History Podcasts

Tuskegee YTB-806 - History

Tuskegee YTB-806 - History

Tuskegee

(YTB-806: dp. 366 (f.); 1. 109'; b. 31'; dr. 14'; s. 12 k.
cpl. 12; cl. Natick)
Tuskegee (YTB-806) was laid down on 25 September

1969 at Sturgeon Bay, Wis., by Peterson Builders, Inc.; launched on 16 April 1970; and delivered to the Navy on 2 October 1970. Placed in service during October, the large harbor tug was attached to the 11th Naval District and was soon in operation out of San Diego, Calif. She provided tug and tow assistance for Fleet units at this port into 1976 when she was shifted to Hawaiian waters for operations out of Pearl Harbor which she has continued into 1978.


Ships similar to or like Tuskegee (YTB-806)

Outdoor Confederate memorial in Tuskegee, Alabama, in the United States. Erected in 1906 by the United Daughters of the Confederacy to commemorate the Confederate soldiers from Macon County, Alabama. Wikipedia

Private, historically black land-grant university in Tuskegee, Alabama. Designated as the Tuskegee Institute National Historic Site by the National Park Service. Wikipedia

United States Navy named for Anoka, Minnesota. Awarded 22 June 1970. Wikipedia

The third ship of the United States Navy to be named for Birmingham, Alabama. Awarded to Newport News Shipbuilding and Dry Dock Company in Newport News, Virginia on 24 January 1972 and her keel was laid down on 26 April 1975. Wikipedia

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NAFTS Guestbook

USS Conserver ARS-39 Reunion
Registration: www.ussconserver.org
Dates: April 28 - May 2, 2021
Location: Wyndham Virginia Beach Oceanfront
5700 Atlantic Ave
Virginia Beach, VA 23451
(757) 428-7025
Location website: www.wyndhamvb.com
Contact: Dale Hower ETCS USN (RET)
Contact email: [email protected]
Contact address: 10407 Santana Street
Santee, CA 92071
Contact phone: (619) 449-4499

Reunion information, registration and hotel reservation information is available at www.ussconserver.org

Dale Hower ETCS USN (RET)
USS Conserver Reunion Committee

Was looking for any comments regarding the USS Samoset ATA-190. Served aboard her from APR57 to SEP59 as an ET2. She was a great ship and a real workhorse. We were in and out from Norfolk as the ATF's rested on their coffee grounds!! Maybe the ATA's were cheaper to operate.

Joseph, NAFTS has 10 other crew members from the Tawakoni on our roles. If you go to the membership page you can do a search by hull # and see who we have.

Not sure I am going to be much help with this but I thought I would relate what little I may know. While I did not serve in the Navy during the time period you are seeking information on, as a former Navy diver, Executive Officer, and Navigator on Fleet Tugs and Salvage Ships, I can tell you that there is a good possibility that the salvage operation could have been done or assisted by either class of ship. The aft boom of the ships were used to hoist many a salvage project and an aircraft could have been placed on its fantail or on a barge towed to the scene. Also likely is that divers from a detachment or the Dive School could have also been dispatched to the scene to augment either ship’s company to perform the task or they could have gone to the scene in a small boat and performed the operation from a barge with the support of a yard crane. In either case, it will be a daunting task to narrow down the full details. I do not know if the diving logs from the Dive School or from any of the ships have been archived. If they have been, then I would start with the Dive School and then for the ARSs and ATFs stationed on the East Coast at the time. If the project was supported by a Naval Ship the Deck Logs would certainly reference the operation.

Hope this helps… you have a tough task ahead finding the information you seek.

Reunion Name: USS Conserver ARS-39
Reunion website: www.ussconserver.org
Dates: April 24-28, 2019
Location: Radisson Hotel
120 South Wildwood Drive
Branson MO 65616
Contact: Kevin Weaver
Contact email: [email protected]
Contact address: 160 Haddon Drive
Macungie, PA 18062
Contact phone number: (610) 780-5484
Details and online registration at http://www.ussconserver.org

Dale Hower, Treasurer
USS Conserver Reunion Committee

Dale and all former USS CONSERVER crewmembers,

I hope you have a great Reunion in Branson and hope advertising it here helps you in reaching a broader audience.

I also want to invite the CONSERVER group to consider joining with NAFTS during our annual Reunions. We always hold open at least one night during our Reunion for individual ship gatherings and set aside tables during our Farewell Banquet so ships can gather together before departing. In 2018 the USS TAKELMA group discontinued holding their own Reunion due to declining attendance and joined with us in Baton Rouge for a great time. You don't have to be a member of NAFTS to attend but I would encourage anyone serving on any of the workhorses of the Navy to consider it as we publish a quarterly magazine and the work is already being done to organize annual Reunions around the country. The 2019 NAFTS Reunion will be from 3-6 September in Green Bay, WI and in 2020 it will be the first week in October in Albuquerque, NM for the Balloon Festival.

All the best and I hope you have a great Reunion.

"PJ" Rolow
NAFTS Treasurer and VP for Reunions

Was part of the USS Hugh Purvis DD 709 that towed the USS Safeguard from the rocks in Vietnam in 1968-1969.
Would like to hear from anyone that was aboard the Safeguard at that towing.

We will be adding your request for information in our April 2019 edition of our magazine. Should we get a response from one or more of our members we will get them in touch with you.

"PJ" Rolow
NAFTS Treasurer and VP for Reunions

We will be including your request for photos into our April edition of our magazine. We will be including your email address so they can contact you directly.

"PJ" Rolow
Treasurer and VP for Reunions

Sorry it has taken so long to respond to your posting.

Should you have any questions, please do not hesitate to contact Chuck Winke and he will be happy to assist you in any way he can. A little information follows about our veteran’s organization.

NAFTS sends out a quarterly magazine titled “Towline.” Membership is open to veterans who served on fleet tugs and salvage ships of the USN, USCG and the USA. Membership is also open non-veterans who have an interest in salvage ships.

Members send in articles about their experiences when they served on fleet tugs and salvage ships. Articles are sometimes humorous, but also frequently contain a serious side of the story, as we were all very young at some point in time.

We have a good time at our annual reunions which are always in the Fall. Reunions are rotated around the United States, so members from the northern, southern, eastern, western and mid-western states have an opportunity to attend close to home if that is more convenient. The 2019 reunion will be in Green Bay, Wisconsin. Numerous tours are available to choose from at all of the reunions. NAFTS home page covers our last several reunions including photos!

Annual dues are $30.00 or we have the 5/4/4 plan where you pay $120.00 and in turn you receive five years membership for the price of four years. Payment can be made by check or PayPal. Checks can be sent to our NAFTS Treasurer, Patrick Rolow, 2375 Wedgefield Rd., Sumter, SC 29154.

We have WWII, Korea and Vietnam era veterans, as well as some who served in the 1980’s as present members.

If you choose to join this great veteran’s organization, please include your complete address, phone number, email, ships served and the years, rank and rate.

Please give our organization a try I don’t think you will be disappointed. Please contact me via email if you are interested or have any questions.


Charles Winke
NAFTS Membership Chairman/[email protected]

We will be adding your request for information in an upcoming edition of our magazine. Should we get a response from one or more of our members we will get them in touch with you.

