10 ms·

How Neglecting Minorities in Medical Research Has Led to Deadly Outcomes

171 points by blaurenceclark 9y ago

m1el 9y ago
> With more than 50 percent of the population estimated to be a minority by 2044 "Hi, I'm Brian Clark and I don't know what 'minority' means"
- trentmb 9y ago
  1/3 + 1/3 = 2/3
  - m1el 9y ago
    By your own logic, the "majority" is going to be 1/3, which is self-defeating.
    - azernik 9y ago
      That just means that there is no majority.
      - m1el 9y ago
        Then there's no minority either, so the word "minority" is not applicable. No matter how you look at it, the statement is absolutely ridiculous.
      - blaurenceclark 9y ago
        The actual phrase is "Majority minority" https://en.wikipedia.org/wiki/Majority_minority https://en.wikipedia.org/wiki/Majority_minority
    - blaurenceclark 9y ago
      Incorrect, the actual definition is "Majority minority" https://en.wikipedia.org/wiki/Majority_minority https://en.wikipedia.org/wiki/Majority_minority
    - trentmb 9y ago
      No.
- deleted 9y ago
  [deleted]
- bertjk 9y ago
  I think the simplest fix to this sentence is to pluralize the word "minority." "With more than 50 percent of the population estimated to be minorities by 2044,..." No need for verbosity or weird terms that require a trip to Wikipedia.
citricsquid 9y ago
https://www.propublica.org/article/nothing-protects-black-women-from-dying-in-pregnancy-and-childbirth https://www.propublica.org/article/nothing-protects-black-wo... This is a longer article on the subject of poorer health outcomes for minorities, covering the situation for black women and one family's experience, which is very much worth reading, but here are the key points: Statistics: * A black woman is 22% more likely to die from heart disease than a white woman * ...71 percent more likely to perish from cervical cancer * ...243 percent more likely to die from pregnancy- or childbirth-related causes Reasons: * Black women are more likely to be uninsured outside of pregnancy, when Medicaid kicks in, and thus more likely to start prenatal care later and to lose coverage in the postpartum period. * The hospitals where they give birth are often the products of historical segregation, lower in quality than those where white mothers deliver, with significantly higher rates of life-threatening complications. * [Black women] are more likely to have chronic conditions such as obesity, diabetes, and hypertension that make having a baby more dangerous. * Black expectant and new mothers frequently told us that doctors and nurses didn’t take their pain seriously [...] numerous studies that show pain is often undertreated in black patients for conditions from appendicitis to cancer. * An expanding field of research shows that the stress of being a black woman in American society can take a significant physical toll during pregnancy and childbirth. * Black women are 49 percent more likely than whites to deliver prematurely (and, closely related, black infants are twice as likely as white babies to die before their first birthday).
- deleted 9y ago
  [deleted]
- pkaye 9y ago
  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?
blaurenceclark 9y ago
I'm the founder of HDP Health, if you have any questions or want clarifications please ask away!
- m1el 9y ago
  Do you find the opening statement "With more than 50 percent of the population estimated to be a minority by 2044" ridiculous? When did we start ignoring what words mean? That's not what the word "minority" means. There's many ways you can rephrase it and still be correct, mind you.
  - blaurenceclark 9y ago
    Incorrect, the actual definition is "Majority minority" https://en.wikipedia.org/wiki/Majority_minority https://en.wikipedia.org/wiki/Majority_minority and yes those of us that are currently Minorities, would still be considered minorities in such a case.
    - deleted 9y ago
      [deleted]
    - m1el 9y ago
      According to the definition, the term applies when local majority is country's minority. If you're no longer country's minority, you cannot be majority-minority.
      - wavegeek 9y ago
        This reminds me of a man in the UK, or African ancestry, but who had never been to Africa (or to the US). Americans repeatedly insisted on calling him an "African American".
  - blaurenceclark 9y ago
    No single group that is currently a "minority" would overtake the white population, therefore every other population in the US would still be considered a Minority until there is an equal or more number of a single minority than there are white Americans.
mcguire 9y ago
