In more social/cultural discussions of genetics and race, there are often different assertions on various sides that race does or does not imply a specific definable genetic makeup. How might that contrast with the more medically focused approach and use of the term minorities with work of HDP Health?

Actually environmental factors are a big portion of clinical research. Most people think of just the precision medicine approach, but often taking in environmental factors and developing treatment plans that take that into account are a big part of clinical research, and most of the envioronmental/cultural focus on this has been toward white american culture.

While we "focus on medical" clinical research isn't just testing new drugs, it's determining if one diet is better than other, it's finding prevention mechanisms and much much more. We work with any center that is running any type of research. And while we focus mostly on cancer treatments (70% of research dollars are spent here) we're building technology and want to expand to cover all types of clinical research as we grow.

Which would have a better outcome:

(1) Identify various medications that are most likely to be effective between the different races

or

(2) Identify the differences between the races that is causing various medications to not be effective

Honestly I have no idea which would have a better outcome, but I know both would have a great impact. My assumption would be the second one if I had to pick though, for example as an African American I have a sickle-cell trait and thus I shouldn't have kids with someone who also has that trait, and African American's in general have a higher likelihood of that trait. This is fortunately one of the well understood minority cases and therefore I can take action on it, but for many other genetic/ethnic dispositions to harm, they are quite unknown.

If I ever figure out which would be better I'll let you know! Or if someone else chimes in.

Since development of medications is such a heavily regulated industry, it seems to me the correct course of action is through regulation. Require a testament of some sort of the drugs' tested effects on different races. Or maybe require that test groups be representative of the population.

110% agree. The government has actually had a mandate out for publicly funded research since 1993, but only have enforcement rules been enacted and we have yet to see if they will be followed through on.

For research done by private institutions (Pharma, Biotech, etc.) there is no mandate and it's on the researcher to make it a thing.

* All Minorities, not one minority, and technically I believe all funded research should reflect the populations that exist rather than focusing on one, and take the various genetic backgrounds into account when developing treatments.

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.

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.

Mathematically, if no population is a majority, then the country is 100 percent minority.

You might be hang up on the additional narrative attached to the word “minority”. Consider using “underpriviledged ethnic group", as a. not even today all ethnic groups are equal and b. it is entirely possible some other ethnic group to raise to demographic majority status, and still exhibit the socioeconomic characteristics of a poor population.

Or maybe words are imprecise and fluid and the majority of people understand the intended message even if it's "technically incorrect".

>You might be hang up on the additional narrative attached to the word “minority”.

You can't separate words from their "additional narratives" and expect all people to understand what you're attempting to convey. The context and connotation around words is absolutely necessary for communication, and to eschew it leads to poorer communication.

All of these semantic games miss the point of the term "minority". It's not meant to mean "numerical minority"; it's meant as a euphemism for "non-white person". When you read it that way, all of these terms make sense.

It’s not ridiculous. It means that by 2044, estimates are that over 50% of the population will be part of a minority group, and the largest single group (whites) will no longer be a majority of the population. The minority groups will individually still be smaller than the largest group.

This is a very US-centric view of things. Worldwide, whites are the smallest minority, and they are the only group to be shrinking. The largest group is of course Asian.

Yes, it is a very US-centric view, because we're talking about the US.

And I agree with all of those statements, but phrased as it is now, it's blatantly wrong.

I read the quoted statement as I wrote it. So I strongly disagree that it is wrong. And: please be more civil. See the guidelines: https://news.ycombinator.com/newsguidelines.html

Incorrect, the actual definition is "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.

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.

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".

When you're main concern is "What is a minority" rather than "minorities are dying" that is very indicative of the problem still existing

I agree with your mission statement.

It's important to match the demographics of the population with the demographics of trial users. It's important to prevent as many deaths as we can.

It's important to account for differences between groups when you're developing healthcare.

But please, don't mangle mathematical terms.

>When you're main concern is "What is a minority" rather than "minorities are dying" that is very indicative of the problem still existing

You have just demonstrated what is called "attribution of intention" (as in you attributed an intention to the other person), which is a good indicator of a conversation going south.

(More general bias is "attribution bias")

HN guideline:

>Please respond to the strongest plausible interpretation of what someone says, not a weaker one that's easier to criticize. Assume good faith.

I would of said it this way, "No racial group is predicted to be over 50% of the overall population in 2044"

You have a typo under "How does this work as a patient?": "You can simply visit our Find a Triala> page", pretty sure you don't want the "a>" there.

Thank you!!

I'm a machine learning researcher, currently working on robust models (i.e. models that handle outliers properly). More traditional statistics has good techniques for making models robust, but current machine learning techniques do not.

Do you have any thoughts on how improvements in these sorts of machine learning algorithms could make clinical trials more fair? I ask because you specifically mention that HDP uses AI in the article.

Actually the AI portion of our product is mostly for making clinical trial recruitment more efficient, although we consciously add demographic tweaks to our algorithms to help identify specific patient populations that many researchers simply don't think about.

