So much here to process - and I so want to. As a 2x cancer survivor, who has lost others to cancer, I know a fair amount about that subject matter, but where I am balanced on the brink of an exquisite indecision is whether we are ready for a discussion about what race is as it might affect disease outcomes.
Are we ready to move on from the DEI chorus in order to evaluate the worldwide issues in cancer treatment outcomes across races in ways that are scientifically rigorous? Factually we have known a lot about what needs studying for over 15 years: https://ascopubs.org/doi/full/10.1200/JCO.2006.06.7918 . I will spot discrimination one claim: US clinical trials rarely include folks with lower socio economic status or who are in a group unlikely to have a cancer. Lower socio economic status has a high correlation with a lack of technical skills to give meaningful feedback and a large number of comorbidities, so the slots may be filled with folks who are not going to be good at discovering if the drug on trial is safe and effective. The bias against including folks who are rare victims of a cancer comes from the idea that the patient may introduce a rare random cancer factor, that might send care for most folks down the wrong track.
To give that some context. Male breast cancer is rare; putting men with breast cancer in an early clinical trial may introduce a random and poorly understood factor that isn't useful for determining if a drug should go forward with more testing for safety and effectiveness. There are ways of tiering the clinical trials to solve some of these issues. I did a clinical trial after definitive treatment for my second cancer, because they were recruiting female patients to balance out their final presentation (the researchers ARE trying); it was grueling in the amount of extra testing and record keeping required. I was delighted to take the risk and do the work, because of where I was in life and what I had received from medicine. I would have counseled against it for someone who had an hourly job, children at home or a life expectancy of more than 25 years. That's just one drug and one person. The plural of anecdote is not data, but it is an aspect that we should be willing to look at
I hope we are ready to decide that DEI was a splint/cast, but that going through life with a healthy leg being immobilized is not the way to win any race worth running.
So much here to process - and I so want to. As a 2x cancer survivor, who has lost others to cancer, I know a fair amount about that subject matter, but where I am balanced on the brink of an exquisite indecision is whether we are ready for a discussion about what race is as it might affect disease outcomes.
Hispanic is a term where it is easy to demonstrate the baked in fallacies. Legally Brazilians are not Hispanic, because they do not come from a Spanish speaking country. However, they self identify as and are, for non census bureau purposes, Hispanic. See https://www.pewresearch.org/short-reads/2023/09/05/who-is-hispanic/. My son-in-law, from Guatemala, is treated as Hispanic, even though the majority of his genes show up as Mayan. It's not easier to draw clear lines with African Americans, just more DEI dangerous to do so: https://reason.com/volokh/2020/08/11/is-kamala-harris-legally-african-american-indian-both-neither-or-something-else/ .
May we talk about what we ask these race labels to be proxy for, without being called a racist for identifying a confounding factor? Are we ready to go back and talk about Justice Jackson's dissent in the affirmative action case, which relied on a factually flawed amicus brief about infant mortality? We touched on it here a bit at the time, IIRC. The WSJ had the most detailed explanation, but not all readers may have access behind the WSJ paywall, so here's a link to a discussion of the problem that is not pay walled: https://jonathanturley.org/2023/07/07/crunching-the-numbers-does-justice-jacksons-dissent-on-affirmative-action-not-add-up/. There was also a follow up article: https://jonathanturley.org/2023/07/31/justice-jackson-accused-of-second-glaring-false-claim-in-affirmative-action-dissent/.
Are we ready to move on from the DEI chorus in order to evaluate the worldwide issues in cancer treatment outcomes across races in ways that are scientifically rigorous? Factually we have known a lot about what needs studying for over 15 years: https://ascopubs.org/doi/full/10.1200/JCO.2006.06.7918 . I will spot discrimination one claim: US clinical trials rarely include folks with lower socio economic status or who are in a group unlikely to have a cancer. Lower socio economic status has a high correlation with a lack of technical skills to give meaningful feedback and a large number of comorbidities, so the slots may be filled with folks who are not going to be good at discovering if the drug on trial is safe and effective. The bias against including folks who are rare victims of a cancer comes from the idea that the patient may introduce a rare random cancer factor, that might send care for most folks down the wrong track.
To give that some context. Male breast cancer is rare; putting men with breast cancer in an early clinical trial may introduce a random and poorly understood factor that isn't useful for determining if a drug should go forward with more testing for safety and effectiveness. There are ways of tiering the clinical trials to solve some of these issues. I did a clinical trial after definitive treatment for my second cancer, because they were recruiting female patients to balance out their final presentation (the researchers ARE trying); it was grueling in the amount of extra testing and record keeping required. I was delighted to take the risk and do the work, because of where I was in life and what I had received from medicine. I would have counseled against it for someone who had an hourly job, children at home or a life expectancy of more than 25 years. That's just one drug and one person. The plural of anecdote is not data, but it is an aspect that we should be willing to look at
I hope we are ready to decide that DEI was a splint/cast, but that going through life with a healthy leg being immobilized is not the way to win any race worth running.