major milestones in the history of ethical issues in research

50 Years After the Tuskegee Revelations: Why Does the Mistrust Linger? James H. Jones, PhD, and Susan M. Reverby, PhD

ABOUT THE AUTHORS

James H. Jones is an independent historian who taught at the University of Arkansas, in Fayetteville, and University of Houston, Houston, TX. Susan M. Reverby is McLean Professor Emerita in the History of Ideas and Professor Emerita in Women’s and Gender Studies, Wellesley College, Wellesley, MA.

The COVID-19 pandemic proved

that mistrust of the government’s

public health efforts stems not only

from manipulated political anger

toward federal policies but also from

personal and collective memories

of medical and public health

experiences.1

Fifty years ago this past July, media

outlets across the country reported

that between 1932 and 1972 the US

Public Health Service had been con-

ducting an experiment in and around

Tuskegee, Alabama, to study, but not

treat, hundreds of African American

men who had the noncontagious stage

of latent syphilis.2 Throughout its 40-

year history, the government doctors

lied to the men, telling them over and

over again they were being treated for

an unspecified sickness called “bad

blood” that might or might not be syph-

ilis. Many of the men had their lives

shortened, and scores died from not

being treated. Although they were sup-

posed to be at the noncontagious

stage, many passed the dangerous dis-

ease on to their sexual partners, wives,

and children.3 After 1972, “Tuskegee”

entered our public health and medical

vocabulary as a metaphor for racism in

medical research and public health

practices.

After the Tuskegee Study was dis-

closed to the broader public, the efforts

to acknowledge it and provide repara-

tions began.4 The case demanded litiga-

tion. Fred Gray, the iconic Alabama civil

rights lawyer who represented Rosa

Parks and Martin Luther King during the

Montgomery bus boycott, filed and set-

tled a lawsuit that gave modest sums to

the surviving subjects, controls, and the

families of the deceased. In addition,

the Center for Disease Control (later

renamed Centers for Disease Control

and Prevention) provided medical care,

then health care, for any issues to the

remaining men and any of their wives

and children who had contracted syphi-

lis. A badly flawed federal report fol-

lowed, evaluating some of the research

malpractice embedded in the Tuskegee

Study. Several years later, knowledge of

the Tuskegee Study was instrumental in

pushing the government to establish

guidelines that require the principles of

justice, beneficence, and respect for

persons in federally funded human par-

ticipants’ research.

THE LEGACY BEGINS

These measures were too modest and

too few to prevent the Tuskegee Study’s

ongoing damage to African Americans

because it followed on so many other

experiences.5 When a medical proce-

dure harms or kills an individual patient,

a malpractice lawsuit may provide finan-

cial compensation to the victim and

their family. Often, only the family and

the doctor or hospital know about it.

When a study that injures or kills scores

of its subjects is conducted by a govern-

ment agency, however, the damage

extends far beyond the immediate vic-

tims. An entire populace or group can

have their trust in government shat-

tered and collective memories, both

false and true, become the truths that

shape their response to offers of posi-

tive health interventions when new

health crises arise.6

The rumors about what happened in

Tuskegee began as soon as the news

broke 50 years ago, especially the false

belief that the men were actually

infected by the government doctors,

rather than had the disease already.

This belief is reinforced time and again

whenever a photo taken by the Public

Health Service in the 1950s that shows

a White doctor doing a blood draw with

a syringe on a Black man’s arm is

viewed. If you do not look closely, it

looks as if an injection is being adminis-

tered. Then, when the AIDS epidemic

erupted and spread in the early 1980s,

researchers found that memories of

the Tuskegee Study vitiated the trust

many African Americans had in offers

of health care.7 Many African Ameri-

cans, including educated professionals,

believed that HIV was a manmade dis-

ease created in laboratories for the

explicit purpose of perpetrating geno-

cide on Black people.8

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After these rumors circulated, espe-

cially that the study ’s men had been

given the disease by the government,

“Tuskegee” provided a partial answer to

why this theory about HIV had traction.

Yet, many in Black communities who

were disposed to believe the worst of

their government had a much deeper

vision of the past linked to their day-to-

day lives. Their perspective reached

back to their ancestors who were cap-

tured by slave traders in Africa; to the

horrors of the “middle passage”; to

those trapped for centuries in the

nightmare of slavery; to the dashed

hopes of “40 acres and a mule” after

the Civil War; to the economic impover-

ishment created by sharecropping, the

crop lien system, and convict labor; to

Jim Crow laws, lynch laws, and the erec-

tion of legal barriers that restricted

African Americans’ right to vote for the

better part of a century; to knowledge

of other medical horror stories; and to

the drug wars that fueled mass incar-

ceration. Then there is, of course, most

importantly, the mistreatment in indi-

vidual recent medical encounters that

layered on the collective past.