We will be adding your request for information in an upcoming edition of our magazine. Should we get a response from one or more of our members we will get them in touch with you.

YTM-467 is reported to have been lost March 1944 in Marshall or Gilbert islands. Cause not given combat or noncombat

In early 2016, the former ATF 81 Bannock capsized and sank while under tow to a ship breaker located in Turkey. The ship sank in Greek waters off Cape Tainaron.


40 Years of Human Experimentation in America: The Tuskegee Study

Starting in 1932, 600 African American men from Macon County, Alabama were enlisted to partake in a scientific experiment on syphilis. The “Tuskegee Study of Untreated Syphilis in the Negro Male,” was conducted by the United States Public Health Service (USPHS) and involved blood tests, x-rays, spinal taps and autopsies of the subjects.

The goal was to “observe the natural history of untreated syphilis” in black populations. But the subjects were unaware of this and were simply told they were receiving treatment for bad blood. Actually, they received no treatment at all. Even after penicillin was discovered as a safe and reliable cure for syphilis, the majority of men did not receive it.

To really understand the heinous nature of the Tuskegee Experiment requires some societal context, a lot of history, and a realization of just how many times government agencies were given a chance to stop this human experimentation but didn’t.

In 1865, the ratification of the Thirteenth Amendment of the U.S. Constitution formally ended the enslavement of black Americans. But by the early 20 th century, the cultural and medical landscape of the U.S. was still built upon and inundated with racist concepts. Social Darwinism was rising, predicated on the survival of the fittest, and “scientific racism” (a pseudoscientific practice of using science to reinforce racial biases) was common. Many white people already thought themselves superior to blacks and science and medicine was all too happy to reinforce this hierarchy.

Before the ending of slavery, scientific racism was used to justify the African slave trade. Scientists argued that African men were uniquely fit for enslavement due to their physical strength and simple minds. They argued that slaves possessed primitive nervous systems, so did not experience pain as white people did. Enslaved African Americans in the South were claimed to suffer from mental illness at rates lower than their free Northern counterparts (thereby proving that enslavement was good for them), and slaves who ran away were said to be suffering from their own mental illness known as drapetomania.

During and after the American Civil War, African Americans were argued to be a different species from white Americans, and mixed-race children were presumed prone to many medical issues. Doctors of the time testified that the emancipation of slaves had caused the “mental, moral and physical deterioration of the black population,” observing that “virtually free of disease as slaves, they were now overwhelmed by it.” Many believed that the African Americans were doomed to extinction, and arguments were made about their physiology being unsuited for the colder climates of America (thus they should be returned to Africa).

Scientific and medical authorities of the late 19 th /early 20 th centuries held extremely harmful pseudoscientific ideas specifically about the sex drives and genitals of African Americans. It was widely believed that, while the brains of African Americans were under-evolved, their genitals were over-developed. Black men were seen to have an intrinsic perversion for white women, and all African Americans were seen as inherently immoral, with insatiable sexual appetites.

This all matters because it was with these understandings of race, sexuality and health that researchers undertook the Tuskegee study. They believed, largely due to their fundamentally flawed scientific understandings of race, that black people were extremely prone to sexually transmitted infections (like syphilis). Low birth rates and high miscarriage rates were universally blamed on STIs.

They also believed that all black people, regardless of their education, background, economic or personal situations, could not be convinced to get treatment for syphilis. Thus, the USPHS could justify the Tuskegee study, calling it a “study in nature” rather than an experiment, meant to simply observe the natural progression of syphilis within a community that wouldn’t seek treatment.

The USPHS set their study in Macon County due to estimates that 35% of its population was infected with syphilis. In 1932, the initial patients between the ages of 25 and 60 were recruited under the guise of receiving free medical care for “bad blood,” a colloquial term encompassing anemia, syphilis, fatigue and other conditions. Told that the treatment would last only six months, they received physical examinations, x-rays, spinal taps, and when they died, autopsies.

Researchers faced a lack of participants due to fears that the physical examinations were actually for the purpose of recruiting them to the military. To assuage these fears, doctors began examining women and children as well. Men diagnosed with syphilis who were of the appropriate age were recruited for the study, while others received proper treatments for their syphilis (at the time these were commonly mercury- or arsenic-containing medicines).

In 1933, researchers decided to continue the study long term. They recruited 200+ control patients who did not have syphilis (simply switching them to the syphilis-positive group if at any time they developed it). They also began giving all patients ineffective medicines ( ointments or capsules with too small doses of neoarsphenamine or mercury) to further their belief that they were being treated.

As time progressed, however, patients began to stop attending their appointments. To greater incentivize them to remain a part of the study, the USPHS hired a nurse named Eunice Rivers to drive them to and from their appointments, provide them with hot meals and deliver their medicines, services especially valuable to subjects during the Great Depression. In an effort to ensure the autopsies of their test subjects, the researchers also began covering patient’s funeral expenses.

Multiple times throughout the experiment researchers actively worked to ensure that their subjects did not receive treatment for syphilis. In 1934 they provided doctors in Macon County with lists of their subjects and asked them not to treat them. In 1940 they did the same with the Alabama Health Department. In 1941 many of the men were drafted and had their syphilis uncovered by the entrance medical exam, so the researchers had the men removed from the army, rather than let their syphilis be treated.

It was in these moments that the Tuskegee study’s true nature became clear. Rather than simply observing and documenting the natural progression of syphilis in the community as had been planned, the researchers intervened: first by telling the participants that they were being treated (a lie), and then again by preventing their participants from seeking treatment that could save their lives. Thus, the original basis for the study--that the people of Macon County would likely not seek treatment and thus could be observed as their syphilis progressed--became a self-fulfilling prophecy.

The Henderson Act was passed in 1943, requiring tests and treatments for venereal diseases to be publicly funded, and by 1947, penicillin had become the standard treatment for syphilis, prompting the USPHS to open several Rapid Treatment Centers specifically to treat syphilis with penicillin. All the while they were actively preventing 399 men from receiving the same treatments.

By 1952, however, about 30% of the participants had received penicillin anyway, despite the researchers’ best efforts. Regardless, the USPHS argued that their participants wouldn’t seek penicillin or stick to the prescribed treatment plans. They claimed that their participants, all black men, were too “stoic” to visit a doctor. In truth these men thought they were already being treated, so why would they seek out further treatment?

The researchers’ tune changed again as time went on. In 1965, they argued that it was too late to give the subjects penicillin, as their syphilis had progressed too far for the drug to help. While a convenient justification for their continuation of the study, penicillin is (and was) recommended for all stages of syphilis and could have stopped the disease’s progression in the patients.

In 1947 the Nuremberg code was written, and in 1964 the World Health Organization published their Declaration of Helsinki. Both aimed to protect humans from experimentation, but despite this, the Centers for Disease Control (which had taken over from the USPHS in controlling the study) actively decided to continue the study as late as 1969.

It wasn’t until a whistleblower, Peter Buxtun, leaked information about the study to the New York Times and the paper published it on the front page on November 16 th , 1972, that the Tuskegee study finally ended. By this time only 74 of the test subjects were still alive. 128 patients had died of syphilis or its complications, 40 of their wives had been infected, and 19 of their children had acquired congenital syphilis.