"Not only do minorities get asthma at a higher rate, but [UCSF] pulmonologist Dr. Esteban Burchard ... has found that ethnicity is the most important factor in determining if a patient will respond to asthma therapy. Unfortunately, for the most most commonly prescribed asthma medication, Albuterol, 67 percent of Puerto Ricans and 47 percent of African-Americans show no improvement when taking it, yet Albuterol works therapeutically for the vast majority of Caucasian patients." I did not know that. It's horrifying.
- deleted 9y ago
  [deleted]
- _rpd 9y ago
  Advances in personalized medicine can't come soon enough.
  - HarryHirsch 9y ago
    Cytochrome P450 is a family of closely related enzymes that are involved in drug metabolism. There are certain isoforms that have variants with wildly different activity in certain populations. In drug discovery we screen for their involvement and do not like to develop compounds that are metabolized by one of these isoforms because the variation in pharmacokinetics would be too huge. This is kind of the opposite of personalized medicine, making response uniform across the population. This article gives an overview: https://www.aafp.org/afp/2007/0801/p391.html https://www.aafp.org/afp/2007/0801/p391.html
    - Hendrikto 9y ago
      > This is kind of the opposite of personalized medicine, making response uniform across the population. Which is a far more pratical approach.
- tzs 9y ago
  It sounds horrifying, but actually is kind of meaningless as written. Imagine two worlds: World #1 (the horrible world): medical research neglects black people. They only bothered to develop an asthma treatment that works on white people. World #2 (the reasonable world): medical research is careful to make sure they cover all groups. They developed several asthma drugs. None works well across all ethnic groups, but there is a good one available for each ethnic group. In both of these worlds the most commonly prescribed asthma drug will be one that works on the vast majority of white people and does not work well on black people. What they need to include to make the point they are trying to make is how the less commonly prescribed asthma drugs do on different ethnic groups.
alexanderstears 9y ago
It's weird to frame this as 'neglect'. Some minority groups are uniquely distrusting of medical professionals (I'll cite this later when I'm not on a work network) - that's going to impair testing participation. In the past, medical researchers went out of their way to use minority test subjects and that's been understood to be more problematic than our volunteer-based system. The vast majority of medicine was developed in white and asian countries, it's not surprising that medicine is optimized for people in those clusters. And it's only unethical that it winds up this way if you think it's unethical for people to advance their self-interest. Personally, I think that motivates most of the research so I'd rather have medicine that isn't tailored for me than no medicine. I'm sure we can make things better, but to act as though any disparity is conclusive evidence of neglect/racism/prejudice/structural barriers isn't helpful and isn't going to get us any closer to improving medicine.
yipopov 9y ago
Good luck defending this as long as it's deemed political wrongthink to say there are any biological differences between races. If everyone is the same, why bother with diverse studies?
- albertgoeswoof 9y ago
  Biological differences are only one part, the socio-economic issues that lead to people being mistreated because of their race are a huge problem
- deleted 9y ago
  [deleted]
- blaurenceclark 9y ago
  Attacks from everywhere haha. I'll keep educating anyone I can on this until the day I die!
- petroseskinder 9y ago
  There's a lot of baggage with "race related medical research." At least within the US, it is currently deemed wrong think for a number of reasons. First, how are you defining race? The current American definitions of race are imprecise and sociologically constructed. Since the founding of America, the definition of white has expanded to include various groups that were previously excluded (e.g. Polish, Irish, Jewish people, Italians, Greek) [0]. As far as black/African Americans, the current definition (one drop rule) has its limitations. Sub-saharan Africa is not a monolith. It has been found that the genetic diversity between Sub-saharan African ethnicity groups exceeds other regions of the world [1]. Even as far as physical differences, there is a noticeable physical difference between a Tutsi from Rwanda, a