The “underserved” are “undeserved”

I hate the phrase, “the underserved”. I would love to remove it from the lexicon of public health. But it appears to be here to stay, particularly in North America where there is even a journal devoted to them.

A girl with kwashiorkor during the Nigerian-Biafran War (Public Domain; Wikipedia).

On a number of occasions in public lectures I have played with the phrase using a comparison of the “undeserved” and the “underserved”. It usually takes listeners a few minutes to work out that I am not repeating myself over and over again. And if you thought I had typed the same thing twice, look again. “underserved”≠”undeserved”.

My spell-checker knows the difference. It tells me that “underserved” is a spelling error and I almost certainly mean “undeserved”, and herein lies the problem. It is not simply that these two words look and sound similar, it is that there is an unpleasant semantic connection between them. It seems to depend where you lie on the political spectrum which term you use to refer to the same group of people.

On the left, the powerless and the left-behind, those with poor access to services and care would be characterised as the underserved. On the right of politics (or a nationalist left where refugees and migrants are vilified) anyone in need, the powerless and the left-behind, those with poor access to services and care are more typically characterised as the undeserved. The same people, the same need, and the same suffering, but a more or less generous view of our social obligations.

 

Potential living-donors should have no choice

I recently learned three interesting and disturbing facts. First, I have a distant, 5 year old relative with liver failure. He will be dead within weeks unless a suitable liver donor is found. Second the lobe from a living adult’s liver can be used to save his life. Third, I am a match. I learned these things when I was received notification from the National Transplant Registry. They also informed me when the surgery will take place, when I am to arrive at the hospital, and that I have no choice. I will be donating a lobe of my liver. It was the first time I knew about any of this.

Unless you have no choice about being the means to someone else’s ends.

Apparently my life is my own, except when it isn’t. The life of my young relative is so precious, so important, that my wishes are of no consequence. I am the vessel for his survival. I am the means to his ends but not to my own.

You can imagine how outraged I feel. I don’t feel outrage about his need, but about my lack of agency — my lack of control over my own body.

This is, of course, nonsense. Hyperbole if you like. There is no transplant registry in the world that can mandate surgery; there is no country in the world where one person’s body is just the means for supporting the life of another.

Unless you are a woman.

All over the world, as a matter of law, women are obliged to make their bodies available as the means to another’s end. In many countries, to withdraw the service is a criminal offence, resulting, in substantial jail terms. We call this protecting the right to life. They call it an unwanted pregnancy.

Article 4 of the Universal Declaration of Human Rights states inter alia that “No one shall be held in slavery or servitude.” I am the means to my own ends and I can choose when to be the means to another’s ends. Being held in servitude is being forced, for however limited a duration, to be the means to another’s ends. It is a rights violation whether it is a requirement to give up a part of your liver to save another, or to provide rental space in your abdomen.

To share power, someone has to give up power

Over the past few years I have been peripherally involved in various discussions with male colleagues about gender equity. The conversations have had a predictable ebb and flow.

Women’s empowerment. It’s great in theory, but who wants to give up power? Not these men. [source: reddit; https://bit.ly/2wd2AJC]

The consensus, at least among my colleagues, is that gender equity is a good idea. In the abstract, we fully endorse it. The practice is another matter. It is not that we don’t want to share power. We’re enlightened! We know there is a problem, but can it be someone else’s power that is shared?

The reasoning goes something like this. I should not have to share power. I’m talented, I got here on merit, and I deserve everything I achieved. It is an absolute social good when I have power. For me to give up power would not be good, because I wield it benignly and actively promote gender equity. It would be great if another man gave up power because that would support gender equity.

At a fundamental level, power is a zero-sum-game. There are only so many seats around the high tables of power, and if someone gets a seat at the table, someone loses a seat. Sure, we can squeeze an extra seat in here or there — but there are limits. If someone sits on a panel, someone else cannot sit on the panel. If 50% of the world’s population suddenly achieved fair access to power, power that had been largely controlled by the other 50%, competition would increase sharply.

In 2017, the World Health Organization Director-General Tedros Adhanom Ghebreyesus, tried to fudge the arithmetic [it has since changed]. He appointed a substantial number of women to senior positions in WHO. He did this by increasing the pool of senior positions, and he appointed women to the new positions. Unfortunately, many of the new positions were without substantive portfolios, and without real power. In effect he dragged some extra stools to the table. Chairs for men. Stools for newly appointed women.

The strategy had all the right visuals without the structural capacity to support gender equity; i.e., the fair distribution of power.

Gender equity is a good idea. It will be achieved through structural changes that share power and resources, not through appeals to people’s better nature nor through empty gestures. The test of whether one person’s power has increased is whether another person’s power has been diminished.

Indonesia pushes back against trickle down science

A recent article in Science Magazine (July 2019) described changes to Indonesian laws regulating the way that foreign scientists can do science in Indonesia. The laws are, in essence, a push back against “trickle down science“, in which scientist in Global North Institutions engage in colonial science. This is what happens when Global North researchers engage local institutions to provide service scientists and easy access to samples without any genuine consideration for their Global South collaborators.

