1/28
A fellow #Spoutible user posted a news article about the overlooked history of Black slaves working in ironworks and foundries. Buried in the story was the issue of getting informed consent to use Black American DNA samples for the research. Here's this week's seditious CRT thread re: the IC issue.
07:00 AM - Aug 06, 2023
2/28
According to medical and legal historians, the 1st document to express a contract between a doctor and their patient appeared in 1767. I'm not a lawyer so I won't try to explain what was in the contract or the legal cases throughout history that strengthened it. Read here for more info. 👇🏾
07:05 AM - Aug 06, 2023
(Edited)
4/28
What I do know about informed consents is from my past work helping SC's Dept of Health and Human Services implementation of the super-ebhanced informed consent requirements of the ACA, aka Obamacare.
Pres. Obama and the Democrat-led Congress made sure that Black patients were ALWAYS protected.
Pres. Obama and the Democrat-led Congress made sure that Black patients were ALWAYS protected.
07:13 AM - Aug 06, 2023
5/28
There's a section of the ACA legislation that requires these informed consent minimums of every interaction you have with a medical provider or professional:
1. The patient MUST give consent for treatment before ANY interaction with ANY ENTITY associated with the treatment.
1. The patient MUST give consent for treatment before ANY interaction with ANY ENTITY associated with the treatment.
07:19 AM - Aug 06, 2023
6/28
When you go into a doctor's office for the 1st time, you're should be asked to sign at least 3 informed consents, if not more.
The 1st document asks you to give the doctor, their staff, and their facility a contractual right to talk with you about your health concerns, advise you, and treat you.
The 1st document asks you to give the doctor, their staff, and their facility a contractual right to talk with you about your health concerns, advise you, and treat you.
07:25 AM - Aug 06, 2023
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7/28
The 2nd informed consent document you're asked to sign when interacting with a new medical professional asks you to give them the right to share your medical information with the insurance provider you've given consent to receive your medical information.
This IC allows your doctor to get paid.
This IC allows your doctor to get paid.
07:29 AM - Aug 06, 2023
8/28
The 3rd informed consent you sign allows your doctor to share important medical info with others who may need to be involved with further diagnosis or treatment of your health concerns. This includes your pharmacist, a referred specialist, a rehab/care facility, a home healthcare service, etc.
07:33 AM - Aug 06, 2023
9/28
Doctors on #Spoutible are hopefully nodding their heads in agreement with what I've shared so far. Informed consents are comprehensive since the ACA. It's sometimes seen as a headache by patients, but it's a necessary contract to prevent something going terribly wrong between you and your provider.
07:38 AM - Aug 06, 2023
(Edited)
10/28
The other part of the ACA's informed consent section discusses the legal requirements for ensuring US patient subgroups (historically documented as being abused by the medical field) are given EVERY TOOL POSSIBLE to make sure they understand fully their informed consents.
What does this mean?
What does this mean?
07:44 AM - Aug 06, 2023
11/28
ACA requires that,
1. The informed consent must be read to you if you have a reading challenge.
2. The informed consent must be readily available in multiple languages.
3. A patient be allowed to strike through and initial any part of the document of which they don't agree.
Did you know this?
1. The informed consent must be read to you if you have a reading challenge.
2. The informed consent must be readily available in multiple languages.
3. A patient be allowed to strike through and initial any part of the document of which they don't agree.
Did you know this?
07:47 AM - Aug 06, 2023
(Edited)
12/28
07:53 AM - Aug 06, 2023
13/28
Most Americans know the medical stories of Henrietta Lacks and The Tuskegee Experiment. Many also now know about the gynecological experimentation on the Black enslaved woman named Anarcha.
Many Americans don't know about the medical terrors US researchers heaped on African-heritage Puerto Ricans.
Many Americans don't know about the medical terrors US researchers heaped on African-heritage Puerto Ricans.
07:59 AM - Aug 06, 2023
14/28
When the Tuskegee Experiment gained media attention in the 1970s(?), US medical researchers were bombarded with federal govt investigations into what was not taking place with the medical treatments Black Americans received in America. The lack of informed consents became the center of focus.
08:03 AM - Aug 06, 2023
15/28
Black Americans were newly being treated by formerly-segregated White hospitals and doctors offices. The medical individuals in these organizations carried the same prejudice and racial bias as the general public at the time. There was little concern if Black patients understood their legal rights.
08:06 AM - Aug 06, 2023
16/28
When the Tuskegee Experiment *secret* became public knowledge andctge federal government began it's investigations, some US research teams tried to hide their misuse of Black patients by racing to get patients to sign informed consents.
Some researchers re-established their research in Puerto Rico.
Some researchers re-established their research in Puerto Rico.