There was mass public outrage, and the National Association for the Advancement of Colored People launched a class action lawsuit against the USPHS. It settled the suit two years later for 10 million dollars and agreed to pay the medical treatments of all surviving participants and infected family members, the last of whom died in 2009.

Largely in response to the Tuskegee study, Congress passed the National Research Act in 1974, and the Office for Human Research Protections was established within the USPHS. Obtaining informed consent from all study participants became required for all research on humans, with this process overseen by Institutional Review Boards (IRBs) within academia and hospitals.

The Tuskegee study has had lasting effects on America. It’s estimated that the life expectancy of black men fell by up to 1.4 years when the study’s details came to light. Many also blame the study for impacting the willingness of black individuals to willingly participate in medical research today.

We know all about evil Nazis who experimented on prisoners. We condemn the scientists in Marvel movies who carry out tests on prisoners of war. But we’d do well to remember that America has also used its own people as lab rats. Yet to this day, no one has been prosecuted for their role in dooming 399 men to syphilis.


The Tuskegee Timeline

In 1932, the USPHS, working with the Tuskegee Institute, began a study to record the natural history of syphilis. It was originally called the &ldquoTuskegee Study of Untreated Syphilis in the Negro Male&rdquo (now referred to as the &ldquoUSPHS Syphilis Study at Tuskegee&rdquo). The study initially involved 600 Black men &ndash 399 with syphilis, 201 who did not have the disease. Participants&rsquo informed consent was not collected. Researchers told the men they were being treated for &ldquobad blood,&rdquo a local term used to describe several ailments, including syphilis, anemia, and fatigue. In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance.

By 1943, penicillin was the treatment of choice for syphilis and becoming widely available, but the participants in the study were not offered treatment.

In 1972, an Associated Press story external icon about the study was published. As a result, the Assistant Secretary for Health and Scientific Affairs appointed an Ad Hoc Advisory Panel to review the study. The advisory panel concluded pdf icon external icon that the study was &ldquoethically unjustified&rdquo that is, the &ldquoresults [were] disproportionately meager compared with known risks to human subjects involved.&rdquo In October 1972, the panel advised stopping the study. A month later, the Assistant Secretary for Health and Scientific Affairs announced the end external icon of the study. In March 1973, the panel also advised the Secretary of the Department of Health, Education, and Welfare (HEW) (now known as the Department of Health and Human Services) to instruct the USPHS to provide all necessary medical care for the survivors of the study. 1 The Tuskegee Health Benefit Program (THBP) was established to provide these services. In 1975, participants&rsquo wives, widows and children were added to the program. In 1995, the program was expanded to include health, as well as medical, benefits. The last study participant died in January 2004. The last widow receiving THBP benefits died in January 2009. Participants&rsquo children (10 at present) continue to receive medical and health benefits.

Later in 1973, a class-action lawsuit was filed on behalf of the study participants and their families, resulting in a $10 million, out-of-court settlement in 1974.

On May 16, 1997, President Bill Clinton issued a formal Presidential Apology external icon for the study.

1 &ldquoHEW News&rdquo Office of the Secretary, March 5, 1973 Memorandum &ldquoUSPHS Study of Untreated Syphilis (the Tuskegee Study Authority to Treat Participants Upon Termination of the Study,&rdquo from Wilmot R Hastings to the secretary, March 5, 1973.

2 Vonderlehr, R.A., Clark, T., Wenger, O.C., Heller, J.R., Untreated Syphilis in the Male Negro, Journal of Venereal Disease Information. 17:260-265, (1936).

The U.S. Public Health Service (USPHS) engages the Tuskegee Institute in Macon, AL in the USPHS Tuskegee Syphilis Study. 2

Penicillin becomes treatment of choice for syphilis, but men in study are not treated.

The study ends external icon , on recommendation of an Ad Hoc Advisory Panel convened by the Assistant Secretary for Health and Scientific Affairs.


یواس‌اس تاسکگی (وای‌تی‌بی-۸۰۶)

یواس‌اس تاسکگی (وای‌تی‌بی-۸۰۶) (به انگلیسی: USS Tuskegee (YTB-806) ) یک کشتی بود که طول آن ۱۰۹ فوت (۳۳ متر) بود. این کشتی در سال ۱۹۷۰ ساخته شد.

یواس‌اس تاسکگی (وای‌تی‌بی-۸۰۶)
پیشینه
مالک
آب‌اندازی: ۲۵ سپتامبر ۱۹۶۹
آغاز کار: ۱۵ آوریل ۱۹۷۰
مشخصات اصلی
وزن: ۲۸۲ long ton (۲۸۷ تن)
درازا: ۱۰۹ فوت (۳۳ متر)
پهنا: ۳۱ فوت (۹٫۴ متر)
آبخور: ۱۴ فوت (۴٫۳ متر)
سرعت: ۱۲ گره (۱۴ مایل بر ساعت؛ ۲۲ کیلومتر بر ساعت)

این یک مقالهٔ خرد کشتی یا قایق است. می‌توانید با گسترش آن به ویکی‌پدیا کمک کنید.


Tuskegee Indians

Tuskegee Connections. The original Tuskegee language is unknown but it was probably affiliated with the Alabama, and hence with the southern branch of Muskhogean.

Tuskegee Location. The later and best known location of this tribe was on the point of land between Coosa and Tallapoosa Rivers, but in 1685 part of them were on the Chattahoochee River near modern Columbus and the rest were on the upper Tennessee near Long Island. (See also Oklahoma and Tennessee)

Tuskegee Villages. None are known under any except the tribal name of Tuskegee.

Tuskegee History. In 1540 De Soto passed through a town called Tasqui 2 days before he entered Coosa. In 1567 Vandera was informed that there were two places in this neighborhood near together called Tasqui and Tasquiqui, both of which probably belonged to the Tuskegee. By the close of the seventeenth century the Tuskegee appear to have divided into two bands one of which Coxe (1705) places on an island in Tennessee River. This band continued to live on or near the Tennessee for a considerable period but in course of time settled among the Cherokee on the south side of Little Tennessee River, just above the mouth of Tellico, in the present Monroe County, Tennessee. Sequoya lived there in his boyhood. Another place which retained this name, and was probably the site of an earlier settlement was on the north bank of Tennessee River, in a bend just below Chattanooga, while there was a Tuskegee Creek on the south bank of Little Tennessee River, north of Robbinsville, in Graham County, N. C. This band or the greater part of it, was probably absorbed by the Cherokee. A second body of Tuskegee moved to the location mentioned above where the Coosa and Tallapoosa Rivers come together. It is possible that they first established themselves among the Creek towns on the Ocmulgee, moved with them to the Chattahoochee in 1715 and finally to the point just indicated, for we have at least two documentary notices of Tuskegee at those points and they appear so situated on a number of maps. It is more likely that these were the Tuskegee who finally settled at the Coosa-Tallapoosa confluence than a third division of the tribe but the fact is not yet established. In 1717 the French fort called Fort Toulouse or the Alabama Fort was built close to this town and therefore it continued in the French interest as long as French rule lasted. After the Creek removal, the Tuskegee formed a town in the southeastern part of the Creek territories in Oklahoma, but at a later date part moved farther to the northwest and established themselves near Beggs.