The implications of the new law are still uncertain, but it may affect one of the studies on which I am in investigator. The change in the law means that

[Foreign scientists] need to get ethical clearance from an Indonesian review board for every study (although some types of studies may be exempted), submit primary data and published papers to the government, involve Indonesian scientists as equal partners, and share any benefits, such as the proceeds from new drugs, resulting from the study. Researchers can’t take samples or even digital information out of the country, except for tests that cannot be done in Indonesian labs, and to do so, they need a so-called material transfer agreement (MTA) using a template provided by the government. (Rochmyaningsih, 2019)

A Bajaut Laut community in Sabah, Malaysia. It was a study in a community like this one in Indonesia that sparked a debate about subaltern science.

It is hard to fault any of the new requirements. Of course there should be ethical clearance and of course the clearance should come from the country in which the science is being done. Lodging the data and the papers seems like a reasonable idea. The Indonesian governments wants papers and data lodged with the them; a bolder and more constructive approach may be for data and papers to be lodged in accessible repositories. Of course Global North researchers should have in-country scientists as partners and of course the collaborators should be equal partners — not pretend equal partners, but actual, equal partners. Of course the benefits of the science should flow to all the countries engaged in the science. These are not high hurdles to jump unless the scientists from the Global North thought they should be able to arrive, collect samples, and run … which would never happen, right?

I could have predicted the kind of response that has already begun with the announcement of the Indonesian law, because I have heard the responses before. Indonesia (or insert the name of your favourite Global South country here) doesn’t have the capacity to do the research that we want to do. It wasn’t the research idea of the scientists in Indonesia, it was our idea. These new laws will destroy science in Indonesia, because any credible Northern researchers will move to a more accommodating country; i.e., a more readily exploitable country. Every single one of these responses condemns the person who utters them, because each one shows a complete lack of commitment to genuine, scientific collaboration.

The issue of #trickledownscience seems to have come to a head in Indonesia with the publication of an article in Cell — the high impact factor (36.2) journal in experimental biology. The article, reported a study of genetic adaptations to hypoxia in the Bajau Laut people, a nomadic, sea-dwelling community in Southeast Asia. The article is fascinating and well worth a read, and the authors should be congratulated on a great piece of science! The problem is not with the findings, it is with the process of Northern Scientists going to far flung places to do their research without any genuine engagement or collaboration with local scientists. There are 17 authors listed on the paper and with only one exception they come from Denmark, Germany, the Netherlands, the UK and the US. The exception is author #15, an Indonesian who is and education researcher and has no background in genetics or cell biology, and whose contribution was to “provide logistical support”. Author #15 comes from Tompotika Luwuk Banggai University — a small, private institution in Central Sulawesi; underscoring the lack of genuine collaborative intent, Tompotika’s university ranking is 498 in Indonesia and 12,999 in the World. This is a far-cry from, to give one example, the more relevant and credible Eijkman Institute for Molecular Biology in Jakarta.

The publication of the article received good coverage in The New York Times, and less desirable coverage in Science Magazine. The heart of the problem is revealed in a comment by Melissa Ilardo, who was the doctoral student on the study and the first author of the Cell paper. Commenting on the controversy, she said, “I did everything I could to conduct this research ethically and properly, and this is breaking my heart”. I truly feel for her. To be a young (post-)doctoral student and have to go through this kind of scrutiny would be awful. But just think about Ilardo’s idea of “doing everything” to conduct the research properly. What does it mean to conduct oneself properly when the #trickledownscience relationship is a profoundly colonial one. The study looks a lot like the modern day equivalent of the Elgin Marbles; however, instead of retrieving (stealing?) ancient artefacts, Global North reseaerchers  collect biological samples.

The new Indonesian law is probably too heavy handed, but it is in the right direction. There is little doubt that there is a problem with #trickledownscience, and governments in the Global North, funders, and institutions need to push the nascent dialogue with the Global South about how appropriate, collaborative science can develop that addresses the needs of the Global South and not the whimsies of scientists in the Global North.

I predict it will be those Global North institutions that tackle this issue head-on that will be the most successful. It does require that they give up a little power to retain a little power, and it begins by negotiating genuinely, collaborative arrangements that address (1) the most pressing scientific questions in the Global South, (2) the building of capacity in the Global South, (3) sustainable funding for research in the Global South, and (4) sustainable, collaborative research relationships between the Global North and the Global South.

I was trying to imagine what the response in the US would be if a group of Indonesian, Nepali, and Tanzanian scientists arrived in the US to collect saliva samples from a Hasidic community in upstate New York or an Amish community in Pennsylvania. A young academic at a local community college would provide “logistical support” and facilitate obtaining ethical clearance from the college’s Institutional Review Board. The samples would be collected from the community and shipped back to the Eijkman Institute in Jakarta for analysis. A paper would subsequently appear in Nature detailing some interesting genetic variations associated with the communities. Would the science be celebrated in the The New York Times or would someone have a WTF moment and question how this could ever happen?

I am looking forward to that studying being done. Will NIH fund it, I wonder?