Henrietta Lacks, the Tuskegee Experiment, and Ethical Data Collection: Crash Course Statistics #12
HTML-код
- Опубликовано: 7 сен 2024
- Today we’re going to talk about ethical data collection. From the Tuskegee syphilis experiments and Henrietta Lacks’ HeLa cells to the horrifying experiments performed at Nazi concentration camps, many strides have been made from Institutional Review Boards (or IRBs) to the Nuremberg Code to guarantee voluntariness, informed consent, and beneficence in modern statistical gathering. But as we’ll discuss, with the complexities of research in the digital age many new ethical questions arise.
Crash Course is on Patreon! You can support us directly by signing up at / crashcourse
Thanks to the following Patrons for their generous monthly contributions that help keep Crash Course free for everyone forever:
Mark Brouwer, Glenn Elliott, Justin Zingsheim, Jessica Wode, Eric Prestemon, Kathrin Benoit, Tom Trval, Jason Saslow, Nathan Taylor, Divonne Holmes à Court, Brian Thomas Gossett, Khaled El Shalakany, Indika Siriwardena, Robert Kunz, SR Foxley, Sam Ferguson, Yasenia Cruz, Eric Koslow, Caleb Weeks, Tim Curwick, Evren Türkmenoğlu, Alexander Tamas, D.A. Noe, Shawn Arnold, mark austin, Ruth Perez, Malcolm Callis, Ken Penttinen, Advait Shinde, Cody Carpenter, Annamaria Herrera, William McGraw, Bader AlGhamdi, Vaso, Melissa Briski, Joey Quek, Andrei Krishkevich, Rachel Bright, Alex S, Mayumi Maeda, Kathy & Tim Philip, Montather, Jirat, Eric Kitchen, Moritz Schmidt, Ian Dundore, Chris Peters, Sandra Aft, Steve Marshall
--
Want to find Crash Course elsewhere on the internet?
Facebook - / youtubecrashcourse
Twitter - / thecrashcourse
Tumblr - / thecrashcourse
Support Crash Course on Patreon: / crashcourse
CC Kids: / crashcoursekids
Just throwing this out there - the Japanese also conducted human experiments that were every bit as horrific as the Nazis during WWII. It was kept quiet for a long time, so probably didn't contribute to the Nuremberg code at all, but yeah. Unit 731.
Exactly and they never got punished for their crimes , even some of them were hired by the United States to use their findings.
UnashamedlyHentai as if Japan and Germany are the only countries that did this lol
True. The Nazis are so synonymous with evil, when there are quite a few equally or more evil groups.
I read the biography of Henrietta Lacks and was surprised that I hadn't known about her before. I still don't understand why this hasn't been given the attention it deserves before.
glory bee obvious racism.
Why doesn't China talk about Tianenmen Square? Why don't we talk about Wounded Knee? History continues to be told by the winners, but they tend to gloss over the stuff that embarrasses them.
glory bee this definitely gets attention..Henrietta lacks is taught in my ap biology class
Anthony Fantano’s Wife Oh I didn't know they taught about it in class! We had to read the biography in class for the summer (9th-10th grade) and that's the only time I was introduced to this topic. Guess that's one more reason for me to take AP bio.
This story is widely recognized in medical school.
I disagree with your choice of the word "fail" for describing how the doctors "treated" the Tuskeegee victims. It implies that the doctors didn't know what they were doing. A better word would have been "refused."
The doctors actively prevented the patients from seeking treatment too, clearly knew there was a cure, but put their experiment b4 their patients.
It is a kind of moral failure though, especially since medical practitioners have to swear to "do no harm."
Harrison Smith It also exposed their Children and wives.
Sitting on Ceilings no it wasn't the disease was cured they could have easily given them the cure and they even purposely infected people who didn't have the disease
I kind of feel like this episode overlooked mentioning a few important things like what the moral and legal implications were at the time in comparison to today. No mention of Common Rule, WMA, and the GCP guidelines we follow as a result of some of these tragedies where primum non nocere was in question in the first place and yet no mention of extrinsic incentives bias either. Changes in the use of the word participant over subject when describing people who are research volunteers. And no mention of recent changes to data collection requirements by the HHS and GDPR. 😭😭😭
**zucc intensifies**
I absolutely love this episode! I'm writing about ethics in information technology, and that last minute of the video was so on point!
I've taken a handful of statistics courses. This playlist is, hands down, the best.
By far this has been the most easiest video to coast through conceptually, but at the same time also posed the most relevant and difficult questions. Indeed, we are the lawmakers for the digital fortress under construction!
the best serie on youtube. everything is perfect on it
**literally reading “the immortal life of Henrietta Lacks”.. that’s a coincidence
xo.SimplyZ i have a un finished presentation on the genetics of HeLa
I've read it twice.