08:12 AM - Aug 06, 2023
17/28
The US federal govt discovered in the 1990s that African-heritage Puerto Ricans had fallen victim to the EXACT SAME MEDICAL MISTREATMENT as had befallen Black Americans in the Tuskegee debacle. Puerto Ricans weren't being given easy-to-uneerstand informed consent documents by the researchers.
08:16 AM - Aug 06, 2023
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18/28
If you've read this far in my thread, you're probably thinking, "What the HELL? You mean Tuskegee wasn't the end of bad experiments on Black people in America?!".
No, it wasn't.
Some ppl might argue that Puerto Rico is a territory and not really part of the USA.
It doesn't matter. They're human.
No, it wasn't.
Some ppl might argue that Puerto Rico is a territory and not really part of the USA.
It doesn't matter. They're human.
08:23 AM - Aug 06, 2023
19/28
This Puerto Rico situation is well-documented by the US National Institute of Health (NIH). NIH is now the *police force* within the US govt to make sure no hospital, doctor, pharmacist, nurse, or any other medical researcher does anything healthwise to any American without....
An informed consent.
An informed consent.
08:27 AM - Aug 06, 2023
20/28
Which brings me back to the news report about the Black enslaved ironworkers and the struggle to get 41K Ancestry.com users to give their informed consent to let the researchers determine if the folks really are the slaves' descendants.
ACA requires that ANY ENTITY using your DNA...
ACA requires that ANY ENTITY using your DNA...
08:31 AM - Aug 06, 2023
21/28
For a purpose not originally intended or expressly listed in the signed informed consent MUST get a new signed consent from you.
If you have had your DNA samples analyzed, do you remember what your informed consent said about sharing your DNA results?
Probably not.
If you have had your DNA samples analyzed, do you remember what your informed consent said about sharing your DNA results?
Probably not.
08:33 AM - Aug 06, 2023
22/28
The lack of knowing exactly what you're signing when you decide to participate in new medical advances such as DNA testing is a scientific area that is still fraught with patient misunderstanding. Patients want to know more about their bodies and their family histories thru DNA.
So do other ppl.
So do other ppl.
08:37 AM - Aug 06, 2023
23/28
So, please don't get angry when you read news about the slow pace of figuring out who the descendants are of past generations of Black Americans. Don't get mad if today's Americans are slow to give consent to have their DNA and medical information shared. Giving your INFORMED CONSENT takes time.
08:40 AM - Aug 06, 2023
24/28
Now, you know #Spoutible what I know about the relationship of race to informed consents.
Bonus material:
The ACA has a section in its legislation that talks about the requirement for researchers reach out to Americans of ALL races more equally for clinical trials. A key way of doing this is...
Bonus material:
The ACA has a section in its legislation that talks about the requirement for researchers reach out to Americans of ALL races more equally for clinical trials. A key way of doing this is...
08:43 AM - Aug 06, 2023
(Edited)
25/28
By your doctor asking this key question:
"Are you open to participating in a clinical trial?"
If you answer yes then your doctor takes that as your informed consent allowing his office or the hospital affiliate to send you links to the US clinical trials database. Here's the site:
"Are you open to participating in a clinical trial?"
If you answer yes then your doctor takes that as your informed consent allowing his office or the hospital affiliate to send you links to the US clinical trials database. Here's the site:
08:48 AM - Aug 06, 2023
(Edited)
27/28
My apologies on a previous spout. I referenced a doctor as "his' when it could also be a "her" or "their". My mistake. 🙏🏾
08:50 AM - Aug 06, 2023
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28/28
Extra bonus material:
If you were one of the Americans who volunteered to be tested with the COVID-19 mRNA vaccine, THANK YOU!
Your INFORMED CONSENT to participate in this new vaccine technology SAVED MY LIFE.
I can never repay you for what you did for me and the rest of the world.
THANK YOU.
If you were one of the Americans who volunteered to be tested with the COVID-19 mRNA vaccine, THANK YOU!
Your INFORMED CONSENT to participate in this new vaccine technology SAVED MY LIFE.
I can never repay you for what you did for me and the rest of the world.
THANK YOU.
08:54 AM - Aug 06, 2023
In response to Cynthia Williams.
From my personal experience (and I'm Caucasian) the problem with informed concent is that the patient doesn't really thinks/care about it in the case of medical emergency. They'll sign whatever form is placed in front of them if it means getting the proper treatment that will make the pain go away.
08:41 AM - Aug 06, 2023
In response to Thunderschnozzle.
I agree because I've been there. When a.person is hurting or not feeling well all they want is relief. This could be why doctors' office staffs are changing over to people with nurse training. A trained professional will recognize that a patient is racing thru the informed consent and needs help.
09:09 AM - Aug 06, 2023