Tuskegee Population. There are no figures for the Tuskegee division which remained on Tennessee River. The southern band had 10 men according to the estimate of 1750, but this is evidently too low. Later enumerations are 50 men in 1760, 40 in 1761, including those of Coosa Old Town, 25 in 1772 and 1792, 35 in 1799. The census of 1832-33 returned a population of 216 Indians and 25 Negro slaves.

Connection in which they haze become noted. The name Tuskegee became applied locally to several places in eastern Tennessee and western North Carolina, and one in Creek County, Oklahoma, but the most important place to receive it was Tuskeegee or Tuskegee, the county seat of Macon County, Ala. The Tuskegee Normal and Industrial Institute for colored people, located at this place, has, under the guidance of the late Booker T. Washington, made the name better known than any other association.


The Tuskegee Experiment

The Tuskegee Institution was founded in 1881, based in the Alabama it was a part of an effort to expand education for the black community in places that had previously been confederate run. In 1906, the institutions Principal, Booker T Washington, celebrated the schools 25th anniversary praising the institute as a place where students could ‘engage with education and upbuilding of their race.’ Going on to say that the school’s upmost goal would always be,

‘to do something that would reach and improve the situation of the negro population in the south.’

This was the foundation that Tuskegee Institution was built on and yet, less than thirty years later, a team of scientists and doctors at Tuskegee would do the exact opposite. Working with the US government on an experiment that betrayed the very community they were built to serve and in doing so, they committed one of the most heinous acts in American medical history.

But before we get to what went down at Tuskegee in 1932, it’s important to know why it happened in the first place. So, lets quickly chat everyone’s favourite topics – syphilis and its impact on racist medical ideals! (don’t say I don’t spoil you)

A brief breakdown of syphilis

Syphilis is one of those STI’s that seems to have always been a thing. Seriously, it’s been knocking about for centuries, actually getting the name ‘syphilis’ thanks to a 1530 poem by Girolamo Fracastoro, in which a shepherd called Syphilus gets the STI (then called ‘The French Disease’ though the French called it ‘The Italian Disease’ because xenophobia knows no bounds) that’s right syphilis was such a big deal that people wrote poetry about it!

Ok not quite that old, historians can’t quite agree how old it is, but many reckon it first appeared in the late 1400’s. – 1936/1937 syphilis PSA poster, via Library of Congress

Although its presence remains a constant throughout history, throughout the ages we see waves of syphilis outbreaks, one of these waves happened in America, where by the 1930’s it was estimated that at least 1 in 10 people suffered from syphilis. This is obviously very bad, but it’s worse when you factor in that if left untreated, syphilis has some pretty gnarly side effects, including blindness, paralysis, organ failure and something called Neurosyphilis.

Now Neurosyphilis normally develops after many years and it impacts the bodies nervous system, in particular the brain and spinal chord. There are different types of neurosyphilis (don’t worry I won’t go into all of them now!), but one of the major signs of neurosyphilis in a patient is psychiatric problems, such as depression, psychosis, dementia and mania. It’s now estimated that in the 1930’s roughly 20% of America’s asylum inmates were suffering from neurosyphilis. This was a very big problem and so of course, doctors wanted to know more about it.

Cut back to Tuskegee in 1932. The US Government were keen to look at how neurosyphilis impacted the brains of black men. Their hypothesis was that although black men were more likely to have syphillis, they were less likely to get neurosyphilis than white men.

That is quite the racist sentiment to take in, so let’s break it down. On the ‘more likely to have syphilis’ part, this was an idea that had been thrown around since the 1800’s. With many medical professionals taking the approach that black people were genetically inferior to white people and therefore were more likely to succumb to disease. Now this was backed up by figures… but that was actually because a black patient was less likely to receive an early diagnosis, get good treatment or have a quality of life that meant they were physically fit enough to fight off a horrifying disease. This was something a handful of reformers pointed out however, massive racial prejudice was very much the order of the day – so, screw clear social economic factors. This was Darwinism and yet another sign black people were inferior to whites.

But why did they think black men were less likely to have neurosyphilis? Well this is summed up best in 1911 by one Dr E.M Hummell, who suggested that white patients got neurosyphilis as their brains were more developed, but a black person’s brain was less developed, thanks to their ‘childlike euphoria of a carefree life’ which was because:

‘(they) have not progressed very far from the primitive habits of their antecedents in the rude huts of a mid-african village’

Obviously not everyone was just going along with this argument. In 1929 a group of mostly black physicians at Tuskegee Institution (yes that same Tuskegee Institution), underwent a study on black patients with syphilis, and released a series of papers with their findings in the Journal of the Medical Association.

electron micrograph of the bacteria that causes syphilis

However,they chose to omit any mention of a hierarchal race system being a contributing factor. Something that was incredibly admirable (not to mention factually correct), but meant that predominately white physicians could say ‘Gee whizz! This is very interesting…but of course, being black still means you’re more likely to get syphilis but less likely to get neurosyphilis.’

Which was further cemented just a year later by a 1930 paper by one Dr Thomas B. Turner, which used data from 10,000 patients to claim that there was ‘sufficient proof of a profound biological difference in the races and sexes’ And of course, that black men were less likely to get neurosyphilis, because of the now beloved adage, that their brains were not as developed thanks to:

‘the lazy carefree life of a negro in contrast to the strain of civilisation.’

The experiment

And so, with all this in mind in 1932 the US Public Health Service (PHS) launched a study into latent syphilis and neurosyphilis in black men. Where did they go for this study? Tuskegee Institution of course! Not only did the school have a history of studying syphilis, but Macon Country, where the school was based, was seeing a rise of syphilis, making it as senior PHS officer, Dr. Taliaferro Clark, put it ‘an unusual opportunity’.

The plan was this – to study 400 men with syphilis (along with a control group of 200 men who didn’t have syphilis) and just see what happened if they weren’t treated.

The Surgeon General, Hush S Cummings, sold it to Tuskegee Institution by saying, ‘The presence of an unusually high rate in this county and, what is more remarkable, the fact that 99 per cent of this group was entirely without previous treatment. This combination, together with the expected cooperation of your hospital, offers an unparalleled opportunity for carrying on this piece of scientific research which probably cannot be duplicated anywhere else in the world.’ This was an amazing once in a lifetime opportunity to study the effects of syphilis! So of course, Tuskegee Institution jumped on board.

But you may have noticed a small issue here . Remember the bit about just seeing how syphilis impacted the lives of 400 men if left untreated? Well, that goes against everything every medical textbook at the time (and now!) says you should do. If someone has syphilis, you need to treat it. Not leave it for an unspecified amount of time and just see how things plays out.

However the PHS weren’t stressed about this. You see they figured two things:

1. Much of the local community who had syphillis already weren’t being treated, so was it really that ethically bad of them to not treat these men as well?

2. Once a subject was diagnosed with syphilis, they just wouldn’t tell them they had syphilis! After all, they couldn’t ask for treatment for a disease they didn’t know they had.

And so with that monstrosity of a plan in place, the team set to work getting subjects. Things didn’t get off to a good start. Before being admitted onto the programme, potential subjects had to undergo a physical and spinal tap to check that they had syphilis and the signs of neurosyphilis. However, the local black community were worried that these mysterious physicals were actually a crafty way of making young black men have a draft physical and forcing them to join the army.

