[pkaye]

But this seems to be different situation from what the article is talking about which is the inadequate involvement of minorities in drug trials. You are highlighting the lack of adequate health coverage which is a different issue in the US. But this bring up a question if blacks and other minorities have the poorer health outcomes in other countries? Japan, China, South Korea for example does their own drug testing and development so would they find that a particular drug doesn't work on their population at all? What about the black population in UK or France? Do they also have poorer health outcomes?

[charlescearl]

Or generally if historically oppressed minorities get poorer health outcomes.

It seems a complex question that has many facets. Two tickets that come to mind:

1. When US sociologists and political scientists talk about “systemic and structural racism” this is one of the manifestations.

That in general the well being of Native peoples in the US, of African Americans is devalued. It is witnessed in the exclusion in drug trials, in the diseases that pharma considers worthwhile to address, in the staffing of hospitals, in the access to healthcare,etc.

2. The unique inefficiency of the US healthcare system among those of wealthy countries has been documented in depth so I don’t know if is possible to do an adequate comparison of progressive health systems (e.g. Japan, UK, Finland) against that of the US.

It might be worthwhile to pull in progressive health systems that focus primarily upon Black people —- Botswana comes to mind —- as a point of comparison.

[gozur88]

>When US sociologists and political scientists talk about “systemic and structural racism” this is one of the manifestations.

Which has always bothered me, since there are other explanations (lifestyle habits, genetics, poverty) that would explain the difference, in whole or in part. It's a politically convenient assumption that goes contrary to Occam's Razor.

[blaurenceclark]

I'm going to quote what someone said below because this is blatantly false

"This is not only false, but dangerously false. We are in the process of discovering that certain classes of popularly-prescribed drugs (eg ACE inhibitors for blacks, certain chemotherapy drugs for Asians) are ineffective or even toxic for populations not represented in the relevant drug development research cohorts. It's not identity politics to note that pharmacokinetics can differ between individuals and populations. These differences do not explain all of the population-level morbidity and mortality differences between ethnicities, but they are significant when investigating differences between groups on the same course of treatment."

[gozur88]

... which is why I listed genetics under "other explanations". Did you read the whole comment?

[idrios]

Nothing you've said seems wrong to me, but the tone of how you write is too dismissive.

> since there are other explanations (lifestyle habits, genetics, poverty) that would explain the difference, in whole or in part.

This doesn't contradict the meaning of "structural, systemic racism", but it explains it. When pharmacies are making drugs that are only effective for white people, and not researching effectiveness on black people, that's structural racism almost by definition.

Obviously pharma companies are responding to financial incentives, and if it's not profitable for a company to research treatments specifically helping a minority group then they're probably not going to. Less availability of pharmaceuticals makes treatment harder, causing what is available more expensive or leading to complications that require more further medical treatment (and cost more money); and those who choose not to get treatment will find themselves with further medical conditions later. In the end it would cost the minority more money, which they likely cannot pay for other systemic reasons, so more often they would be denied access to a hospital outright. Everyone involved is responding to natural incentives, but the net result still becomes [minority group] is neglected because of the color of their skin.

> Did you read the whole comment?

When you write like this it feels like you're attacking the character of the person you're talking to, which makes the whole conversation more toxic to follow.

[blaurenceclark]

Your assumption seemed to be that genetics didn't tie to ethnicity, which it is hence I restated it.

[gozur88]

I don't know why you would have thought that. Is it not obvious the physical aspects of what we call "race" are a collection of genetic expressions?

When you say "your assumption seemed to be" aren't you really talking about your own assumptions about what I'm thinking (but didn't write)?

[gefh]

It's not that there aren't genetic differences - it's that there is structural racism that means drug trials don't even test safety for minorities.

[malyk]

I just finished reading "Color of Law", which, while not the best formatted book, gives a really really good overview of the systematic, government led, programs designed and enforced explicitly against african americans from the late 1870s until the 1980s. It's a pretty quick read and well worth it for anyone who thinks that "systematic racism" isn't real.

https://www.amazon.com/Color-Law-Forgotten-Government-Segreg...

[cadlin]

Black people have worse health outcomes controlling for obesity and poverty.

Blaming genetics for such a wide range of negative outcomes is silly if you're looking for a simple explanation. Consider this[1] paper on cervical cancer. There are nine different genes linked to it. Now do that for every relatively worse health outcome. That's the opposite of simple.

