Understanding Tuskegee's Legacy (Part 2)

Second of two parts. This story is constructed entirely from Tweets in a chat organized by National Science & Technology News Service. See the original transcript here.  

To understand the Tuskegee study, you have to understand it within the context of racism. The US apologized for the Tuskegee Syphilis Experiment, led by the US Public Health Service on rural African American men, 65 years after it occurred. President Clinton apologized for the government’s involvement. But was that enough?

Tuskegee plays a role in minimal participation of blacks in clinical trials. The impact of the syphilis study can be seen today in huge health disparity gaps. Lingering mistrust of clinical research is real and valid even for those of us in the industry.

It matters because it still impacts why so few clinical trials include African-Americans and other people of color. Mistrust of medicine leads to many people not asking questions of doctors about their care and to low medicine adherence.

Tuskegee should make us wary about all invocations of research for “the greater good” -- great and good for whom? Who decides?

Consider that many people are still afraid to ask their own doctors demanding or insisting questions. Minorities and vulnerable people need to ask more questions. Easier said than done  with underlying fear and mistrust. 

Fear is a byproduct of powerlessness. So you don't treat "black mistrust" simply with more information, but with empowerment. Trust-building is not a function of giving people facts. I wish public health researchers understood this. We need more minorities and people of color in the feeder disciplines that lead to folks going into bioethics.

We should be at community health fairs and screenings, libraries, blood drives, etc. True community participation in research requires sharing power and benefits from research. I've heard researchers say they don't know where to find patients to include. If you don't look for us, we can’t be there.

I wonder about how much the men and their families actually trusted the senior officials and just deferred instead. The men were denied treatment for their disease for many, many years even after treatments became available.

Informed consent means nothing if you don't understand the implications. The main reason I hear when people give consent: "Maybe this will help my kids, grandkids, etc."

Are there structural barriers preventing minority patients from increasing research participation? I think that, as much as a lack of diversity, it is a lack of cultural awareness on the part of the researchers. Non-minority researchers need to educate themselves and then advocate for peers to be better.

Mistrust + lacking public health outreach = research gaps.

Discussions need to be proactive. It shouldn't be relegated to Black History Month at our institutions. Educate ourselves as to what questions to ask researchers and insist those questions are answered to their satisfaction.

What is mistrust turning us into? Perhaps we should invest more in treating ailing social order: inequality makes us all sick.

Community-based participatory research is so important. Partnering with communities helps build trust. Work WITH people of color, and not ON, and trust will be built. 

Let’s reframe mistrust -- not as an OBSTACLE to overcome, but as a set of INSIGHTS into flaws of the medical and social system. “Cultural mistrust” can be protective, even healthy and appropriate. Patients know when to trust. They can feel it.

Science is not an inherently noble value or cause. Applying bioethics allows what we do to be noble. Without justice at center, bioethical principles can be used to legitimate unjust practices. IMO, too often people rely on "but the IRB said it's OK." Institutional Review Boards are human, too.

I'd like to think that we've learned to be more ethical in research as a result of Tuskegee. Prison studies say otherwise. Applying bioethics is key. Deadlines, timelines, dollars & powers that be will always exist. Bioethics keep us honest.

Bioethics 101: these are *real* people with *real* lives, not petri dishes and control agents. 

As we discuss importance of research, remember importance of developing relationships with and within communities  Too many scientific "centers of excellence" and not enough community engagement -- also part of the trust problem.

The original sin of Tuskegee was the devaluation of black humanity.

I've learned there’s too much emphasis on "black distrust" as cultural pathology: W.E.B. DuBois: "How does it feel to be a problem?" 

Saying "black distrust" makes it sound like there's no issue with institutional trustworthiness. We need to place more emphasis on trustworthiness of our institutions. "Black distrust" diverts attention. 

I've also learned that African-Americans can teach researchers a lot about how to do our work, if we just ask. We need a scientifically literate population. It's a public health issue!

The problem was devaluation of black humanity, which helps explain so much in our community. We need to get past Tuskegee and expand the conversation of minorities and ethics.

This is why diversity of the research workforce is so key. We must have diverse investigators to inform equity.

We have a long and winding road ahead of us, and African-Americans have legitimate concerns re: research. Listen to community. Don’t make assumptions. Ask questions before acting. The solution isn't to cure cultural pathology, It's to end racism in research.

We can never give up on our quest to stay in the biomedical science enterprise. There is strength in diversity.

Institutions need to show actual steps they've taken and are taking to protect patients; no ambiguous bullet points. Healthy skepticism is good. Keep asking questions. Refuse to be ignored. Be your own advocate.

Biomedical research industry has to be more of an advocate in all socio-economic realms that impact health disparities. What more should the biomedical research community do to earn the trust of people of color? Shut up and listen.

Do you believe lack of diversity in science researchers makes a difference in building trust?

Can I *like* that question about a billion times!?

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