A subject is tested

So, the team came up with a new pitch, instead of calling it an experiment or programme, they’d sell it as a way for men who had syphilis to get free health care and treatments. This led to an influx of men who either knew they had syphilis (or bad blood as it was locally called) and couldn’t afford to treat it, or thought they had it but couldn’t afford to be properly diagnosed.

The final hurdle in securing all the participants was the spinal tap to check for neurosyphilis. This was an incredibly painful procedure and the team were worried that once subjects told each other how bad it was, nobody would get it. So, they doubled down on the promise of free treatment, writing to the men:

‘Some time ago you were given a thorough examination and since that time we hope you have gotten a great deal of treatment for bad blood. You will now be given your last chance to get a second examination. This examination is a very special one and after it is finished you will be given a special treatment if it is believed you are in a condition to stand it….
REMEMBER THIS IS YOUR LAST CHANCE FOR SPECIAL FREE TREATMENT. BE SURE TO MEET THE NURSE.’

And yes, they did use all caps on that last bit… And no, they were never actually treating these men with anything but placebos.

As the study went on, things kept getting worse. Obviously, the men who had syphilis weren’t getting treatment, but kept getting sick. Yet that wasn’t the major issue (at least for the team). In 1933 the team behind the experiment got more funding to continue the programme. However, by now they’d decided that they’d need to run the programme indefinitely, or at least until the subjects started to die. Because as one of the leaders of the programme Dr Oliver C Wagner put it:

‘We have no further interest in these patients until they die.’

So then why did the Tuskegee Institution carry on working with the Public Health Service, when they knew the end result would be the death of 400 men?

There is no clear-cut reason, but there are potential contributing factors. One would be that Tuskegee Institution was reliant on donations and beneficiaries – so pissing off the US government was a quick way to stop that income coming in. Another was that Dr Eugene Dibble, the head of the school’s hospital, saw the programme as a good way to showcase Tuskegee Institution as a major player in medical research. Then there’s the argument that the school may not have known just how bad the programme was going to get – that these men would never receive treatment and that just a year in, the PHS would be actively waiting for subjects to die.

Dr Eugene Dibble

Many historians argue that Tuskegee Institution, as well as it’s staff, including the likes of Dr Eugene Dibble and Nurse Eunice Rivers, who worked throughout the programme, were as much victims as the men whose trust the Tuskegee experiment abused. Those at the top of the programme were powerful white men and the repercussions for the Institution and staffers like Dibble and Rivers would have been severe.

In fact Eunice Rivers later claimed she only kept working on the programme so she could provide as much care as she could to the men. She said that each year the programme went on those at the top reminded her ‘you belong to us’. Eunice was adamant that she was a good nurse, who had the Nightingale Pledge hanging in her house, and that she was just doing the best she could to tend to her patients in what was a horrifying situation.

Nurse Euinice Rivers

It may be true that Tuskegee staff members like Eunice felt trapped and that they had no choice but to follow orders. But they still didn’t blow the whistle on what was going on. They carried on and we’re very much the face of the study. The men participating weren’t interacting with those at the top. In fact, Eunice admitted that many of the men called it ‘Miss Rivers Study.’

The plan to keep the men on the programme until they could be autopsied went ahead. With the programme’s leadership believing they could gain more from examining the men’s bodies once deceased than they could when they were alive. Which posed the next problem – how did they hide the fact the men were dying and they were planning on autopsying them, from the local black community. It was a tough one, as Dr Oliver Wegner bluntly put it:

‘There is one danger in the latter plan and that is if the coloured population become aware that accepting free hospital care means a post-mortem, every darkey will leave Macon County…’

So, in 1933 the team asked the government to appoint Tuskegee Institution’s, Dr Eugene Dibble, to the PHS. They hoped that seeing a black doctor on the team given a title with such clout would mean the local community would trust them more. They combined this with increasing the work of Eunice Rivers, who now offered car rides to patients on their ‘treatment’ days, gave out hot meals and even told families that in the unlikely case the worst happened, the programme would cover funeral expenses. It was a masterclass in spin putting a trustworthy face on the programme, all in the hopes the families would sign over their loved ones bodies.

And it worked. The patients and their loved ones trusted the team. For so many years these people had no help, no choice but to take their chances on if the disease would ravage them. Not only was the Tuskegee programme offering a lifeline to its patients, but they were helping thousands more mothers, fathers, wives and children, who’d otherwise have to watch their loved ones suffer. So of course, they signed the forms allowing autopsies. Not only because the programme had helped them so much already, but because the men were having treatment, they wouldn’t die. The autopsies wouldn’t happen. That was what they were told.

A doctor takes blood from a Tuskegee suibject, via US National Archives

In 1941, many of the men who were part of the programme were conscripted into the US Army. The army asked these recruits to start taking anti-syphilis drugs. So of course, the Tuskegee programmes panel asked the army to withhold treatment to the 256 new recruits that were also part of the experiment. The army complied.

By the mid 1940’s pencillin had become the go to option to treat syphilis. All medical profiessionals were advised to use the medication – of course, this new medication could have massively helped all the men involved in the experiment… and of course, the PHS and the experiment panel refused to give them it. Instead doling out even more placebos.

This is around the time things started to fall apart. By the 1950’s, these men had spent almost twenty years being told they were getting medical treatment and yet most were getting continually worse. Seeing how penicillin was working on other syphilis patients, some of the men covertly went to get second opinions and were quickly given penicillin.

The Tuskegee experiment team were far from happy about this. After all, they were just starting to see the men die off! In 1950 Dr Wegner eagerly reported:

“We now know, where we could only surmise before, that we have contributed to their ailments and shortened their lives.”

Dr Oliver C Wengle

By 1955 30% of deceased subjects who were autopsied had been found to have died due to neurosyphilis or due to syphilis contributing to cardiovascular lesions and other issues. Of the subjects that were still alive, the team felt confident that the majority were likely to die of syphilis directly or syphilis related conditions. But that couldn’t happen if all the subjects kept secretly running off to other doctors and getting penicillin.

So, they did the unthinkable. They contacted physicians around Macon County and told them the names of men they were to not offer syphilis treatment too. They then double downed and visited black doctors and told them to do the same.

This meant that the Tuskegee experiment managed to run for forty years.

In 1972 the experiment was ended. Whistleblowers had finally stood up. By the time the study shut up shop, it is believed 28 men had died of syphillis, 100 more of related complications and multiple partners of the men had unknowingly contracted syphilis, which in turn resulted in at least 19 children being born with the diesease at birth.

What at first started as rumbling in the press, went nuclear when the Associated Press ran a report on the experiment. A panel, piffly dubbed the Tuskegee Syphilis Study Ad Hoc Advisory Panel, was quickly formed in August that year. In 1973 they released a report that stated that it was wrong for the experiment to have denied subjects penicillin treatment but that although the men did not give informed consent for what happened to them, they did volunteer to be part of the experiment. Despite the clear evidence that the men hadn’t known this was an experiment – they thought they were signing up for free treatment, not potentially signing their own death warrants.

In 1972 survivors sued in a class action lawsuit and were awarded $9 million dollars which was to be split to them and 6000 descendants of all the 600 subjects (in 2017 some descedants were still calling for the remains of the this money, so they could build a memorial garden and pay for college fee’s)

Ernest Hendon, the last survivor of the study

It wasn’t until 1997, twenty five years after the study ended that President Bill Clinton offered a formal apology on behalf on the US government, to the studies subjects. The apology was watched via a live feed by all six of the surviving subjects.

