) and you see how different their worldviews really are. Here is an excerpt from the Science article:

As Tony Blair last week announced his intention to step down in June after 10 years as the United Kingdom's prime minister, the British media cited his devastatingly low poll ratings as proof that the Iraq war would overshadow any other legacy for the Labour Party leader. But the U. K.'s scientific community has far warmer feelings toward Blair's government, thanks to its steady and significant increases in funding, its liberal attitude to human embryonic stem cell research, the recruitment of scientists to help shape government policy, and a clampdown against animal-rights extremists. And Blair early on embraced the dangers of climate change as a personal crusade, even making it a focal point of the 2005 summit of the G8 leaders.

When Blair spoke out about science, his enthusiasm was evident. "This government is unabashedly pro-research," says neurobiologist Colin Blakemore, head of the U.K. Medical Research Council. "There is a deep commitment to science and what it can achieve for government."

In 1997, Blair's Administration took over a scientific enterprise that had been slowly starved of funding over 18 years of Conservative government. The first sign of revival came in 1998 in the new government's initial spending review: Research got a 15% boost over 3 years. "[Blair's] interest and commitment to science go right to the beginning," says University of Oxford ecologist Robert May, chief scientific adviser to the U.K. at the time. Over Blair's tenure, the science budget, which supports the grant-giving research councils as well as subscriptions to the likes of the CERN particle physics lab and the European Southern Observatory, has more than doubled in real terms to its present £3.4 billion ($6.7 billion). Among other things, that money paid for the new £380 million Diamond synchrotron, which began operating in January and is the biggest new U.K. research facility in 40 years. "There's a lot more of a positive feeling now in the whole scientific endeavor," says geneticist Robin Lovell-Badge of the National Institute for Medical Research in Mill Hill.

I do not think we shall see scientists making supportive statements like this at the end of Bush's Presidency.


Sunday, May 20, 2007

Canadian Boy Undergoes Gene Therapy in Italy

Yesterday's Toronto Star has this story about sixteen-month-old Parker DesLauriers from Ajax, Ontario. This young boy has ADA-deficient severe combined immunodeficiency ("SCID", also known as "Bubble Boy Disease"). You can learn more about SCID here.

SCID is a rare, genetic disorder that is characterized by little or no immune response. Parker and his family travelled to Milan to partake in a gene therapy trial. And this inspirational blog by Parker's family really brings home the magnitude of the stakes at issue with experimental biomedical research like gene therapy. Thanks to the DesLauriers family for sharing Parker's story with us.

As I was reading their blog my youngest son, who is 4, asked me what I was doing. And I told him about Parker, SCID and the experimental treatment Parker travelled all the way to Italy to receive. So we wish Parker and his family all the best with a speedy and successful recovery.


Biomedical Philanthropy

This week's issue of Nature has a number of interesting articles on Biomedical Philanthropy. Given the reality of the challenges we face with respect to biomedical research (e.g. its risky, costly, etc.) we need to appreciate the limitations of relying on state funding alone if we hope to mitigate (in the foreseeable future) the arbitrary and often tragic consequences of the genetic lottery of life. This means that an efficient and fair regulatory system will permit room for both state-funded and privately-funded biomedical research. And this has important implications for determining how robust intellectual property rights should be (e.g. gene patents), the nature of the relationships between academia and private industry, and the proportion of the government's budget that should be spent on pursuing experimental genetic interventions versus other cost-effective measures which mitigate disadvantage.

Appeals to abstract moral/political ideals alone (e.g. equal opportunity, prioritarianism, sufficiency, inclusion, etc.) will not help equip us with the theoretical tools necessary for addressing the challenges we face in the real, non-ideal world. That is, a world with pervasive pluralistic forms of disadvantage, indeterminacy, scarcity, etc. Once we appreciate the complexity of the challenges we face with respect to making real success on this front we realise that the question of what constitutes a just regulatory framework for biomedical research is a difficult challenge, but one we cannot afford to ignore or take lightly.