I loved it when I read it
Read it a few years ago, bout time to pull it out again.
xo.Simp
This is such an important topic, thanks guys.
Because animals cannot consent, we should not be testing on them. I'm glad she mentioned this-- too many discussions of ethics only talk about humans. Animals can suffer, too, and have a right to their own lives, just like you and I do.
The SCP foundation doesn't follow the rules very often when testing on/with D-class personnel.
A very informative, sobering look at ethics, not just in research and technology, but also in social media and business. In addition to key requirements such as voluntariness and beneficence, privacy and informed consent, we whose googol of data are collected every single moment ought to have the opportunity (and the choice) to share in whatever profit is gained from our very data! I wonder how much Facebook, Google, and Amazon will be inclined to exploit our data, if profit sharing with their users were to become an international requirement.
LI'l Sebastian flying on a drone LOL-- I'm dead LOL!! All fun aside, this video was excellent. The crash course episodes have helped me so much in my ethics class!!
Great material for a Medical ethics course!
Everybody reading this needs to read The Immortal Life of Henrietta Lacks by Rebecca Skloot
WHAT I watched the Crash Course Anatomy about this experiment YESTERDAY. First time watching both episodes and also first time I heard about the experiment. Coincidences, man!
What are the chances of that?
This stuff is happening right now.
Maybe Cambridge Analytica could learn a thing or 2 from this video
That is weird. I stumble upon this video after i watched another video about hela cells. Kinda beneficial i must say
Noticed the opening that scrolls just a bit to fast, always have to pause to read the dam labels had Yuma as the sunniest place in the world. Glad to report that it is sunny today after two dreadful days of clouds.
*Cough* Cambridge *Cough* Analytica
lolllll
Very topical
How do you feel about 'post-hoc informed consent' (i.e. first gather the data, then ask permission to use it, delete if not granted)?
There's also the experiments companies paid prisons to do on prisoners in the us, does anybody remember the name of that?
We need Crash Course Mathematics History/Mathematics!
I love this series! It should be called Crash Course Biostatistics, though
Taking cues from CC Media Literacy, I see! I love how CC can find relatable things across series :))
You did a video about ethics, and mentioned Pavlov's dogs, but completely left out that he did those exact same studies on children?
love all about CrashCourse
In the end the good loses in the world. So, we all become subject and victim of idiots. So, the more you tell or the less they know the better.
This is crash course data collection people! But great.
Yes!!! I am so glad there is a video about this it so soooo important!!!
whos writing HFS Alexis Saint-Martin X Dr.Beaumont Fan-Fic ?
The government needs to respect the test subjects worth to the researchers not just their usage and what was with pardoning all the sadistic doctors or evil scientists if they joined up with the winners and shared their findings? We see who taught us our morals and why.
But hank already taught me about hela's cells
Ask yourself, does progress always come at a price? Are some experiments too risky or just wrong? A little curiosity can't hurt anyone Can it?
Ahh, the last case is real now after that Cambridge Analytica thing
great video!
Don't Forget To Be Asking Questions.
What about behavioral or psychological experiments, where the participant knowing what's going to happen would ruin the results?
And usually you still explain afterwards
Free gifts are Trojan Horses.
Differential Privacy for the win.
Make ISP give internet for free until new laws are written, they mine all data alongside all "free" service sites.If all stays the same: Make all "free" service sites and internet providers pay users for data they collect and provide info on what data they collected and how they are using it.
Just covered this in my property law class 😹😹 coincidence
Love it
Great!
Hi i love you guys videos
I think the important thing to remember with data collection is that you, the user, are never personally identifiable. Technically speaking, it's not you that's being sold, it's the behaviours or indicators of a group of users (that you happen to be a part of) that's being sold.
What are the international Marin laws...
Where is episode 11?
good
human experiments. ftw. they are happy to be large of something parter. i say.
we dont even get the gifts. im glad some of the classics, & hand wavey vagueness about the truth of modern human experimentation is covered. we do still want to sleep.
*[laughs in SCP Foundation]*
DO AWAY W/THE DIGITAL NUREMBERG CODE! SERVE YOUR COUNTRY/COMPANY(S)!
Lacks had the first immortalized human cell line. I guess she doesnt want to tell that a black woman had immortal genes
I wonder if Google and Facebook will see this
David, "showing ads. Totally worth it."
we check agree with term and conditions before signing up. it's totally on users fault.
Last one doesn't sound made up😏
Why is there a plant sitting next to her?
Bar chart
Scientific proof that the end justified the means😅
For Europeans, the question of whether we should get informed, voluntary consent has already been resolved. With the new privacy regulation that gets enforced from May, companies that use the personal data of EU citizens without informed, voluntary consent will risk crippling fines. Its still okay to abuse Americans, thought. 😉
The revolution we really need to have is "the right to understand" to put an end to those enormous jargon-filled term of use that everyone accepts without reading.