Lifestyle is even more nebulous. It encompasses so much that suggesting it's a kind of verbal jujitsu to suggest it's an adequate use of Occam's Razor. There are hundreds of lifestyle factors and you can weight them however you want to get the result you want.

All of those are about as broad and as simple as racism, which you appear to categorically disregard as a plausible explanation.

[1]https://www.ncbi.nlm.nih.gov/pubmed/19347305

[infosample]

Occam's Razor: among competing hypotheses, the one with the fewest assumptions should be selected.

You dismissed one assumption and named three more. Please explain which applies to Occam's razor.

If you can then explain how your selection isn't related to structural racism and isn't politically convenient for you, I'd appreciate it.

[gozur88]

>You dismissed one assumption and named three more. Please explain which applies to Occam's razor.

Because there is a direct correlation between observable characteristics like obesity and poverty to health outcomes for people of all races. If a fat, poor white woman in Appalachia has heart problems in her 40s and receives low quality care, is that a result of systemic racism?

And as others have pointed out, we don't know the entire scope of genetic effects, but we know they exist to some degree (which was the whole point of the article).

[forapurpose]

> a politically convenient assumption

The centuries-long existence of slavery, segregation (which was brutal oppression, including lynching), and racism isn't an "assumption", but indisputable fact. Occam's Razor is not a real arbiter of truth, but in this case it cuts the other way: Racism is the simpler and blazingly obvious explanation, backed by endless reearch and even the most casual observation. You really have to work to contrive explanations that don't include systemic and structural racism.

> poverty

Another outcome of those centuries.

[gozur88]

>Racism is the simpler and blazingly obvious explanation, backed by endless reearch and even the most casual observation.

Things that are wrong can be obvious to individuals and groups of people. It's certainly not obvious to half the country, and that "endless research" is tainted. How long do you get to keep your job in academia if you point out the primary drivers of black misery in the US (out of wedlock births, drugs, and violence) are self inflicted?

[romwell]

> How long do you get to keep your job in academia if you point out the primary drivers of black misery in the US (out of wedlock births, drugs, and violence) are self inflicted?

To "point out" something (in academia or elsewhere), that something must be a fact.

[forapurpose]

> It's certainly not obvious to half the country

It's certainly obvious to the most of the U.S., and facts are not subject to a popularity vote regardless.

> "endless research" is tainted

Easily said, but completely unsubstantiated

> How long do you get to keep your job in academia if you point out ...

Can you substantiate that such a thing is true, and then answer your question? One thing that will lose you your job in academia is making intellectually weak, baseless claims. Academia doesn't run an affirmative action program to include all political ideologies; you have to actually have evidence and good arguments.

[tbrownaw]

facts are not subject to a popularity vote

I seem to recall "scientific consensus" being important on certain things?

[aperrien]

> How long do you get to keep your job in academia if you point out the primary drivers of black misery in the US (out of wedlock births, drugs, and violence) are self inflicted?

It's almost as if the sins of the past affects the lives of people in the present somehow.

[gozur88]

It's almost as if people like to use the sins of others long dead to excuse their own shortcomings.

In any event, if free will isn't a thing, there's no point in trying to make the world a better place, right, so we should just leave things as they are?

[matthew3]

Something like the negative effects of concentrated poverty seems to fit Occam's Razor well enough. "The most obviously-shared attribute amongst clusters of extremely poor minorities across the country is the clustering of poverty, and here are some potential causal ways this can lead to different lifestyle habits, different levels of education, different access to health care, etc."

That seems way more likely to me than oft-hinted-at-by-the-"politically-incorrect" "here's a cluster of people who all made the same bad decisions or were victims of the same bad luck in the same way, for no underlying reason other than genetic factors also associated with the color of their skin." That's pretty damn "politically convenient" if you're not in the minority population, too - "hey guys, it's not our fault! They just suck!" Hard to imagine something more politically convenient to the lucky than that.

[Banthum]

>That in general the well being of Native peoples in the US, of African Americans is devalued. It is witnessed in the exclusion in drug trials, in the diseases that pharma considers worthwhile to address...

Speaking about medical research specifically:

You seem to say these outcomes are because of white racists "devaluing" black and native peoples' well-being in an evil act of collective racism.