Luhya from Kenya, an Amhara from Ethiopia, and a Yoruba from Nigeria. A very noticeable difference. I can't speak for their "genetic difference." However, it's large enough to warrant further investigation on what categories are used. This distinction is important moving forward. Since 1970, voluntary immigration from Africa has surged from the aforementioned regions [2], with many becoming first, and second generation Americans [3], the current racial assumptions and definitions are a tad archaic. This is just one racial group within the US. I didn't really even mention how ludicrous bucketing 60% of the world's population as "Asian" is. Second, and most importantly, the US does not have a great track record with biological research targeting black people, Native Americans, and other minority groups. There is a long history of medical abuse where researchers conduct experiments without the knowledge or consent of black patients. A few notable examples in recent history are the Tuskagee Syphilis Experiments between 1932 and 1972 [3] and DoD's non-consensual whole body radiation experiments on black cancer patients between 1960 and 1971 [4][5]. Even today, this sort of non-consensual racial medical experimentation has not stopped. As recently as 2013, Ethiopian Jews (immigrating from Ethiopia) in Israel were coerced into agreeing to injections of long acting birth control drugs by Israeli medical officials [6]. The apprehension is very much justified. > If everyone is the same, why bother with diverse studies? You're tone suggests that you don't understand why people are "dancing" around the subject and trying to be politically correct or whatever. I am under the impression that the American medical research community has, through its actions, fostered distrust in "racial" based medical research. Now, it's stuck in a bind, as a direct consequence of its actions. [0] https://en.wikipedia.org/wiki/Definitions_of_whiteness_in_the_United_States https://en.wikipedia.org/wiki/Definitions_of_whiteness_in_th... [1] cshperspectives.cshlp.org/content/6/7/a008524.full [2] http://www.pewresearch.org/fact-tank/2017/02/14/african-immigrant-population-in-u-s-steadily-climbs/ http://www.pewresearch.org/fact-tank/2017/02/14/african-immi... [3] https://www.bloomberg.com/view/articles/2015-10-13/it-isn-t-just-asian-immigrants-who-excel-in-the-u-s- https://www.bloomberg.com/view/articles/2015-10-13/it-isn-t-... [4] https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment [5] http://www.nytimes.com/2007/01/23/health/23book.html http://www.nytimes.com/2007/01/23/health/23book.html [6] https://goo.gl/BbpdhX https://goo.gl/BbpdhX [7] https://www.forbes.com/sites/eliseknutsen/2013/01/28/israel-foribly-injected-african-immigrant-women-with-birth-control/#57e3fc9367b8 https://www.forbes.com/sites/eliseknutsen/2013/01/28/israel-...
PaulHoule 9y ago
Part of it is a lack of financial incentives on the part of the drug companies. Most pharmaceutical research is aimed at marketing drugs. Take the example of hypertension, which is more prevalent among blacks than whites. At the moment, all of the major antihypertensive families are available as generic drugs. The best way to help black people quickly is to do a comparative study of drugs already on the market. No drug company is going to do that because they won't be able to capture the value if the drugs are generic. Maybe a drug company could try to develop a drug which is particularly good for blacks, but it will take a decade, may not work, won't sell as well (fewer people), and then it will be an expensive new drug and people will complain about the cost.
- blaurenceclark 9y ago
  That's 100% true, I'm not saying we have to create a new drug, but define what is the best treatments available, as well as take that into account when the treatments are being made. Especially as there become more black people if there is a treatment just for that minority it may be a quite profitable route for them. Further down in the comments somewhere I posted another comment where it's as simple as certain chemo's cause toxicity levels in Asians where they don't in white Americans. So simply lowering the dosage would fix the problem but because that wasn't involved in the original research it wasn't known for quite sometime and Asian populations suffered. When I say "focus on minorities for research" working any solution is fine, simple or not.
confuseddesi 9y ago
I did find the line at the top "With more than 50 percent of the population estimated to be a minority by 2044..." funny - doesn't that make them a majority?
- dragonwriter 9y ago
