The Conditions That Foster Harm

Health Equity

“What else don’t we know about?”

So asked several Milbank Memorial Fund Directors in April 2021 as they grappled with the knowledge that the Fund had participated for nearly 40 years in the notoriously immoral US Public Health Service (USPHS) study of untreated syphilis in Tuskegee and Macon County, Alabama.

Even as we set about the journey of discovery, acknowledgment, apology, reparation, and healing around our participation in the study (see our Racial Equity Statement of Purpose for some elements), the Fund wanted to answer an additional question. In its over-115-year history, what else had the organization done that we would not be proud of today? What other bricks had we laid in the structures of racism and prejudice that result in the inequities that hobble our country? What are the lessons for us and organizations like ours?

To answer those questions, we committed to an investigation and to transparency about its findings. Seeking competence, comprehensiveness, and independence, we hired a law firm with extensive audit experience to conduct an investigatory audit. We gave them access to board minutes and other records from our office and our archives, as well as all the publications by past or present Fund employees that could be found. They contracted with a university-based medical ethicist and public health historian to assess anything that appeared unethical. We got out of their way.

The greatest opportunity for ethical harm and immoral activity lies where there are direct relationships between people involving imbalances of power. Although the Fund has never provided medical care, and now focuses on work with health policy leaders, for much of its history it participated in and funded research involving human subjects, as in the study of untreated syphilis. The auditors focused their attention on this research.

In assessing projects for unethical activity, the auditors applied three principles:

  1. Respect for persons: protecting the autonomy of all people and treating them with courtesy and respect and allowing for informed consent. Researchers must be truthful and conduct no deception;
  2. Beneficence: the philosophy of “do no harm” while maximizing benefits for the research project and minimizing risks to the research subjects; and
  3. Justice: ensuring reasonable, non-exploitative, and well-considered procedures are administered fairly — with the fair distribution of costs and benefits to potential research participants — and equally.

These principles were applied in three areas of human subject research: the administration of informed consent, the assessment of risk and benefits of the intervention, and the selection of subjects.

So, what did they find? In their investigation of Fund work, the auditors identified 25 separate activities (financed or staffed by the Fund) of potential concern because their subject area posed a relatively higher risk of ethical misconduct. Upon further investigation, the auditors found six of these studies involved lapses that would be considered unethical by current standards — mostly due to a lack of informed consent. All were conducted prior to 1950. We deeply regret our involvement in them. Our participation in them is another part of our history that we are not proud of.

Much can be learned by considering the study topics and identities of the groups involved in the six studies:

  • Indigenous people in settlements in Manitoba, Canada (physical examinations to evaluate nutrition status)
  • Native American schoolchildren in the western United States (presence of rheumatic fever)
  • Schoolchildren in New Haven, Connecticut (presence of rheumatic fever)
  • Third-shift aircraft workers in Southern California (dietary analysis and effects of nutrition supplements)
  • Inhabitants of the Mulberry neighborhood in New York City (effects of nutrition education)
  • Inhabitants of the Red Hook neighborhood in New York City (tuberculosis incidence)

In each case, researchers were conducting studies they thought would improve or ameliorate conditions of the study subjects. But in each case, the study subjects were in a weaker position of economic and social power relative to the researchers. Articles summarizing the research show the researchers’ striking detachment and paternalism toward the study subjects.

Each of the studies can be seen as a part of larger unjust structures of systemic injustice that result in harm to disadvantaged groups. The survey in Northern Manitoba was of particular concern to us because it was the first of subsequent studies in this population, in which the Fund was not involved, that have been identified as unethical.

From Damocles to Voltaire to Stan Lee, the adage remains true: with power comes responsibility. Until inequities in power are eliminated, those with power (including researchers and funders and policymakers) have a responsibility for empathy, procedural justice, and public accountability. Perhaps the only positive legacy of the USPHS study of untreated syphilis is the identification and elevation of the principle of informed consent, based on the premise that each human being has dignity and worth.

Every person should be treated — as Immanuel Kant reminds us — as ends, not means. Each person is the main character in their own story and not an object in another person’s story. The researchers failed to meet these standards in each of these studies, and because of its participation, the Fund failed as well. Instead, the Fund missed opportunities to act ethically and added more bricks to walls of injustice and harm.

These actions should not be excused as errors of another time. The Milbank Memorial Fund has adopted a Racial Equity Statement of Purpose to hold itself publicly accountable for commitments and specific governance, operational, and programmatic activities to address systemic racism and reduce the risk of exclusive or harmful practices.

And the abuses of power and the dehumanization of groups of people found in these studies remain rife in our society. They occur when people are deceived into traveling to other states so political points can be scored, victimized by hate speech on social media to quell fears of difference, or targeted for isolating legislation to “protect children.”

Harms and injustices accrete.

We must proceed humbly and with compassion. Every day we are presented with chances to treat others as ends in themselves, not means. How do we respond?