In the 1990s, as the 20th anniversary

of the Tuskegee Study rolled around,

documentary film makers provided a

visual memory. The federal doctors

who were involved and still alive

expressed little to no remorse in their

filmed interviews. Angered by this

response, a group of historians and

health providers, aided by the Black

Congressional Caucus, successfully lob-

bied President William J. Clinton to offer

a formal federal apology in 1997 to the

last six surviving subjects, their families,

and the entire African American com-

munity.9 That was an important ges-

ture, but it could not end the mistrust.

It was only one step toward truth and

reconciliation. It merely acknowledged

the past. It did not change the present

nor shape the future.

COVID-19 AND RENEWED MISTRUST

When the COVID-19 pandemic hit

23 years later, the Tuskegee Study

seemingly once again complicated the

government-sponsored vaccine rollout

in many African American communi-

ties.10 Working to overcomemisinforma-

tion, suspicions, and mistrust, frontline

physicians and other health providers

offered reassurances that the vaccine

was safe and effective. Indeed, the lead-

ers of the Voices for Our Fathers Legacy

Foundation, the organization that repre-

sents the descendants of the men in the

Tuskegee Study, made a public service

announcement to explain why they

were taking the vaccine and why others

should as well.11 Despite these efforts,

many doubters in Black communities

remained unpersuaded, prompting

some journalists to opine that African

Americans were trapped in the past,

unable to escape raw memories of the

rancid racism that had blighted Black

lives throughout US history.12

Yet the problem was not limited to

abuses in the distant past. For many

African Americans, the absence of trust

in the government’s medical policies

and directives flowed from their every-

day lives and was tied to the here and

the now. Significantly younger mortality

rates for both Black men and women

compared to Whites, cancers diag-

nosed later and treated less aggres-

sively, disturbingly higher maternal and

infant mortality rates, complaints of

pain routinely discounted—the list

goes on and on, and the disparities

have gotten worse.13 Nor are the prob-

lems limited to diminished life expec-

tancy and the low quality or lack of

medical care. The outrages are as fresh

as the latest state laws to hinder African

Americans from voting or the fear of

what might happen if they or their child

got stopped by the police for driving

while Black.14

RESTORING TRUST

Once trust in medical professionals

and the government is weakened, how

can it be created or restored? President

Clinton’s formal apology was an impor-

tant, albeit insufficient, first step. This

past June, there was a moving cere-

mony in the city of Tuskegee itself that

was covered by the Associated Press

and widely reported in the press.15 The

Milbank Memorial Fund, a New York

City–based public health foundation,

acknowledged the role it had played in

supporting the Tuskegee Study by

financing the burial stipends that were

used to induce the families to allow

autopsies on the study’s men to further

the research.16 Accepting the apology

and a major contribution the Fund

made to their education fund, the Voi-

ces for Our Fathers Legacy Foundation

was gracious in its response to this

attempt at healing through historical

reparations.

In the half century since it ended, the

Tuskegee Study has become our

nation’s most powerful symbol of scien-

tific racism, moral blindness, and mind-

numbing arrogance in the name of

“science.” If its tragic story is going to

promote change for the good, however,

it must serve as a reminder to public

health and medical communities of the

long-term consequences of what we

do. We need to provide care instead of

harm, and we must acknowledge the

structural racism that underlies the

mistrust. What we do every day in our

public health and medical practices is

OPINIONS, IDEAS, & PRACTICE

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what matters. Fifty years from now,

when the 100th anniversary of the Tus-

kegee Study arrives, we hope people

will remember its history as the dispar-

ities become history as well.

CORRESPONDENCE Correspondence should be sent to Susan M. Reverby, 65 East India Row 25F, Boston, MA 02110 (e-mail: [email protected]). Reprints can be ordered at https://ajph.org by clicking the “Reprints” link.

PUBLICATION INFORMATION Full Citation: Jones JH, Reverby SM. 50 years after the Tuskegee revelations: why does the mistrust linger? Am J Public Health. 2022;112(11):1538– 1540.

Acceptance Date: August 15, 2022.

DOI: https://doi.org10.2105/AJPH.2022.307088

CONTRIBUTORS Each author contributed equally in the research and writing of this article.

ACKNOWLEDGMENTS We are both grateful to the people in Macon County, Alabama; to attorney Fred Gray; to the Centers for Disease Control and Prevention offi- cials who spoke to us; and to the archivists in the National Archives and at Tuskegee University as we both wrote our histories of the study in Tuskegee/ Macon County.

CONFLICTS OF INTEREST The authors have no conflicts of interest.