  Nope. Because it's not all the same minority. There will be no majority, and whites will (initially, at least) be a plurality.
gumby 9y ago
At least on the commercial side the FDA requires that your approval population (“treatment group”) be “representative” of the population who will receive the drug if it’s approved. So you can’t get away with, say, doing your study solely in Chad or Norway as their population distribution (except perhaps by sex) won’t match that of the USA.
burfog 9y ago
Suppose this wasn't the case. The news headlines would of course be "Experimental drugs being tested on minorities". That would be a PR disaster. It's safer to steer clear of minorities. Essentially, the drug companies can't win. People will find something to complain about. Either minorities are getting neglected, or they are being abused as lab subjects.
- harlanji 9y ago
  Life is full of these catch 22s and we've cultivated a society where being offended gets more utility than actally getting helped in some cases. People don't always know why they act, but coi bono examinations show that outrage wins for invisible people. 15 minutes of twitter fame vs forming an opinion and having to defend it hmmmmmmm
- blaurenceclark 9y ago
  I 100% disagree with everything you say here. For one, that is not a PR disaster as the headline you're using is one no one would ever use as it is insensitive. In fact what would happen is "New cancer treatment found to be more effective for minorities than previous treatments being test" would be a fabulous headline that would garner tons of support. Saying "steer clear of minorities" shows complete "superiority" complex and is indicative of why the problem exists.
- petroseskinder 9y ago
  > Suppose this wasn't the case. The news headlines would of course be "Experimental drugs being tested on minorities". That would be a PR disaster. Interesting. When you say suppose "this" wasn't the case, what do you mean by "this?" Do you mean the neglecting minorities in medical research leading to numerous negative consequences? From what I understand correctly, you are trying to state the negation of OP's headline. If so, it's unclear how you arrived at that specific headline. Can you walk me through your line of reasoning? > Essentially, the drug companies can't win. People will find something to complain about. That's quite a bleak forecast. Can you clarify what it means for drug companies to win? From my frame of reference, the game is the political arena, and a participant (or political entity) is "winning" if they can ensure they're interests and concerns are considered and upheld. Between 1998 and 2017, Pharmaceutical/Health product industry spent 3.7 billion dollars lobbying on capitol hill [0]. Interestingly, this was the highest amount spent by any industry. Moreover, it was 1.2 billion dollars more than the next highest industry, the insurance industry. If we examine just 2016 (and 2015), we see that Pharmaceutical Research & Manufacturers of America (PRMA) spent 19 million on lobbying [1], up about 1 million from the prior year. PRMA represents companies in the pharmaceutical industry, i.e. Big Pharma. It was surpassed in spending by the Blue Cross, American Hospital Association, Chamber of Commerce, and National Association of Realtors. Further down that list, we see Pfizer chipped in 9.7 million (up from 7 million in 2015), and the Biotechnology innovation organization chipped 9.2 million (up from 8.3 million in 2015). At least to me, this doesn't seem like the behavior of someone that is eliminated from a competition. If things weren't going right, I would likely cut losses and try alternative routes, not spend more. So it suggests they are satisfied with the influence they're dollar buys. Presumably, they are able to clearly communicate their interests and concerns to the decision makers on Capitol Hill. Moreover, they are able to communicate these interests and concerns _behind closed doors_ to receptive members of _both parties._ Perhaps my thinking is faulty, but to me, it seems like they're winning, i.e. influencing policy in their favor. > Either minorities are getting neglected, or they are being abused as lab subjects. Can you explain why these are the only two options? [0] https://www.opensecrets.org/lobby/top.php?indexType=i https://www.opensecrets.org/lobby/top.php?indexType=i [1] http://thehill.com/business-a-lobbying/business-a-lobbying/318177-lobbyings-top-50-whos-spending-big http://thehill.com/business-a-lobbying/business-a-lobbying/3...
dbdriscoll 9y ago
Great post, Brian, keep being awesome!