What we are also working on to make things more fair is helping open critical clinical trials in areas where there is a higher density of minority populations, as well as using demographic data in identifying where minority patients exist that match up to the latest clinical trials to prove to pharma companies that opening them in those areas is not only a moral improvement, but a financial one as well. (Disclaimer we do all of this de-identified).

Would definitely be great to have a larger discussion on this topic!

Are you also planning to include pregnant women in your trials?

I'm not in the health field, so I don't know where the regulations stand, but I recall talking to someone who was advocating for this a couple of decades ago to avoid future cases like Thalidomide.

I could write a whole other article on this as well. The pregnant women part actually fits extremely well in this context even more so, they aren't neglected, they are specifically left out because researchers don't want to have to explain their outliers. I'm a proponent of that, but the sponsors have to front the costs to make it happen, without a government mandate that gets very tricky.

Is the answer to this problem simply more minority volunteers in clinical trials?

More minority volunteers, and having clinical trials where minorities go to for care. Great example is most of the well funded academic institutions that run research are in affluent, mostly white neighborhoods, so if a (for assumption) poor minority wanted to participate, its not likely that the clinical trial would be available near them.

If I were to cover every one of the points you called out in detail (which are all valid) I'd end up with an entire book haha.

Acknowledged. I actually have a few (of those books). More so raised the points to be objective and for those who don't know any better.

Serious question though, is there much (U.S.) interest (define it as you wish) in this subject? Or is this more a passion project and attempt to raise awareness. (I'll understand if you duck the question for various reasons.)

* Bonus historical example... Department of Energy (along w/ various universities et al.) and the radioactivity 'experiments' on unwilling/unknowing citizens of 'little importance'. Clinton issued an 'apology' at some point. Don't remember the specifics and don't feel like looking them up now.

There is actually a push here (ignoring mandated public funded trials) because the Minority populations are becoming large enough that if a diabetes drug that was better in black people existed there’s a massive underserved customer base. Follow the money...

Thanks for responding.

I suppose I shouldn't be surprised, but I assumed that this sort of thing would have more traction outside of the U.S, which would then sort of (maybe) jump on the bandwagon.

> the points you called out in detail (which are all valid)

Do you really want to say this is valid?

https://news.ycombinator.com/item?id=16129426

> the outcome is more a feature than a bug

What outcome is a feature? You seem to be saying that the outcome that minorities are dying is a feature, but I strongly suspect that the comment just needs clarification.

There are many ways of solving inconvenient 'problems'.

Your ambiguity implies you are indeed saying that minorities dying is feature.

> inconvenient 'problems'

Calling people dying "inconvenient" implies that at best you don't think it's serious. Putting "'problems'" in quotes, implies that you don't really think it's a problem.

Do you really want to say that deaths of people who are members of minorities is desirable, or at least not a problem?

Thank you for your interest.

Respectfully, I said what I wanted to say. Your interpretation of my posts is not necessarily correct. Yes, I am being circumspect.

You're not being circumspect, because what you said initially was clear. I gave you a chance to take it back, and you went further. Also, anyone who equivocates on something like that rather than simply condemning clearly is promoting the idea; for example, if a public figure spoke like you, nobody would doubt what they mean and they would lose their job.

I'm not much for spelling everything out.

The OP seemed to understand what I was saying. We engaged in civil discourse and I learned something. Seriously, did you digest our dialogue before you drew your conclusion about my post(s)?

Frankly, you jumped to a conclusion, and having read some of your other posts, I decided to respond as I did thinking that you might realize that your interpretation was wrong. Guess not.

Honestly, anyone familiar w/even a smattering of (past or present) American approaches to science/medicine involving "minorities" shouldn't be responding the way that you are.

> or example, if a public figure spoke like you, nobody would doubt what they mean and they would lose their job.

Guess, we'll be talking about President Pence any day now, right? Suppose, Woodrow Wilson's name will be taken off of all those schools and other buildings currently named after him, right? No more reverence for "Indian Killer" Andrew Jackson?

You are entitled to your opinion, but your opinion is not automatically fact.

Hope that clears things up for you a bit.

Cheers.

Please don't do this here.

I'm sorry. Do what?

Please don't: (1) troll HN by making veiled references to outrageous things; (2) post unsubstantive comments, such as ones that go on about how you do or don't like to comment and how other people fail to appreciate this; (3) use HN for political or ideological battle, or for flamewars.

https://news.ycombinator.com/newsguidelines.html

What's the relevance of the minority status?

Would a drug proven effective for whites and ineffective for blacks in the US suddenly become effective for blacks and ineffective for whites if administered in Zimbabwe?

Or do you mean "minorities" in the "there are too many minorities in my waterpark" sense?

The article mentions in the first sentence that it is about North America. So presumably it is talking about specific apparent population groups that are minorities in North America? With this in mind, you can probably imagine some examples. But the first sentence does include some, if you're unfamiliar with America.

It would mean that if a drug was inefficient on an African American of Zimbabwe descent, the same drug would be unlikely to be efficient on the black people Zimbabwe. There are measurable genetic traits these can be attributed to, although unfortunately they are less understood for minority populations.