A simpler explanation would be: There are far fewer blacks and natives than whites in America, which means fewer sick people to help and fewer customers, which means their unique illnesses get less research focus.

The same effect happens between common diseases and rare diseases irrespective of race. Common diseases get studied first, because that's where the most good can be done. This isn't because the well-being of people with rare diseases is "devalued".

Frankly I'm concerned you jump so quickly to a mass accusation of collective racial evil (which echoes historic hatred against other high-performing ethnic groups) when a simpler explanation is so obvious.

[tptacek]

When people try to explain why you're coming to broken conclusions due to broken reasoning, they get attacked as radical leftists for using the straightforward terminology we have for describing the phenomenon we're discussing.

Here, you've provided a perfect illustration of why we have the term "structural racism". Structural racism is the emergent discrimination arising from the circumstances that created our status quo. You'd think an audience of computer scientists would have an especially good intuition for emergent systems properties.

Here's a simple explanation for how African Americans can be discriminated against in health care without any of the doctors or nurses involved having overtly racist impulses:

Until the nineteen seventies --- within many of our conscious lifespans! --- African Americans were actively, overtly, deliberately discriminated against in real estate. They were redlined out of white neighborhoods and into low-income neighborhoods. Naturally, once real estate lenders would allow them to buy houses in any neighborhood they wanted, African Americans of means began buying houses anywhere they wanted. Unlike low-income "white" people, low-income "black" people were stuffed into neighborhoods that were first deliberately underfunded, and then further disinvested by the vicious cycle of neighborhood flight ---- like a run on a bank.

The hospitals, doctors offices, pharmacies, and medical service providers available in those neighborhoods are poorer than those in white neighborhoods due to disinvestment.

The unbelievably awful people who designed and executed on redlining are probably long retired by now. Many of them are no doubt deceased. Most of us would recoil from racial barriers in real estate lending. We all believe ourselves to be well-intentioned. Samuel L. Jackson has a retort our best intentions.

[BearGoesChirp]

Grandparent has been deleted and I can't see it, so I'm not sure what their post was, so I'm aiming this response in more at the terms being used and their underlying meaning.

>When people try to explain why you're coming to broken conclusions due to broken reasoning, they get attacked as radical leftists for using the straightforward terminology we have for describing the phenomenon we're discussing.

How much of this is caused by people have past experience with selective application of different lines of reasoning.

For example, use the legal's systems racial and sex based discrimination. If we look at racial discrimination, it should be pretty clear that minorities have it much worse than whites. And there is a lot of research on this. If you then look at it based on gender, it appears there is even stronger discrimination based on gender than on race, with males much worse off than females (and a minority male receiving the worst of each). But the treatment of this online seems quite different. While it is a personal anecdote, on multiple occasions I've been told the racial discrimination is caused by structural racism against minorities that treats them worse than whites at every step on the system (from being more likely to be stopped and searched, to being more likely to be convicted given equal evidence, to receiving harsher sentences), and then being told that the gender discrimination is caused by sexism against women, resulting from the legal system treating women as children every step of the way (meaning they are less likely to be stopped and searched, less likely to be convicted, and receive less time). These seem like polar opposite lines of reasoning, yet I've seen both used as the same time.

I think it is at this point you get people who become opposed to the underlying reasoning because it appears that the group using the reasoning is starting with an assumption and then picking the logic that best fits their assumption. And I think many of the people you encounter online who use this reasoning are doing just that. People of every political and other leaning like to manipulate data to fit their world view. Combined with a lack of exposure to the actual scientists who work on this it can paint people's view of the language. To say nothing of scientist being humans and thus there being examples of scientist being very non-scientific about some issue (while I don't know of any examples on this particular issue, I did read through case of correspondences published in a scientific journal dealing with classification of certain behaviors as mental illnesses where some scientist were making some very indefensible arguments concerning evolution of which numerous counter examples were available that basically boiled down to "there is no way trait X evolved because it isn't reproductively advantageous in our environment").

And to be clear on my own stance, I do think that systematic racism exists in our current system, including in sub-systems where there are no racist members. There are agent models that show with even a small in-group bias, completely devoid of any out-group bias, you can have a system where out-group bias is apparent. For example, a system of entities of type A and B where A's has a certain preference for grouping with other A's, but no preference for not grouping with B's, ends up behaving similar to a system where A's have a preference for not grouping with B's.