m1el 9y ago

> With more than 50 percent of the population estimated to be a minority by 2044 "Hi, I'm Brian Clark and I don't know what 'minority' means"

trentmb 9y ago
1/3 + 1/3 = 2/3
- m1el 9y ago
  By your own logic, the "majority" is going to be 1/3, which is self-defeating.
  - azernik 9y ago
    That just means that there is no majority.
    - m1el 9y ago
      Then there's no minority either, so the word "minority" is not applicable. No matter how you look at it, the statement is absolutely ridiculous.
    - blaurenceclark 9y ago
      The actual phrase is "Majority minority" https://en.wikipedia.org/wiki/Majority_minority https://en.wikipedia.org/wiki/Majority_minority
  - blaurenceclark 9y ago
    Incorrect, the actual definition is "Majority minority" https://en.wikipedia.org/wiki/Majority_minority https://en.wikipedia.org/wiki/Majority_minority
  - trentmb 9y ago
    No.
deleted 9y ago
[deleted]
bertjk 9y ago
I think the simplest fix to this sentence is to pluralize the word "minority." "With more than 50 percent of the population estimated to be minorities by 2044,..." No need for verbosity or weird terms that require a trip to Wikipedia.

citricsquid 9y ago

https://www.propublica.org/article/nothing-protects-black-women-from-dying-in-pregnancy-and-childbirth https://www.propublica.org/article/nothing-protects-black-wo... This is a longer article on the subject of poorer health outcomes for minorities, covering the situation for black women and one family's experience, which is very much worth reading, but here are the key points: Statistics: * A black woman is 22% more likely to die from heart disease than a white woman * ...71 percent more likely to perish from cervical cancer * ...243 percent more likely to die from pregnancy- or childbirth-related causes Reasons: * Black women are more likely to be uninsured outside of pregnancy, when Medicaid kicks in, and thus more likely to start prenatal care later and to lose coverage in the postpartum period. * The hospitals where they give birth are often the products of historical segregation, lower in quality than those where white mothers deliver, with significantly higher rates of life-threatening complications. * [Black women] are more likely to have chronic conditions such as obesity, diabetes, and hypertension that make having a baby more dangerous. * Black expectant and new mothers frequently told us that doctors and nurses didn’t take their pain seriously [...] numerous studies that show pain is often undertreated in black patients for conditions from appendicitis to cancer. * An expanding field of research shows that the stress of being a black woman in American society can take a significant physical toll during pregnancy and childbirth. * Black women are 49 percent more likely than whites to deliver prematurely (and, closely related, black infants are twice as likely as white babies to die before their first birthday).

deleted 9y ago
[deleted]
pkaye 9y ago
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?

blaurenceclark 9y ago

I'm the founder of HDP Health, if you have any questions or want clarifications please ask away!

m1el 9y ago
Do you find the opening statement "With more than 50 percent of the population estimated to be a minority by 2044" ridiculous? When did we start ignoring what words mean? That's not what the word "minority" means. There's many ways you can rephrase it and still be correct, mind you.
- blaurenceclark 9y ago
  Incorrect, the actual definition is "Majority minority" https://en.wikipedia.org/wiki/Majority_minority https://en.wikipedia.org/wiki/Majority_minority and yes those of us that are currently Minorities, would still be considered minorities in such a case.
  - deleted 9y ago
    [deleted]
  - m1el 9y ago
    According to the definition, the term applies when local majority is country's minority. If you're no longer country's minority, you cannot be majority-minority.
    - wavegeek 9y ago
      This reminds me of a man in the UK, or African ancestry, but who had never been to Africa (or to the US). Americans repeatedly insisted on calling him an "African American".
- blaurenceclark 9y ago
  No single group that is currently a "minority" would overtake the white population, therefore every other population in the US would still be considered a Minority until there is an equal or more number of a single minority than there are white Americans.

