Transcript

The last unit in our five-part science literacy curriculum is called the “ethics of science”.

I’ll need to clarify what I mean by this, because the words alone could mean anything.

What I have in mind are questions like these:

1. How does science actually benefit people?
2. Are there distinct kinds of benefits that science confers?
3. Who benefits the most from science?
4. Who decides what scientific questions get attention and public support?
5. Who should decide?
6. Do some people, or some countries, disproportionately benefit from science at the expense of others?
7. If so, is this situation justifiable, or is it unfair?

These are questions that ask us to think critically about the impact of science on human lives, broadly understood, and about the social and political organization of science.

However, to reiterate the point I’ve been making throughout these introductory videos, these questions are almost never mentioned in science classes, and almost never critically addressed in the formal education of scientists.

Scientists get socialized into the political organization of science through their education and training. In order to compete for grant money they have to learn to navigate this organization and play by the rules that have been set out for them.

But who sets the rules? How are they justified? If there was a different way of organizing and directing science, how would we decide if it should be implemented? Who gets to decide?

I think these are important questions, but we need to make them vivid to see why they’re important, so let me give you a context that will help you get a feeling for them.

Neglected Diseases

Let’s talk about what have been called “neglected diseases”.

In poor countries many people die or are disabled by respiratory infections, intestinal disorders, parasitic infections, malaria, tuberculosis — diseases that are not a serious problem for rich countries, where clean water and vaccinations and preventative medicine are widely available.

This is a boy with schistosomiasis. You get it from contact with fresh water that contains parasitic flatworms, which cause infection in the urinary tract and the intestines. In those who have been infected a long time, it can cause liver damage, kidney failure, infertility, or bladder cancer. In children it can impede their natural growth and cause learning disabilities. This disease affects over 200 million people, mostly in tropical regions.

“River blindness” is the the second most common cause of blindness due to infection. The worm is spread by bites from black flies, which tend to live near rivers, hence the name of the disease. It’s also caused by a parasitic worm. It starts with severe itching, bumps under the skin and then affects vision and causes blindness. There is no vaccine for this disease, the only way to prevent it is to avoid being bitten by flies. Between 20 and 25 million people are infected with river blindness.

These are women suffering from filariasis, another disease caused by infection with parasitic worms, in this case a roundworm, which are spread by black flies and mosquitos. The parasites lodge in the lymphatic system. The most striking symptom of this condition is elephantiasis — swelling of the limbs with thickening of the skin and underlying tissues. These women have the condition in their legs, but it can occur in other parts of the body.

This is a man with leishmaniasis. It’s caused by a protozoan parasite and its spread by the bite of certain types of sandflies. It causes skin ulcers, which can also form in the mouth and nose, and there’s a form of the disease that is more visceral and goes inward, affecting red blood cells and the spleen and liver.

This disease currently affects about 12 million people, with 2 million new cases occurring each year. About 200 million people live in areas where the disease is common.

Diseases of the Poor

So, what do these diseases have in common?

These are diseases that disproportionately afflict the poor. They prevail in tropical and sub-tropical conditions in 150 countries, and affect more than a billion people, and they cost developing economies billions of dollars a year. The World Health Organization estimates that in 2008, almost 9 million people died from these diseases of the poor.

Now, here’s the point I wanted to make in relation to our topic, the ethics of science.

It also turns out that the vast majority of these diseases are strikingly understudied. Global health organizations call them “neglected diseases”. There’s a pressing need to develop remedies that can be exported to the environments where people are most afflicted. Given the magnitude of the problem, it is shocking how little research is actually being conducted to develop such remedies.

Why is this? Biomedical research is part of a multi-billion dollar global industry. Why isn’t more of it going to disease research that could dramatically improve the lives of hundreds of millions of people?

Well, we need to ask — where is this research being conducted, and who is conducting it?

Disease research follows most basic scientific research in that it’s almost entirely conducted within modern, industrial, high-GDP countries.

Globally the largest percentage of scientific research is conducted by for-profit companies working within specific industries, like pharmaceuticals, defense, agri-business, technology, natural resources, and so on.