And that was that, the end of the Tuskegee experiment.

We may never know exactly how many men died as a result of being denied treatment during the Tuskegee experiment. Nor how many people outside the subject pool were infected.

The last surviving subject of the Tuskegee experiment, Ernest Hendon, who was part of the control group, died aged 96 in January 2004. But the troubled legacy of Tuskegee didn’t end with him. A 2016 research paper shows that The Tuskegee experiment led to mass mistrust of medical professionals and the Public Health Service. This in turn is estimated to have lowered the life expectancy of black American men by up to 1.5 years, in the immediate years following the exposure of the experiment.

Though the shadow cast by the Tuskegee experiment is growing fainter each year, it lives on. In the life expectancy rate for black men. In the lasting mistrust of a failed system that refused to do anything until it was far to late. And in the families who are still living with the devastation and everyday ramifications that came from those that promised to care for them.

This was interesting, where can I find out more?

There are some AMAZING resources on this. I got a lot of information on the below (all able to access online for free btw)


Tuskegee: How one Alabama town helped shape history

The Varner-Alexander House, on Montgomery Street in Tuskegee was one of the finest mansions of Alabama’s Piedmont section. It was built in 1840 by William Varner, a pioneer settler of Macon County. It is reported that Varner himself designed and supervised construction of the mansion.

The Varner-Alexander House, on Montgomery Street in Tuskegee was one of the finest mansions of Alabama’s Piedmont section. It was built in 1840 by William Varner, a pioneer settler of Macon County. It is reported that Varner himself designed and supervised construction of the mansion. (Provided photo)

Few towns had as much of an impact on modern African-American history as Tuskegee, Alabama.

We are highlighting the city of Tuskegee, Alabama, as our newest feature in the Good Towns series. Spotlighting special towns across the country, Good Towns is about the character, the history, the people and the unique things that make a town a special place. We hope you enjoy this story about Tuskegee, a fitting focus for Black History Month.

Despite a population of just under 10,000, few towns in the South have had as much of an impact on African-American history, especially in the last century. A Tuskegee native, Rosa Parks, brought the struggle of the Civil Rights movement to a national audience when she refused to give up her seat on a Montgomery bus. At the height of the movement, Tuskegee was part of a landmark voting rights case, Gomillion v. Lightfoot, which found the gerrymandering of districts to limit the black vote to be an unconstitutional practice.

Yet Tuskegee’s history goes much further. Spanish explorer Hernando de Soto’s expedition took him through the area in the 15th Century. Native Americans lived there first and remained until settlers arrived in the early 19th Century.

Located 40 miles east of Alabama’s capital city, Montgomery, and a short commute from Auburn University, Tuskegee retains the charm of small-town America. Yet the people, the town and historic Tuskegee University have produced resonate throughout the nation – if not the world.

Booker T. Washington founded the university and George Washington Carver earned international acclaim for innovative agricultural farm science. Authors Ralph Ellison and Zora Neale Hurston shed light on the African-American experience and brought new respect for American literature. Radio personality Tom Joyner and actor Keenen Ivory Wayans came of age at Tuskegee University. Good Morning America’s Robin Roberts was born there.

The Tuskegee Airmen trained in Tuskegee and changed the perception of courage and valor during World War II. And a small band that originated at then-Tuskegee Institute emerged as one of Detroit-based Motown’s greatest rhythm and blues acts of the 20th Century. That band? The Commodores.

“This is a great historical town with a tremendous spirit,” said Mayor Tony Haygood, our tour guide for a day in Tuskegee. “What developed here in terms of education, science and medicine, music and civil rights – so much has come out of this town that has an impact on the world.”

A Real Brickhouse

In 1968, a group of freshmen at Tuskegee Institute began jamming together, creating a fusion of funk and soul that would eventually top the charts. Four years later, The Commodores were signed by Motown Records and gaining fame as the opening act for the Jackson 5. About that regal name. It was taken at random, thanks to a dictionary that opened to the perfect place when the band was stuck for ideas.

Nearly a half-century later, the group’s history is honored in an old brick building on East Martin Luther King Jr. Highway called, simply, the Commodore Museum. Open to the public during business hours Tuesday through Saturday, the museum features the band’s original stage uniforms and instruments, memorabilia and vinyl records of hit albums that produced the likes of Brickhouse, Too Hot to Trot, Three Times a Lady and Easy.

The real treasures are in the back wing, which includes a stage for rehearsal and debuts of new material, a recording studio and “The Pit,” where band members cut business deals and brainstormed tour ideas and new material.

For Johnny Bailey, the band’s former bodyguard, preserving the group’s creative refuge is a work of love. “I was just a country boy, but they trusted me to take them all over the world,” Bailey said. “Now I want to share these memories with everyone.”

Formerly, the headquarters of a construction company, owned by the current mayor’s family, and an annex of a local community college, The Commodores acquired the building after initial success at Motown. The reason, Bailey said, was practical. “Motown was so expensive. They could come here and create, do all the work, and then go back to Motown and mix it and lay it down in wax.”

Out front, a VCR plays Commodores videos from the band’s heyday, from televised appearances and concerts. Oddly enough, there’s also a video of a network special featuring country/rock crooner Kenny Rogers singing a song penned by founding member Lionel Richie, Lady. The song was a huge hit for Rogers, of course, and the Rogers’ special, with The Commodores, was filmed on the back stage of the Commodore Museum.

A Tuskegee native who left the group in 1982 to pursue a career as a solo star, Richie still owns a home near the college campus. His first visit back to the museum left him reflective.

“Lionel was like a kid again, seeing all these memories come alive,” Bailey said. “It was a fun visit, and an emotional day for both of us.”

“Town Square is one of our treasures, and we want to make it the center of everything in Tuskegee,” Mayor Tony Haygood said. (Provided photo)

The Center of it All

At the heart of a walkable downtown, local businesses surround a grass- and tree-lined park. An old statue commemorating the role of home-grown troops during the Civil War sits in the middle. It’s the spot to sit a spell, but the city has plans to make it even better. College students from Auburn and Tuskegee are working on a landscaping plan to enhance the square for decades to come.

Businesses range from a computer repair shop to a fashion boutique to a restaurant and a local music venue. The former movie theater houses a bank branch.

“Town Square is one of our treasures, and we want to make it the center of everything in Tuskegee,” Haygood said. The city just held its first Movie Night on The Square and plans to expand the event throughout the spring and summer.

One of a handful of local buildings on the National Register of Historic Places, the Judge Aubrey Ford Jr. Justice Center is built of sand-colored brick across from the square. Formerly the Macon County Courthouse, the justice center bustles with activity. The most notable additions are the large clock in the bell tower and the gargoyles that were part of the original phase of construction in the 19th century. These gargoyles may look menacing, but they’re considered good luck. They also serve another, more practical purpose: To direct rainwater away from the heart of the building during a storm.