So the latest issue of Nature provides some useful insights into the role philanthropy plays in biomedical research. Here are some excerpts from the issue.

"Biomedical philanthropy: The giving machine"
Lucy Odling-Smee

The Gates foundation contributes roughly 10% of the US$12.7 billion a year spent on health-related aid to developing countries by donors such as the United States, United Kingdom and France. The world needs to commit a lot more funding to improving global health. Estimates of the additional resources that are needed to meet the United Nations Millennium Development Goals for health range from $25 billion to $70 billion per year. We believe that our funds have been catalytic in many ways. For example, our initial $750 million contribution to the GAVI alliance — formerly known as the Global Alliance for Vaccines and Immunisation — prompted further donations of more than $2 billion. GAVI has helped to increase immunization rates in millions of children in 70 developing countries.

....As a private foundation, what can you do with your money that other funders cannot?

We often support 'high-risk, high-reward' projects that can be difficult for governments or the private sector to fund. For example, the Medicines for Malaria Venture, one of our major grantees, is partnering with industry to conduct clinical trials of new treatments for malaria. Private companies would not be able to fund these trials alone, because of the high financial risk of conducting expensive trials on products that do not have a market in wealthy countries.

"Biomedical philanthropy: Love or money"
Erika Check

....With their new focus on delivering cures, today's foundations also insist that researchers deliver results or, in the case of high-risk projects, at least show that they tried. Some ask for detailed reports every six months or a year, and make further funding contingent on meeting strict milestones. High Q awards contracts rather than grants to ensure that scientists actually do the work they say they will do, rather than pursuing serendipitous tangents — a luxury that is allowed or even encouraged with government grants. The foundation also insists that researchers share the results of their work as quickly as possible, and discuss unpublished findings openly with colleagues at meetings.

Some researchers find this type of oversight too onerous or controlling. They resent the loss of intellectual freedom and tend to stay away from groups such as High Q. Robi Blumenstein, a former businessman who now manages the operations of High Q and the CHDI, acknowledges that their business-like procedures can chafe some academics, but he makes no apologies. "We want people to have great ideas, but we need to get them done," he says. "When we switched to this more rigorous model we acknowledged that we weren't going to get everybody to work with us."

"Biomedical philanthropy: State of the donation"
Meredith Wadman

....These new givers — the gigaphilanthropists — are perceived to be making an impact on the research landscape that is much greater than the sum of their dollars. "The effect of the private foundations is not reflected in the total funding they supply. They have disproportionate influence," says Hamilton Moses of the Alerion Institute, a Virginia-based think-tank that focuses on innovation in biomedical research. They can, and do, take financial and scientific risks unthinkable with tax-payers' dollars. They fill gaps left by government and industry, dictate exactly what their money is spent on and act quickly compared with the sometimes glacial pace of government agencies. But although those running the organizations are sure that private money buys more and better science than public money, there is little concrete evidence they are right.

The new wealth also comes with strings attached: some funders keep a businesslike control over the direction of the research they pay for and demand a level of accountability that can make researchers uncomfortable (see page 252). Some observers worry about the growing power wielded by the gigaphilanthropists over the research agenda if, as is predicted, charitable giving reaches new heights in the future. They are concerned that too many important decisions with an impact on biomedicine will be made in the boardrooms of foundations with little scientific expertise — and no public input or accountability. "You may have foundations with assets larger than almost 70% of the world's nations making decisions about public policy and public priorities without any public discussion or political process," says Pablo Eisenberg, a senior fellow and philanthropy-watcher at the Georgetown Public Policy Institute in Washington DC.


Friday, May 18, 2007

Palgrave Book (Chapter 1 now online)

Palgrave MacMillan have now posted chapter 1 of my forthcoming book Justice, Democracy and Reasonable Agreement online. You can download it from their website here. And this previous post outlines the central concerns and arguments of that book.


Thursday, May 17, 2007

Is Healthcare Special?