[pvg]

Grandparent has been deleted and I can't see it

Go to your HN profile and turn 'showdead' on. It hasn't been deleted, users flagged it.

[BearGoesChirp]

Oh, I thought it was something depending upon getting a certain rep and I hadn't hit it yet. Thanks.

[dragonwriter]

> These seem like polar opposite lines of reasoning,

The problem is you are viewing them as reasoning about the cause from the effect alone rather than reasoning about the cause from a combination of the effect and masses of historical evidence.

[blaurenceclark]

You completely missed the point. I specifically put statistics in my article to refute this.

In many clinical trials African Americans that contract various conditions at the same rate or higher than White Americans represent only 1% of the clinical trial versus 15% of the population. While 95% of the trial are White Americans but they are only 60% of the population. There is clearly a disparity here.

I also use the word "Neglect" they haven't recently purposefully ignored minorities (although in the past they did), But the people that want to run the trials put the trials in the neighborhoods (read mostly white populations) that they have worked with before and want to cover. Therefore trials aren't being run where Minorities live.

This is where the "systemic racism" comes into play.

[arionhardison]

> Frankly I'm concerned you jump so quickly to a mass accusation of collective racial evil (which echoes historic hatred against other high-performing ethnic groups) when a simpler explanation is so obvious.

Do you live in America? Are you familiar with US history? If both of these are true then I dont understand why its so hard for you to grasp the fact that much of this was done out of malice.

https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment - I guess you think this was a "mistake" too?

[ekianjo]

> Japan, China, South Korea for example does their own drug testing and development so would they find that a particular drug doesn't work on their population at all?

Yes, it happens sometimes that certains drugs approved in the US fail to make it in Japanese clinical trials. Recent one I can think of is Prozac:

https://clinicaltrials.gov/ct2/show/NCT01808612

It did not show to be better than Placebo in the Phase3 Japan trial. (https://clinicaltrials.gov/ct2/show/results/NCT01808612?sect...)

There could be multiple reasons for that, but in the end the drug is not approved in Japan.

[blaurenceclark]

We haven't done extensive research in populations outside of the United States, but for the last 50-100 years the US (and Europe) has been leading the charge, but in both these locations, Minorities have been a low percentage participation in research.

As well, many of these outcomes he mentioned are the indirect result of years of research. Think of diabetes, 100 years of research was 99% spent on a white population and that contains prevention, diagnosis, and treatment. Populations that aren't white begin to see detrimental effects that add up over time.

[Alex3917]

> We haven't done extensive research in populations outside of the United States, but for the last 50-100 years the US (and Europe) has been leading the charge

I'm confused, I thought that over the last ten years a lot of the medical research formerly conducted by U.S. pharma companies has been outsourced to SROs, who in turn test their drugs on poor people in India or whatever. Is that not actually the case?

[blaurenceclark]

That only happens for certain drugs, typically treatment naive diabetes, IBD and other chronic disease patients where in the US there’s a standard treatment the patients receive right away so they have to go overseas to find untreated patients. That being said often those treatments will still have to come back to the US to run trials later on for approval on the population here.

[pkaye]

So none of the asian countries (for example SK or Japan) retest the drugs on their own population before approval for use?

[blaurenceclark]

There is a much longer answer to that question. SK and Japan only make up 5% of the asian population, many parts of asia are not well tested for these drugs. We're actually in the process of working with a large pharmaceutical company on a multi-country diabetes prevention trial in Asia because traditionally they have not been tested on as much as necessary. As well the companies there will run many of their trials in the US as well as Asia but our larger population (as well as running the trials in mostly white continents such as Australia and Europe) still causes quite a large discrepancy. We could do a whole other article on this topic.

[hrktb]

Japan retests, and interestingly recreates the same problems in a local way.

Taking medical checks for foreigners or minorities in japan means the guidance numbers are mostly irrelevant. Doctors might not know very well how to deal with you, a lot of advice for common but non critical illness can be summed up to “you do you”

[ekianjo]

> Minorities have been a low percentage participation in research.

That's not true at all if you consider PMS (Post Marketing Studies) which are an integral part of clinical development post launch.