mcguire 9y ago

"Not only do minorities get asthma at a higher rate, but [UCSF] pulmonologist Dr. Esteban Burchard ... has found that ethnicity is the most important factor in determining if a patient will respond to asthma therapy. Unfortunately, for the most most commonly prescribed asthma medication, Albuterol, 67 percent of Puerto Ricans and 47 percent of African-Americans show no improvement when taking it, yet Albuterol works therapeutically for the vast majority of Caucasian patients." I did not know that. It's horrifying.

deleted 9y ago
[deleted]
_rpd 9y ago
Advances in personalized medicine can't come soon enough.
- HarryHirsch 9y ago
  Cytochrome P450 is a family of closely related enzymes that are involved in drug metabolism. There are certain isoforms that have variants with wildly different activity in certain populations. In drug discovery we screen for their involvement and do not like to develop compounds that are metabolized by one of these isoforms because the variation in pharmacokinetics would be too huge. This is kind of the opposite of personalized medicine, making response uniform across the population. This article gives an overview: https://www.aafp.org/afp/2007/0801/p391.html https://www.aafp.org/afp/2007/0801/p391.html
  - Hendrikto 9y ago
    > This is kind of the opposite of personalized medicine, making response uniform across the population. Which is a far more pratical approach.
tzs 9y ago
It sounds horrifying, but actually is kind of meaningless as written. Imagine two worlds: World #1 (the horrible world): medical research neglects black people. They only bothered to develop an asthma treatment that works on white people. World #2 (the reasonable world): medical research is careful to make sure they cover all groups. They developed several asthma drugs. None works well across all ethnic groups, but there is a good one available for each ethnic group. In both of these worlds the most commonly prescribed asthma drug will be one that works on the vast majority of white people and does not work well on black people. What they need to include to make the point they are trying to make is how the less commonly prescribed asthma drugs do on different ethnic groups.

alexanderstears 9y ago

It's weird to frame this as 'neglect'. Some minority groups are uniquely distrusting of medical professionals (I'll cite this later when I'm not on a work network) - that's going to impair testing participation. In the past, medical researchers went out of their way to use minority test subjects and that's been understood to be more problematic than our volunteer-based system. The vast majority of medicine was developed in white and asian countries, it's not surprising that medicine is optimized for people in those clusters. And it's only unethical that it winds up this way if you think it's unethical for people to advance their self-interest. Personally, I think that motivates most of the research so I'd rather have medicine that isn't tailored for me than no medicine. I'm sure we can make things better, but to act as though any disparity is conclusive evidence of neglect/racism/prejudice/structural barriers isn't helpful and isn't going to get us any closer to improving medicine.

yipopov 9y ago

Good luck defending this as long as it's deemed political wrongthink to say there are any biological differences between races. If everyone is the same, why bother with diverse studies?