The distributive principles of justice we invoke should be "good-specific". In other words, the principles that might be appropriate for the distribution of X (e.g. wealth, punishment, education, healthcare, etc.) are not necessarily the appropriate principles for the distribution of Y.

What principles should govern the distribution of healthcare? I believe this is one of the most challenging and important questions we need to tackle. Ezekiel Emanuel has an excellent commentary piece in the latest issue of JAMA entitled "What Cannot Be Said on Television About Health Care". His focus is on the need for healthcare reform in the United States but I think some of his insights also apply to Canada. Here is a sample:

For decades it was accepted that health care was special. Indeed, it was so special it could not be considered a usual good or service to be traded on the market for other goods. As Daniels, a leading bioethicist, once argued, “A theory of health care needs should . . . illuminate the sense in which many of us think health care is special and should be treated differently from other social goods.”

To many, the specialness of health care meant that cost should not be a consideration in care. Ethical physicians could and should not consider money in deciding what they should do for sick patients. Patients were to receive whatever services they needed, regardless of its cost. Reasoning based on cost has been strenuously resisted; it violated the Hippocratic Oath, was associated with rationing, and derided as putting a price on life, akin to the economist who knew the price of everything but the value of nothing. Indeed, many physicians were willing to lie to get patients what they needed from insurance companies that were trying to hold costs down.

The tipping point came when the media began reporting that the high cost of pharmaceuticals forced some elderly to choose between drugs and food. Health care actually was being traded off against other goods both at the individual and social level. The implication was that for Americans, health care did not necessarily seem so special; other essential needs—food, housing, or heating—could be just as special. The same phenomenon began to play out in state budgets. Increasing costs of Medicaid and health insurance premiums for state workers meant cuts in Medicaid’s discretionary services or, more commonly, in other state services, especially primary and secondary education and support for state colleges and universities.

Americans began to realize that, as the economists would say, spending on health care has opportunity costs. Too much money spent on health care reduced the ability to obtain other essentials of human life as well as some goods and services not essential to life but still of great value, such as education, vacations, and the arts. Indeed, experts in the social determinants of health emphasized that many of these other factors, from income to education, were integral and perhaps even more integral than health care services for improving health outcomes. When health care began compromising access to other important goods—food, heating, and education—it ceased to be so special it was beyond cost.

The Canadian healthcare system is of course different from the American system in important ways. Many Canadians like to beat the patriotic drum and claim the superiority of our universal publicly funded system, but I myself am not inclined to do so. In part because I think it is very difficult to compare the virtues and vices of the two different systems. And I believe this stems from the larger problem that the question "How should healthcare be distributed?" has not been given enough serious consideration and debate.

Defenders of the status quo in Canada might feel that answer is obvious- that the universal publicly funded system is just because it coheres with a principle of equal opportunity. But such a stance really fails to address the central dilemma that Emanuel highlights- the need for tradeoffs. Invoking equal opportunity, in the context of healthcare, does not tell us how much we should spend on healthcare versus other important social programmes (e.g. education). So if we spend too much on healthcare we run the risk of ignoring the importance social determinants play in promoting our health (and social justice more generally). When equal opportunity for healthcare is combined with a "spare no expense" attitude it unjustly privileges mitigating one particular type of disadvantage over other laudable aims.

The other horn of the dilemma is that if we do not invest enough in the pubic healthcare system we end up with a situation of everyone having equal opportunity for inadequate provisions. In this kind of scenario should we prevent those who can afford to pay for better healthcare from doing so? Consider, for example, the case of Chaoulli v. Quebec (2005) (decision here, helpful summary here). The Supreme Court of Canada ruled that a prohibition on private health insurance is not constitutional when the public system fails to deliver reasonable services. Now one might of course argue that that the Supreme Court should not be the judge on what constitutes "reasonable and unreasonable" healthcare services- that responsibility should fall to Canadian citizens and their elected representatives. But if the Court is correct in its judgement about the state of these provisions, then either more should be done to better fund the public system or we should not prevent individuals from privately purchasing better healthcare. The danger with the former course of action is it could unfairly privilege the priority of healthcare over other social programmes because healthcare is a bottomless pit. And the cost of the second option is greater inequality.