ENDNOTES

1. Debbie Elliott, “In Tuskegee Painful History Shadows Efforts to Vaccinate African Americans,” NPR, Febru- ary 16, 2021, https://www.npr.org/2021/02/16/ 967011614/in-tuskegee-painful-history-shadows- efforts-to-vaccinate-african-americans (accessed August 8, 2022).

2. Jean Heller, Associated Press, “Syphilis Victims in US Study Went Untreated for 40 Years,” New York Times, July 26, 1972, https://www.nytimes.com/ 1972/07/26/archives/syphilis-victims-in-us-study- went-untreated-for-40-years-syphilis.html (accessed August 9, 2022).

3. Fred D. Gray, The Tuskegee Syphilis Study (Mont- gomery, AL: New South Press, 2002); James H. Jones, Bad Blood (New York, NY: Free Press, 1981, 1993); Susan M. Reverby, ed., Tuskegee’s Truths (Chapel Hill, NC: University of North Caro- lina Press, 2000); Susan M. Reverby, Examining Tuskegee (Chapel Hill, NC: University of North Car- olina Press, 2009).

4. Many medical studies are named after the places where they take place, as in the Framingham Study, etc. Families involved in this study have asked that it be called “The US Public Health Ser- vice Syphilis Study in Tuskegee/Macon County,

Alabama, 1932–1972” to place the blame for the study on its perpetrators. However, this is a long and awkward title to use repeatedly. We have therefore used the term “Tuskegee Study” here. See Voices for Our Fathers Legacy Foundation, https://www.voicesforfathers.org (accessed August 8, 2022).

5. Vanessa Northington Gamble, “Under the Shadow of Tuskegee: African Americans and Health Care,” American Journal of Public Health 87, no. 11 (1997): 1773–1778. https://doi.org/10. 2105/ajph.87.11.1773

6. Susan M. Reverby, “Compensation and Repara- tions for Victims and Bystanders of the US Public Health Service Research Studies in Tuskegee and Guatemala: Who Do We Owe What?” Bioethics 34, no. 9 (2020): 893–898. https://doi.org/10. 1111/bioe.12784

7. Stephen Thomas and Sandra Crouse Quinn, “The Tuskegee Syphilis Study, 1932 to 1972: Implica- tions for HIV Education and AIDS Risk Education Programs in the Black Community,” American Jour- nal of Public Health 81, no. 11 (1991): 1498–1505. https://doi.org/10.2105/ajph.81.11.1498

8. Mary E. Guinan, “Black Communities’ Belief in AIDS as Genocide: A Barrier to Overcome for HIV Prevention,” Annals of Epidemiology 3, no. 2 (1993):193–195. https://doi.org/10.1016/1047- 2797(93)90136-r

9. Susan M. Reverby, “Political Spectacle of Blame and Apology,” in Examining Tuskegee, pp. 216–226.

10. Evelynn M. Hammonds and Susan M. Reverby, “Taking a Medical History: COVID, ‘Mistrust,’ and Racism,” The Mudsill 1, no. 7 (2021), https:// themudsill.substack.com/p/the-mudsill-vol-1-no-7 (accessed August 17, 2022).

11. “The Ad Council and COVID Collaborative’s ‘It’s Up To You’ Campaign Highlights Stories From Descendants of the US Public Health Service Syphilis Study at Tuskegee to Help Foster Confi- dence in the COVID-19 Vaccines,” June 30, 2021, https://getvaccineanswers.org/legacy (accessed August 30, 2022).

12. April Dembosky, “No, the Tuskegee Study Is Not the Top Reason Some Black Americans Question the COVID-19 Vaccine,” KQED, February 25, 2021, https://www.kqed.org/news/11861810/no-the- tuskegee-study-is-not-the-top-reason-some- black-americans-question-the-covid-19-vaccine (accessed August 30, 2022).

13. Jamila Taylor, “Racism, Inequality, and Health Care for African Americans,” The Century Foundation, December 19, 2019, https://tcf.org/content/report/ racism-inequality-health-care-african-americans/ ?agreed=1 (accessed August 16, 2022).

14. Donna Murch, Assata Taught Me (Chicago, IL: Hay- market Press, 2022).

15. Associated Press, “A Fund Apologizes for Its Role in the Tuskegee Syphilis Study That Targeted Black Men,” June 11, 2022, https://www.npr.org/2022/ 06/11/1104386467 (accessed June 11, 2022).

16. Susan M. Reverby, “The Milbank Memorial Fund and the US Public Health Service Study of Untreated Syphilis in Tuskegee: A Short Historical Reassessment,” June 2022, https://www.milbank. org/quarterly/articles/the-milbank-memorial- fund-and-the-us-public-health-service-study-of- untreated-syphilis-in-tuskegee-a-short-historical- reassessment (accessed July 1, 2022).

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