albertgoeswoof 9y ago
Biological differences are only one part, the socio-economic issues that lead to people being mistreated because of their race are a huge problem
deleted 9y ago
[deleted]
blaurenceclark 9y ago
Attacks from everywhere haha. I'll keep educating anyone I can on this until the day I die!
petroseskinder 9y ago
There's a lot of baggage with "race related medical research." At least within the US, it is currently deemed wrong think for a number of reasons. First, how are you defining race? The current American definitions of race are imprecise and sociologically constructed. Since the founding of America, the definition of white has expanded to include various groups that were previously excluded (e.g. Polish, Irish, Jewish people, Italians, Greek) [0]. As far as black/African Americans, the current definition (one drop rule) has its limitations. Sub-saharan Africa is not a monolith. It has been found that the genetic diversity between Sub-saharan African ethnicity groups exceeds other regions of the world [1]. Even as far as physical differences, there is a noticeable physical difference between a Tutsi from Rwanda, a Luhya from Kenya, an Amhara from Ethiopia, and a Yoruba from Nigeria. A very noticeable difference. I can't speak for their "genetic difference." However, it's large enough to warrant further investigation on what categories are used. This distinction is important moving forward. Since 1970, voluntary immigration from Africa has surged from the aforementioned regions [2], with many becoming first, and second generation Americans [3], the current racial assumptions and definitions are a tad archaic. This is just one racial group within the US. I didn't really even mention how ludicrous bucketing 60% of the world's population as "Asian" is. Second, and most importantly, the US does not have a great track record with biological research targeting black people, Native Americans, and other minority groups. There is a long history of medical abuse where researchers conduct experiments without the knowledge or consent of black patients. A few notable examples in recent history are the Tuskagee Syphilis Experiments between 1932 and 1972 [3] and DoD's non-consensual whole body radiation experiments on black cancer patients between 1960 and 1971 [4][5]. Even today, this sort of non-consensual racial medical experimentation has not stopped. As recently as 2013, Ethiopian Jews (immigrating from Ethiopia) in Israel were coerced into agreeing to injections of long acting birth control drugs by Israeli medical officials [6]. The apprehension is very much justified. > If everyone is the same, why bother with diverse studies? You're tone suggests that you don't understand why people are "dancing" around the subject and trying to be politically correct or whatever. I am under the impression that the American medical research community has, through its actions, fostered distrust in "racial" based medical research. Now, it's stuck in a bind, as a direct consequence of its actions. [0] https://en.wikipedia.org/wiki/Definitions_of_whiteness_in_the_United_States https://en.wikipedia.org/wiki/Definitions_of_whiteness_in_th... [1] cshperspectives.cshlp.org/content/6/7/a008524.full [2] http://www.pewresearch.org/fact-tank/2017/02/14/african-immigrant-population-in-u-s-steadily-climbs/ http://www.pewresearch.org/fact-tank/2017/02/14/african-immi... [3] https://www.bloomberg.com/view/articles/2015-10-13/it-isn-t-just-asian-immigrants-who-excel-in-the-u-s- https://www.bloomberg.com/view/articles/2015-10-13/it-isn-t-... [4] https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment [5] http://www.nytimes.com/2007/01/23/health/23book.html http://www.nytimes.com/2007/01/23/health/23book.html [6] https://goo.gl/BbpdhX https://goo.gl/BbpdhX [7] https://www.forbes.com/sites/eliseknutsen/2013/01/28/israel-foribly-injected-african-immigrant-women-with-birth-control/#57e3fc9367b8 https://www.forbes.com/sites/eliseknutsen/2013/01/28/israel-...

PaulHoule 9y ago

Part of it is a lack of financial incentives on the part of the drug companies. Most pharmaceutical research is aimed at marketing drugs. Take the example of hypertension, which is more prevalent among blacks than whites. At the moment, all of the major antihypertensive families are available as generic drugs. The best way to help black people quickly is to do a comparative study of drugs already on the market. No drug company is going to do that because they won't be able to capture the value if the drugs are generic. Maybe a drug company could try to develop a drug which is particularly good for blacks, but it will take a decade, may not work, won't sell as well (fewer people), and then it will be an expensive new drug and people will complain about the cost.

blaurenceclark 9y ago
That's 100% true, I'm not saying we have to create a new drug, but define what is the best treatments available, as well as take that into account when the treatments are being made. Especially as there become more black people if there is a treatment just for that minority it may be a quite profitable route for them. Further down in the comments somewhere I posted another comment where it's as simple as certain chemo's cause toxicity levels in Asians where they don't in white Americans. So simply lowering the dosage would fix the problem but because that wasn't involved in the original research it wasn't known for quite sometime and Asian populations suffered. When I say "focus on minorities for research" working any solution is fine, simple or not.

confuseddesi 9y ago

I did find the line at the top "With more than 50 percent of the population estimated to be a minority by 2044..." funny - doesn't that make them a majority?