I don't know what the just course of action is in this kind of scenario. But I think it is imperative that we make explicit the pros and cons of the options available rather than simply invoke the rhetoric of abstract ideals. If pushed, I guess I am inclined to take the view that healthcare is not so special that we should take the "spare no expense" attitude, nor is equality of opportunity so special we should prevent people from spending their money on improving their own health (rather than spending it on something else). But I am still of mixed minds on this. In part because the interplay between the different stakes involved in the debate are so complex and interconnected.

These various problems are not of course unique to the distribution of healthcare. Rights-based theories of justice, which dominate philosophical debates, maintain that all rights are special- that they should be serially ordered (to borrow Rawls's terminology) and thus are immune from these kinds of tradeoffs. This stance has impoverished our theories of justice and wedged an almost irreconcilable gap between theory and practice.


Tuesday, May 15, 2007

Disability and Sport

On the weekend I attended an excellent event at Manchester University - the "Disability and Disadvantage" Practical Philosophy Workshop. There were a number of interesting talks and discussions on a range of issues from the different accounts of disability and autonomy to concerns of cost effectiveness and the non-identity problem. I really enjoyed it.

As this workshop was going on Manchester was also hosting the Visa Paralympic World Cup 2007. The NY Times has this interesting piece about amputee sprinter Oscar Pistorius from South Africa. Pistorius had both legs amputed when he was only 11 months old. Now 20, he can run the 100 meter sprint in 10.91 seconds. But to do so he relies on two carbon fiber blades attached to his legs. Pistorius wants to be able to compete for the next Olympics. Should he be able to compete with athletes who use their natural legs? Here are some snippets from the article:

....Pistorius is also a searing talent who has begun erasing the lines between abled and disabled, raising philosophical questions: What should an athlete look like? Where should limits be placed on technology to balance fair play with the right to compete? Would the nature of sport be altered if athletes using artificial limbs could run faster or jump higher than the best athletes using their natural limbs?

....“I pose a question” for the I.A.A.F., said Robert Gailey, an associate professor of physical therapy at the University of Miami Medical School, who has studied amputee runners. “Are they looking at not having an unfair advantage? Or are they discriminating because of the purity of the Olympics, because they don’t want to see a disabled man line up against an able-bodied man for fear that if the person who doesn’t have the perfect body wins, what does that say about the image of man?”

....“These have always been my legs,” [Pistorius] said. “I train harder than other guys, eat better, sleep better and wake up thinking about athletics. I think that’s probably why I’m a bit of an exception.”

One who is attempting to broaden the definition of an Olympic athlete.

“You have two competing issues — fair competition and basic human rights to compete,” said Angela Schneider, a sports ethicist at the University of Western Ontario and a 1984 Olympic silver medalist in rowing.


Friday, May 04, 2007

Latest Issue of Science

The latest issue of Science has a number of interesting articles and news reports related to human genetics that are worth noting. The first is this report that a novel genetic variant that raises some people's odds of having a heart attack has been identified. The report is also the focus of this news item and this one in the Globe and Mail. Here is the abstract of the report in Science:

A Common Allele on Chromosome 9 Associated with Coronary Heart Disease
By Ruth McPherson et. al.

Coronary heart disease (CHD) is a major cause of death in Western countries. Here we used genome-wide association scanning to identify a 58 kilobase interval on chromosome 9p21 that was consistently associated with CHD in six independent samples (n> 23,000 participants) from four Caucasian populations. This interval, which is located near the CDKN2A and CDKN2B genes, contains no annotated genes and is not associated with established CHD risk factors such as plasma lipoproteins, hypertension or diabetes. Homozygotes for the risk allele comprise 20-25% of Caucasians and have a ~30-40% increased risk of CHD.