For Johnny Bailey, The Commodores former bodyguard, preserving the group’s creative refuge in Tuskegee is a work of love. (Provided photo)

History Preserved

A short walk from Town Square leads to the Tuskegee History Center, formerly the Tuskegee Human and Civil Rights Multicultural Center. Located on South Elm Street, the museum provides an interactive timeline from Tuskegee’s history, one that began long before man. It traces Tuskegee’s rich Native American history, the town’s founding, and early development.

Still, the centerpiece is Tuskegee’s role in the Civil Rights movement. One of the more infamous stories is told through the Tuskegee Syphilis Study Memorial, which reminds visitors of one of America’s darkest chapters. For 40 years, beginning at the height of the Depression and continuing through 1972, the government study followed the progression of untreated syphilis in rural African-Americans. Patients were provided free medical care and burials for participating, but most never knew they weren’t being treated for the disease.

Other displays recount the town and Macon County’s role in the movement, including the first African-American deputy hired in the state of Alabama in the 1950s, when Sheriff Preston Hornsby hired James Charity. A decade later, history was made again when Lucius Amerson became the first elected black sheriff in the state of Alabama since Reconstruction.

The gift shop features “Macon Makers,” which focuses on locally produced art, books, quilts, jewelry, music and food, including preserves and jams. Rick Mosley’s “Legends of the Game” is a Monopoly-styled board game that focuses on history, including professional baseball’s Negro Leagues.

Outside the museum is a small building that captivates school children. A replica of Booker T. Washington’s pre-Civil War childhood home is life-size and based on descriptions from the educator’s autobiography. It features log walls, a fireplace, a packed-earth floor, a loft, potato cellar and a wooden-shake roof.

Lifting the Veil

Washington, born into slavery and freed before his 10th birthday, established the Negro Normal School in Tuskegee in 1881. Within a few years, with appropriations from the state legislature, the school moved to an abandoned, 100-acre plantation on the edge of Tuskegee. Today, Tuskegee University is a world renowned institution of higher learning.

A monument of Washington is the focus of the center of the sprawling campus, which now has an enrollment of close to 5,000 students. The monument reads: “He lifted the veil of ignorance from his people and pointed the way to progress through education and industry.” Nearby is the Tuskegee University Chapel, the spiritual and social center of the school which has hosted U.S. Presidents and icons including Dr. Martin Luther King Jr. It’s now the home of the famed Tuskegee University Golden Voices concert choir. The current chapel was completed in 1969. Designed by architects Paul Rudolph of New York and Tuskegee faculty members John A. Welch and Louis Fry, it replaced the original chapel, destroyed by fire in 1957.

Across the street from the Lifting the Veil monument is the Kellogg Conference Center. A full-service hotel with more than 100 guest rooms and suites, this Georgian building is one of 11 Kellogg Centers at academic institutions in the U.S. and Europe. It includes multimedia meeting rooms, an expansive ballroom with a capacity of 385 guests and a 287-seat auditorium. It’s also a great place to stop for a meal. Dorothy’s Restaurant serves traditional Southern fare in a relaxed atmosphere from 8 a.m. to 10 p.m.

At the entrance of the campus sits a gorgeous antebellum mansion. Grey Columns was designed and built under the supervision of its first owner, Harvard-educated William Varner, in 1840. It remained in the Varner family until 1974, when the National Park Service acquired it as part of the Tuskegee Institute National Site. Today, nearly two centuries after it was constructed, Grey Columns remains in pristine shape and serves as the home of the Tuskegee University president. It features Doric columns, a three-sided veranda and a cupola and a tree-covered lawn. Yes, its breathtaking.

Flying into History

They are now a part of film history, their story told and retold on screen. At the start of World War II, however, the young enlistees of the U.S. Army Air Force were like nothing seen before. More commonly known as the Tuskegee Airmen, the first African-American aviators in the nation’s military history reported to Moton Field, just outside Tuskegee, to begin training.

The bombardment group trained with North American B-25 Mitchell bombers. The 99th Fighter Squadron trained for aerial combat, and were the first to deploy overseas – North Africa in 1943 and, later, to Europe. Another fighter group flew bomber escort missions. But the plane that became the one associated with the Tuskegee Airmen was the P-51 Mustang, with tails painted red that distinguished the Alabama-based outfit from others.

What began as a military “experiment,” to see if black pilots could be trained to fly combat aircraft, is now honored at the Tuskegee Airmen National Historic Site. Run by the National Park Service, a hangar at Moton Field turned into a museum and classroom space provides an interactive history lesson, detailing the Tuskegee Experience, wartime exploits and the discrimination the men faced throughout the war. This living history exhibit also highlights the women who worked as mechanics, control tower operators and administrators.

Tuskegee Institute also played a role, providing a primary flight school and use of existing facilities and instructors. Tuskegee was chosen as a site because of the proximity to the university as well as a welcoming racial climate. Even in the 1940s, Tuskegee had one of the South’s highest concentration of citizens, especially African-American, with college educations.

A can’t-miss exhibit are two of the original training planes. A two-toned biplane provided basic training, but seemed outdated by the time the pilots advanced to live missions and the high-tech P-51 Mustang.

Blast from the Past, Energy for a New Generation

In some ways, a trip to Tuskegee is a trip into the past. People still greet you with a wave and a handshake. Buildings look much as they did decades ago. With a deep history, it maintains a welcoming embrace for people coming home and those just passing through.

“I tell people all the time, ‘come to Tuskegee and live for two years, and you’ll always come back home,’” Haygood said. “Tuskegee has an energy that won’t let go.”


Discussion

This study used qualitative methods to explore barriers to participation in research among African American adults who reside in a mid-size urban city. Mistrust was the primary concern voiced by study participants. Literature that describes and explores the role of mistrust among African Americans dates back to the early 1970s, just after the Tuskegee syphilis study became public and uses both quantitative 17,24,25,29,42,48 and qualitative 17,22,26,27 approaches to describe mistrust and understand its relationship to research participation. Our data support existing literature and deepen the understanding of how multifaceted this mistrust is, how it influences many parts of people’s lives, and how it creates a significant emotional burden. Indeed, our data remind us that ongoing experiences with the health care system perpetuate feelings of mistrust. This continues to reduce our ability to recruit African Americans into research studies and limiting the generalizability of current research findings.

Of particular interest is that the data indicate that barriers are common across multiple subgroups including those who had and had not previously participated in research studies, suggesting that merely participating in research is not enough to lessen mistrust. We intentionally created groups that consisted of individuals who had participated in research (from one of our centers), as there is some work that suggests that prior research participation increases the likelihood of participation. 51, 52 Additionally, researchers in the study centers had developed multiple strategies to improve low participation among minorities The primary strategies in both cancer and Alzheimer’s disease were to develop long-term partnerships and improve access to quality care. The specific activities included (1) creating community advisory boards (2) delivering culturally targeted education programs (3) partnering with community-based organizations serving the African American community and (4) improving access to clinical care and support services. These findings suggest that previous participation in low risk research, such as survey or focus group studies, will not in and of itself increase participation in more invasive and higher risk studies.