dragonwriter 9y ago
Nope. Because it's not all the same minority. There will be no majority, and whites will (initially, at least) be a plurality.

gumby 9y ago

At least on the commercial side the FDA requires that your approval population (“treatment group”) be “representative” of the population who will receive the drug if it’s approved. So you can’t get away with, say, doing your study solely in Chad or Norway as their population distribution (except perhaps by sex) won’t match that of the USA.

burfog 9y ago

Suppose this wasn't the case. The news headlines would of course be "Experimental drugs being tested on minorities". That would be a PR disaster. It's safer to steer clear of minorities. Essentially, the drug companies can't win. People will find something to complain about. Either minorities are getting neglected, or they are being abused as lab subjects.

harlanji 9y ago
Life is full of these catch 22s and we've cultivated a society where being offended gets more utility than actally getting helped in some cases. People don't always know why they act, but coi bono examinations show that outrage wins for invisible people. 15 minutes of twitter fame vs forming an opinion and having to defend it hmmmmmmm
blaurenceclark 9y ago
I 100% disagree with everything you say here. For one, that is not a PR disaster as the headline you're using is one no one would ever use as it is insensitive. In fact what would happen is "New cancer treatment found to be more effective for minorities than previous treatments being test" would be a fabulous headline that would garner tons of support. Saying "steer clear of minorities" shows complete "superiority" complex and is indicative of why the problem exists.
petroseskinder 9y ago
> Suppose this wasn't the case. The news headlines would of course be "Experimental drugs being tested on minorities". That would be a PR disaster. Interesting. When you say suppose "this" wasn't the case, what do you mean by "this?" Do you mean the neglecting minorities in medical research leading to numerous negative consequences? From what I understand correctly, you are trying to state the negation of OP's headline. If so, it's unclear how you arrived at that specific headline. Can you walk me through your line of reasoning? > Essentially, the drug companies can't win. People will find something to complain about. That's quite a bleak forecast. Can you clarify what it means for drug companies to win? From my frame of reference, the game is the political arena, and a participant (or political entity) is "winning" if they can ensure they're interests and concerns are considered and upheld. Between 1998 and 2017, Pharmaceutical/Health product industry spent 3.7 billion dollars lobbying on capitol hill [0]. Interestingly, this was the highest amount spent by any industry. Moreover, it was 1.2 billion dollars more than the next highest industry, the insurance industry. If we examine just 2016 (and 2015), we see that Pharmaceutical Research & Manufacturers of America (PRMA) spent 19 million on lobbying [1], up about 1 million from the prior year. PRMA represents companies in the pharmaceutical industry, i.e. Big Pharma. It was surpassed in spending by the Blue Cross, American Hospital Association, Chamber of Commerce, and National Association of Realtors. Further down that list, we see Pfizer chipped in 9.7 million (up from 7 million in 2015), and the Biotechnology innovation organization chipped 9.2 million (up from 8.3 million in 2015). At least to me, this doesn't seem like the behavior of someone that is eliminated from a competition. If things weren't going right, I would likely cut losses and try alternative routes, not spend more. So it suggests they are satisfied with the influence they're dollar buys. Presumably, they are able to clearly communicate their interests and concerns to the decision makers on Capitol Hill. Moreover, they are able to communicate these interests and concerns _behind closed doors_ to receptive members of _both parties._ Perhaps my thinking is faulty, but to me, it seems like they're winning, i.e. influencing policy in their favor. > Either minorities are getting neglected, or they are being abused as lab subjects. Can you explain why these are the only two options? [0] https://www.opensecrets.org/lobby/top.php?indexType=i https://www.opensecrets.org/lobby/top.php?indexType=i [1] http://thehill.com/business-a-lobbying/business-a-lobbying/318177-lobbyings-top-50-whos-spending-big http://thehill.com/business-a-lobbying/business-a-lobbying/3...

dbdriscoll 9y ago

Great post, Brian, keep being awesome!