There is also this encouraging "News of the Week" report that a U.S. genetic nondiscrimination bill finally appears to be on its way to becoming law. Here is an excerpt from the report:

The House passed H.R. 493, the Genetic Information Nondiscrimination Act (GINA), on 25 April by a vote of 420 to 3. Although action on a Senate version of the bill has not yet been scheduled, the Senate unanimously passed versions of GINA in 2003 and 2005, and President George W. Bush has announced his support of the measure. The sticking point had always been in the House, where the Republican leadership, reflecting opposition from some business groups, blocked the bill from coming to a vote. With the Republicans swept out of power in the 2006 elections, the bill moved quickly to the floor and is expected to pass the Senate this month.

Advocates of the bill claim that many people are afraid to undergo genetic tests--for instance, to detect a mutation that increases risk of breast cancer--for fear that insurers or employers will discriminate against them based on that information. And a 2000 survey of genetic counselors indicated that, for the same reason, more than half would not submit charges for genetic tests to insurance companies.

And finally there is an interesting Policy Forum piece entitled "Environmental Biology and Human Disease" by David Schwartz and Francis Collins, which emphasizes the importance of paying attention to the environmental factors (and not just genetic factors) that contribute to the development of disease. This is something I also argue in my forthcoming paper "Genetic Justice Must Track Genetic Complexity". Here is an excerpt from the piece by Schwartz and Collins:

The etiology of most chronic human diseases (such as asthma, atherosclerosis, and cancer) is complex, involving a mix of genetic and environmental factors interacting with each other over hours, days, months, or years. Until recently, however, the disciplines of environmental sciences and genetics have proceeded independently; investigators in the former discipline have focused primarily on adverse conditions and diseases that are etiologically driven by environmental factors (such as benzene-induced leukemia), and those in the latter field have been finding genetic factors for highly heritable conditions (such as cystic fibrosis). Progress is now being made in identifying common genetic variations that contribute to complex diseases such as age-related macular degeneration, type 2 diabetes, and prostate cancer. However, the best opportunity to reduce risk in genetically susceptible people for the foreseeable future will not be to re-engineer their genes, but to modify their environment. The successful dietary treatment of phenyl-ketonuria is a clear example.

We need to understand how genetic factors and environmental exposures interact in individuals to alter normal biological function and to affect the risk of disease development. This basic information is critical to understanding why and under what circumstances certain individuals develop disease and others remain healthy. Defining environmental contributions is also critical in identifying how and under what circumstances DNA sequence variations affect disease pathogenesis.

....Progress in identifying genetic variations that contribute to common disease has been rapid in the last few years....[But] the same rapid rate of progress has not been achieved for precise, quantitative assays to measure environmental factors that contribute to adverse health outcomes. Certainly, assessment of environmental contributions is much more difficult than for genetic ones. The genome of an individual represents a bounded set of information, remains basically stable over time, and is very well suited to multiple analytical approaches. The potential universe of medically significant environmental exposures is much less well defined, and disease may appear several years after the exposure has ended. However, another explanation is apparent by contrasting the extensive investments in new genetic and genomic technologies over the past two decades with the much more modest expenditures in exposure sciences.


Tuesday, May 01, 2007

First Attempt at Gene Therapy For Sight Disorder

Today marks another important date in the ongoing quest to mitigate the arbitrary and often tragic consequences of the natural lottery of life. As this BBC News piece reports, Robert Johnson underwent the first ever gene therapy for a sight disorder. It will be months before the results of the experimental therapy are known. And researchers at University College London Institute of Ophthalmology spent 15 years working on the therapy. Here is an excerpt from the BBC story:

Mr Johnson's disorder is caused by a faulty gene called RPE65.

This defect stops the layer of cells in the retina at the back of the eye from working.

Usually, these are cells that detect light, but in Mr Johnson's case they are damaged, and stop him from seeing properly.

The operation involves injecting working copies of the defective gene into the back of the eye.

It is hoped that the replacment genes will enable the retina to detect light - and eventually improve Mr Johnson's sight.

Let's hope the technique proves successful. I'll be sure to post an update on this story once the results of the procedure are known.