No video :(

Henrietta Lacks, the Tuskegee Experiment, and Ethical Data Collection: Crash Course Statistics #12

Подписаться 16 млн

Просмотров 371 тыс.

50% 1

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

Опубликовано:

26 авг 2024

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист

Посмотреть позже

Комментарии : 136

@dorothy6200 6 лет назад

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.

@TreSwayy 6 лет назад

glory bee obvious racism.

@ryat66 6 лет назад

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.

@sm72184 6 лет назад

glory bee this definitely gets attention..Henrietta lacks is taught in my ap biology class

@dorothy6200 6 лет назад

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.

@joannadinio1313 6 лет назад

This story is widely recognized in medical school.

@UnashamedlyHentai 6 лет назад

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.

@HugoFauzi 6 лет назад

Exactly and they never got punished for their crimes , even some of them were hired by the United States to use their findings.

@4473021 6 лет назад

UnashamedlyHentai as if Japan and Germany are the only countries that did this lol

@nolanwestrich2602 6 лет назад

True. The Nazis are so synonymous with evil, when there are quite a few equally or more evil groups.

@ryat66 6 лет назад

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."

@AEHCPIRPTPS1120 6 лет назад

The doctors actively prevented the patients from seeking treatment too, clearly knew there was a cure, but put their experiment b4 their patients.

@MarshmallowRadiation 6 лет назад

It is a kind of moral failure though, especially since medical practitioners have to swear to "do no harm."

@zOgOs48 6 лет назад

Harrison Smith It also exposed their Children and wives.

@cbgirl1220 6 лет назад

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

@ericarobbin 6 лет назад

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. 😭😭😭

@evangrim7267 6 лет назад

**zucc intensifies**

@Sarah-vi8px 6 лет назад

I absolutely love this episode! I'm writing about ethics in information technology, and that last minute of the video was so on point!

@AnnieCushing 4 года назад

I've taken a handful of statistics courses. This playlist is, hands down, the best.

@zhaniahall693 6 лет назад

**literally reading “the immortal life of Henrietta Lacks”.. that’s a coincidence

@cgarc131 6 лет назад

xo.SimplyZ i have a un finished presentation on the genetics of HeLa

@Anonarchist 6 лет назад

I've read it twice.

@arrynclanaugh416 6 лет назад

I loved it when I read it

@kevinconrad6156 6 лет назад

Read it a few years ago, bout time to pull it out again.

@shawnboire5400 6 лет назад

xo.Simp

@vasishtvemuri4181 4 года назад

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!

@lerownigalerowanisto3014 6 лет назад

the best serie on youtube. everything is perfect on it

@kharyrobertson3579 6 лет назад

This is such an important topic, thanks guys.

@amandawilson4540 5 лет назад

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!!

@DrStephanieYPough Год назад

Great material for a Medical ethics course!

@d.harrison1570 5 лет назад

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.

@DrRonontheInternet 6 лет назад

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.

@torin1006 6 лет назад

The SCP foundation doesn't follow the rules very often when testing on/with D-class personnel.

@Danilego 6 лет назад

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!

@Danilego 6 лет назад

What are the chances of that?

@AxcelleratorT 6 лет назад

Everybody reading this needs to read The Immortal Life of Henrietta Lacks by Rebecca Skloot

@brendaechols2228 4 года назад

This stuff is happening right now.

@sciencepower608 6 лет назад

*Cough* Cambridge *Cough* Analytica

@reemreads4109 6 лет назад

lolllll

@hamzali84 6 лет назад

That is weird. I stumble upon this video after i watched another video about hela cells. Kinda beneficial i must say

@kevinconrad6156 6 лет назад

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.

@DrConrad2122 6 лет назад

Maybe Cambridge Analytica could learn a thing or 2 from this video

@grigorirasputin6055 6 лет назад

Very topical

@piggy8435 6 лет назад

We need Crash Course Mathematics History/Mathematics!

@AsteriosChardalias 6 лет назад

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)?

@naolmstead 6 лет назад

You did a video about ethics, and mentioned Pavlov's dogs, but completely left out that he did those exact same studies on children?

@treesgrowunderwater8070 6 лет назад

Yes!!! I am so glad there is a video about this it so soooo important!!!

@LeoAngora 6 лет назад

I love this series! It should be called Crash Course Biostatistics, though

@zawzawaung8197 5 лет назад

love all about CrashCourse

@ecrivonlunyx 6 лет назад

There's also the experiments companies paid prisons to do on prisoners in the us, does anybody remember the name of that?

@agentrikamcgee 6 лет назад

Taking cues from CC Media Literacy, I see! I love how CC can find relatable things across series :))

@tomscisci7331 6 лет назад

This is crash course data collection people! But great.