😴
wait wait you mean to tell me I didn't have to take all those stupid social borderline class discriminatory polls my professor made us take. Like I had a Choice??!?!! boy if I was a citizen and had rights what I'd do
If it makes money, companies will find the way to do it even if it's illegal or unethical. Who's going to stop them? The government? If it tries there will be whines of "Socialism!!!" from business-friendly media companies and politicians? The public won't stop it unless they personally are inconvenienced too much. I'm not sure what could be done to make sure businesses behave ethically period because these days it seems like the least ethical companies are the ones who are the most successful.
The gov't is doing a pretty good job on net neutrality even though it is insanely profitable to overturn it.
If you are scared about the data mining thing, get adblock so that you can stay ignorant about what's going on.
They gave syphilis to 200 in the Program. I guess she missed that
OK. Statistics ??
Is this course about statistics or healthcare testing? I'm confused...
I mean, statistics is used in pretty much all kinds of testing, and ethics is thus an important part of the field.
The ethics of human testing have a direct impact on study design and therefore what type of statistical tests can be applied.
Random assignment of subjects is not always ethical so you have to use less powerful goodness of fit tests.
What do you think is used in healthcare testing?
12 videos in and still no statistics.
I'm waiting for the maths
josh mcgee At this rate, we will never see any math.
It's about statistics as an idea - not an instruction course.
UnashamedlyHentai
If there was a crash course counting, there would be 20 episodes talking about how you can use counting to count stuff, but they would never teach you how to count because it's about the idea of counting, not counting.
Saying that it's completely ok for crash course statistics to not teach statistics is a joke.
it's going be an extremely shallow understanding of statistics if that is the case
50th
Sapphire Two actually 1/10th of that.
Ethics...
We're kidding right?
"To gather and USE this data ethically". Ethical considerations should only relate to the gathering of data (as in the case of all the real cases presented ), not how it is used. It is the difference between talking about facts and talking about what we wish were true. Eg. I find the knowledge of X to be used incorrectly by Y% of the population, lets 'ethically' ban seeking knowledge of X even if the gathering is done ethically. Ppl can be quite loose with Y and 'incorrectly'. Moreover, given it is a consequentialist argument of some harm, and given the degree is unspecified as implied by the undefined Y, then correlations at Z significance or deductive arguments about possibility generally make any argument of the sort true.
I have to disagree there, use is just as important as gather. For instance researchers selling a list of people who have had an abortion to a pro-life hate group would be unethical no matter how ethically that list of people was compiled.
We're talking about the ethics of data COLLECTION (as per the title and content of the video). Im NOT saying that any action taken with the data collected is moral/ethical given that the data was gathered ethically. I AM saying that the ethical considerations of the COLLECTION of the data SHOULD be separated from HOW the data is used. Eg. We can't collect any information on abortion that is used or, moreover (as it logically follows), that could potentially by used (and additionally, do you retroactively censor?), by some pro-life hate group. Not that it would always be the case, but the root concern in your example IS an ethical concern at data COLLECTION as it relates to privacy.
Sorry did you just start off criticizing my point then end up agreeing with it? There isn't a concrete wall separating collection and use because all data is collected with some use in mind hence why ethical approvals consider both and informed consent requires explaining what the data will be used for. For my example clearly if your reason for collecting data is to sell it to third parties (e.g. social media) you shouldn't collect abortion data or try to infer it from any indirect data you may collect. If you want a real example that might be a bit more grey than abortion there was a supermarket chain that inferred from people's shopping habits when their customers were pregnant and then sent them targeted advertising which seems relatively harmless until they "outed" a teenager's pregnancy to her parents.
lol this woman looks so bored
Firstttttttttttttttt
Sonia Ramzan nice.
I don't think it is very ethical let somebody decide the fate of the progress of modern medecine because they don't want to. The Hela cells allowed doctors to save coutless lives and are still doing so today. Letting people know what is involved in a study is all well and good but more often than not the researcher don't even what they are going to discover. It is not like they knew from the begining that Hela cells would be so valuable. Even when we know the value ot theses cells, is it ethical to let them hostages to the will of one person ? There has to be a line where the the good of the many outweight the good of the few. Is it ethical that the Hela cells make money to the persons who contributed nothing to their application and usage (ie: Henrita lack family)?
Informed conscent is only working if the information is somewhat able to be had. Agreement that can be renounced also threaten the people counting on that agreement boundries. Should you be able to go back and attack people for doing something that you agreed beforehand because you now have both acces to new information, is that fair ?
I agree that doctors have a moral duty to explain as well as they can and as clearly as they can what they think is going to be hapening in a study and what their aims are. They also have a duty to keep updating the voloteers to the usage of that data. However, Expecting total and absolute control over ones own data is dangerous too, there has to exist such a thing as common good, something that override the selfish impulse of individuals.