Participants emphasized that historical events such as the Tuskegee syphilis study remain in the minds of many African Americans and often attributed mistrust to this history. History was discussed in every group and across socioeconomic statuses. Many described their beliefs that the federal government, responsible for the Tuskegee study, both injected syphilis into and withheld treatment from study participants beliefs learned from parents and grandparents. Even the more educated participants relate to this history and, although they recognize that Tuskegee participants were not injected, expressed continuing mistrust related to these past events. In fact, the emotional side of mistrust was particularly evident in groups constituted of higher-educated participants. This may reflect the fact that better-educated individuals have greater access to information, in general, and can therefore learn about specific events in more detail. This finding is illuminating because the research is mixed regarding the impact of education on mistrust 60� , and we could identify no other studies that clearly demonstrate that mistrust is similar across socioeconomic groups.

Although historical events such as Tuskegee foster mistrust, participants stressed that disrespect and discrimination towards African Americans continues to occur. Recent literature supports the view that current occasions of perceived or real racism or discrimination exacerbate mistrust. 63 The Institute of Medicine report on disparities of treatment by race suggests that much disparate care is due to discrimination, both conscious and unconscious. 36 VanRyn and colleagues describe the complex process of decision making that medical providers go through and suggest that perhaps false beliefs about individuals may result in disparate treatment. 64 Some studies, however, argue that participation in research increases discrimination by allowing investigators to highlight problems in the community (i.e., to emphasize negative traits of Black individuals and their communities). In fact, Nicholson and colleagues found that African Americans respond negatively to cancer disparity information and positively to messages of hope. 65

Perhaps the most disturbing instance of mistrust that participants described is the belief that information about research studies and their participation is withheld by researchers, which may be one factor that perpetuates feelings of mistrust. In particular, focus group participants indicated they are provided limited or inadequate information about their participation in research. Indeed, this may be one of the most enduring negative fallouts from the Tuskegee syphilis study and other unethical studies. However, these beliefs cannot just be attributed to historic events. For example, a recent study reported that over 50% of physicians prescribe placebos without thoroughly informing patients, suggesting that these beliefs may have merit. 66 As researchers continue to behave in a way that exacerbates mistrust, so will the fear about research among the African American community continue. In turn, there will continue to be low participation rates, resulting in studies that can only be generalized to the White majority. The resulting inability truly to understand the biological and social determinants of disease etiology and progression among minority populations will only deepen the existing disparities in health.

This study has limitations. Qualitative data are descriptive and are not meant to generalize to any broader population. Our goal in this study was to gain in-depth understanding about research participation from individuals who could speak from life experiences about the issue, therefore creating productive conversation. 53 Our data suggest the importance of working with and in the community as a way to understand perceptions specific to a particular community.

As is appropriate with focus group methodology, we developed and used a purposive sampling strategy. 53 We segmented groups by previous research participation, gender, and socioeconomic status. Our findings did not identify differences by segments, suggesting that previous research experience and/or higher socioeconomic status were not enough to change deep-seated beliefs. We were able to recruit a large number of groups, which allowed us to reach saturation (or, repetition) of themes. 55

Although researchers are adept at providing incentives and recruiting from community venues to enhance African Americans participation in studies, it is important to understand that these efforts are not enough to facilitate recruitment into many more involved clinical studies or trials. It is imperative that we understand and act specifically upon mistrust that this and other studies have reported. Several reports outline ways in which researchers and health care providers can gain the trust of community members. 4,18,24,67� For example, community-based participatory research (CBPR) models claim to improve community-research relationships 70� although they are still not widely used. 73 CBPR is a collaborative approach to research that equitably involves all partners in the research process, recognizing the unique strengths that each brings. 72 It stipulates that long term relationships develop and that knowledge is gained by both parties, which is used to improve health. 70, 74 Cook recently conducted a review of CBPR projects that addressed health disparities. 75 In two-thirds of the studies, CBPR led to community actions to improve health. Studies that used qualitative methods were more acceptable to the community. In fact, community partners felt that the randomized controlled trials were too complex and were concerned that they withheld valuable interventions from the control group.

Principles of CBPR have been used by investigators to increase African American participation. One tool that has been used successfully is a community advisor board (CAB), which provides a window into the context in which many participants live, helps define the consent process, and creates relationships. 74 Several large research centers (Harvard, University of Pittsburg, Mayo Clinic) have created Community Research Advisory Boards (CRABs) to provide review and advice to investigators initiating more invasive studies and clinical trials. These boards review the project design and procedures to identify and address modifiable community-specific barriers to participation. Additionally, community boards and other groups promote regular, honest, and thorough dissemination of information about the research process. Studies also suggest that short and long-term outcomes must be communicated back to the community in order to gain and maintain trust. 25,76 Participants in our study confirmed this desire. Finally, it is strongly recommended that potential participants be given adequate time to make decisions about research participation. 25

Other ways to increase African American participants in research should also be considered. For example, in both this project and much of our other work, community members express the desire for researchers to have a presence in the community. Participants indicate that small group information sessions, co-led by researchers and community members, would be welcome. In some of our other work, we employ community members to help us carry out the research. Finally, as recommended by the Institute of Medicine and the Dept. of Health and Human Services, we must be diligent about encouraging African American (and other minority) students to continue their education to become scientists, thus increasing the proportion of underrepresented minorities in research positions. 36,77

In the early 1970s, the National Heart, Lung and Blood Institute established a program designed to increase minority participation. The most important strategy suggested by the report was soliciting contributions from community opinion leaders. 78 Why are researchers not implementing some of these strategies? Perhaps they have difficulty seeing the applicability of CBPR principles to clinical trials, as it has traditionally been used in public health and prevention studies. It is reasonable, however, to believe that researchers who conduct clinical trials can incorporate some of the CBPR assumptions and principles into their work. For example, researchers can attempt to understand the community and its “local theories,” or beliefs about determinants and solutions to problems. 79 Communication of study findings has also been shown to positively influence attitudes about participation and willingness to consider participation in future trials, even when the results are negative or inconclusive. 80 Participants in our study emphasized that when study findings are communicated back to the community, they should be presented in an understandable way, and also from a sense of interest and concern about the community. Teal and colleagues describe a framework for culturally competent communication, which includes communication repertoire, situational awareness, adaptability, and knowledge about core cultural issues. 81 Researchers should indicate how studies can potentially benefit the African American community. To close the loop, investigators can work to ensure that minority communities reap benefits from new research findings.

Investigators will continue to be limited in their ability to recruit study participants until they (the investigators) understand the depth of mistrust among many African Americans and its impact on access to health care, medical treatment, and research participation. Perhaps researchers are not as culturally competent as is necessary and continue to make decisions unconsciously based on race. 36 Our study suggests that the racism that was a community norm during the time Tuskegee syphilis study 82 persists, a position validated by the report issued by the Institute of Medicine. 36 This study reminds us that mistrust among African Americans, regardless of prior participation or socioeconomic status, continues and illuminates its multifaceted nature. Because of the recent and continued acknowledgement of health disparities that exist in African Americans, it is incumbent upon us to continue to explore and report the continuation of mistrust among African Americans related to research participation and to develop new and use existing strategies to enhance the trustworthiness of researchers and health care institutions. This study is a reminder about the significance of mistrust on research participation. It helps assure that investigators consider all of the issues related to mistrust as they embark upon studies, including informing community members about the potential impact of study findings on health disparities as part of outreach and recruitment. Unless researchers and practitioners acknowledge their roles in the development and continuation of disparities and create mechanisms to reduce mistrust, health disparities and limited research participation will continue.


Watch the video: Life Is Fake! - AskReddit (January 2022).