A smaller percentage but still very important contribution to basic research comes from government agencies of these rich countries, like the National Science Foundation and the eNational Institute of Health in the United States. These agencies partner with universities and private companies to form the backbone of publicly funded research and development within the richer industrial countries of the world.

Now we need to ask, what determines the research priorities of these different sources of scientific funding?

Well, in the case of pro-profit companies, their priority will be to direct their research toward products that can be brought to market and sold for a profit. Obviously there’s more profit to be made serving the needs of the rich than the poor.

National funding agencies, on the other hand, tend to direct research funds toward projects that improve the quality of life for the the citizens of that nation. But in rich countries like the United States, these neglected diseases are not a pressing problem, so historically they haven’t been a national priority.

The result is that total global research support for neglected tropical diseases was about 3 billion dollars in 2008. By contrast, the total research and development funding for pharmaceuticals was around 100 billion that same year. Where are most of these research dollars going? Just consider that the global market for beauty products — shampoo, skin care, cosmetics and so on — is about 260 billion dollars.

The global market for acne treatments alone is around 5 billion dollars, of which the United States alone is worth 3 billion dollars.

This the financial reality of privately funded science.

The vast majority of pharmaceutical R&D money is directed toward developing treatments and products that can be accurately described as solving “first world problems”.

I’m to saying these are all trivial problems. Many of them are trivial, like developing new formulas for lipstick that continues to look wet but doesn’t smear.

But cancer research gets a lot of funding, and of course that’s absolutely not trivial.

No, what we’re trying to do is explain why tropical diseases of the developing world have not been a research priority, and what I’m saying is that it’s not surprising that they’re not a priority, once you understand the way that most scientific research is organized and funded.

Private, market-driven interests take priority over global public interests. And national interests take priority over global public interests, until those global interests start to impact national interests.

This point about national interests is illustrated in stark fashion in this article, which criticizes the US government for cutting funding to Walter Reed Army Institute for Research. This institute’s mandate is to conduct biomedical research that is important for defense and US military needs.

One of those needs is to not have American soldiers contract infectious tropical diseases while engaged in military activities in the Middle East, Central Asia and Africa.

Walter Reed in particular has notable expertise in diagnosing and preventing leishmaniasis, one of the parasitic diseases I mentioned earlier, because this disease has been such a threat to US soldiers.

As the article says, by cutting funding to this infectious disease research program, “we now risk sending US troops into harm’s way deprived of our nation’s most important resource for preventing tropical infections”.

In this instance the concern for funding research on tropical infectious diseases is entirely reflected through the lens of US national interest, and in particular, the interest of US national defense.

There’s no mention whatsoever of the value of this research for the welfare of the local populations who actually live in these regions.

Let’s be clear, I’m not criticizing Walter Reed or the writers of this article for thinking about infectious disease control from the perspective of national interests. That’s their job, that’s their mandate.

The question that needs to be asked is whether we’re comfortable with the way that scientific research priorities are determined, controlled as they are on the one hand by profit-oriented market interests, and on the other hand by public national interests.

Is this the way we want scientific research to be organized and funded?

But that just raises the questions that I want to address in this unit, to close, let me repeat them here.

1. How does science actually benefit people?
2. Are there distinct kinds of benefits that science confers?
3. Who benefits the most from science?
4. Who decides what scientific questions get attention and public support?
5. Who should decide?
6. Do some people, or some countries, disproportionately benefit from science at the expense of others?
7. If so, is this situation justifiable, or is it unfair?

Believe it or not, my concern with this unit on the ethics of science isn’t specifically with biomedical research and global health.

I’m just using this to give a vivid example that illustrates one important dimension of the problem.

I believe that an important component of science literacy is understanding that we all have a stake in these questions.

A program of science literacy should equip people with the relevant background knowledge to be able to participate in critical conversations about the social and political organization of science, and specifically these sorts questions.

So in this unit on the ethics of science I’m going to develop some resources that will help people ask the right sorts of questions, to better understand what’s at stake in how we, as a society, answer them.