@TonytheTaiwaneseTurtle 6 лет назад

Ahh, the last case is real now after that Cambridge Analytica thing

@emmakronberg7102 4 года назад

Free gifts are Trojan Horses.

@1224chrisng 6 лет назад

whos writing HFS Alexis Saint-Martin X Dr.Beaumont Fan-Fic ?

@zombieblood1675 6 лет назад

But hank already taught me about hela's cells

@ZamanSiddiqui 6 лет назад

Don't Forget To Be Asking Questions.

@ItBeHayley 6 лет назад

great video!

@sonRicky1 4 года назад

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.

@ResortDog 6 лет назад

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.

@oldcowbb 6 лет назад

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?

@mihaimaruseac 6 лет назад

Differential Privacy for the win.

@TiffanyS-od3xl 6 лет назад

Just covered this in my property law class 😹😹 coincidence

@ShawnRavenfire 6 лет назад

What about behavioral or psychological experiments, where the participant knowing what's going to happen would ruin the results?

@timeaesnyx 6 лет назад

And usually you still explain afterwards

@SarahHarrisVlogs 6 лет назад

Where is episode 11?

@Baxter_C_C 6 лет назад

Hi i love you guys videos

@fendularatsq2317 6 лет назад

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.

@gestrada9498 5 лет назад

Love it

@JCResDoc94 6 лет назад

human experiments. ftw. they are happy to be large of something parter. i say.

@quinius173 6 лет назад

Great!

@dnyaneshwarjadhav4315 6 лет назад

What are the international Marin laws...

@Pheshen 4 года назад

good

@abunchofiguanaswithinterne2186 5 лет назад

*[laughs in SCP Foundation]*

@JCResDoc94 6 лет назад

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.

@pooperdrop 6 лет назад

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.

@AdonaiZedek 4 года назад

Lacks had the first immortalized human cell line. I guess she doesnt want to tell that a black woman had immortal genes

@davidsweeney111 6 лет назад

I wonder if Google and Facebook will see this

@kalisticmodiani2613 6 лет назад

David, "showing ads. Totally worth it."

@jayanuraga8785 6 лет назад

we check agree with term and conditions before signing up. it's totally on users fault.

@SlopNation 6 лет назад

Last one doesn't sound made up😏

@LePedant 6 лет назад

Why is there a plant sitting next to her?

@beauremus 6 лет назад

Bar chart

@KaihJohnson-Dixon Год назад

😴

@JCResDoc94 6 лет назад

DO AWAY W/THE DIGITAL NUREMBERG CODE! SERVE YOUR COUNTRY/COMPANY(S)!

@tatianarahbany1710 4 года назад

Scientific proof that the end justified the means😅

@JohannesBrodwall 6 лет назад

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. 😉

@agilemind6241 6 лет назад

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.

@robertofontiglia4148 5 лет назад

OK. Statistics ??

@chicchi1682 6 лет назад

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

@AlexVoxel 6 лет назад

Is this course about statistics or healthcare testing? I'm confused...

@Vesarret 6 лет назад

I mean, statistics is used in pretty much all kinds of testing, and ethics is thus an important part of the field.

@Waltham1892 6 лет назад

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.

@calunsagrenejr 6 лет назад

What do you think is used in healthcare testing?

@theterrarian591 6 лет назад

If you are scared about the data mining thing, get adblock so that you can stay ignorant about what's going on.

@Alverant 6 лет назад

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.

@agilemind6241 6 лет назад

The gov't is doing a pretty good job on net neutrality even though it is insanely profitable to overturn it.

@SlipperyTeeth 6 лет назад

12 videos in and still no statistics.

@BlueyMcPhluey 6 лет назад

I'm waiting for the maths

@SlipperyTeeth 6 лет назад

josh mcgee At this rate, we will never see any math.

@UnashamedlyHentai 6 лет назад

It's about statistics as an idea - not an instruction course.

@SlipperyTeeth 6 лет назад

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.

@BlueyMcPhluey 6 лет назад

it's going be an extremely shallow understanding of statistics if that is the case

@AdonaiZedek 4 года назад

They gave syphilis to 200 in the Program. I guess she missed that

@sapphiretwo8631 6 лет назад

50th

@torin1006 6 лет назад

Sapphire Two actually 1/10th of that.

@bdwhitehead 6 лет назад

Ethics... We're kidding right?

@soniaramzan7493 6 лет назад

Firstttttttttttttttt

@torin1006 6 лет назад

Sonia Ramzan nice.

@leojboby 6 лет назад

"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.

@agilemind6241 6 лет назад

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.

@leojboby 6 лет назад

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.

@agilemind6241 6 лет назад

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.

@Tsagan 6 лет назад

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.