By Carlton Haywood Jr.
Although last month’s unemployment rate of 6.9 percent here in Baltimore seems like a good sign, you might ask whether joblessness is as hot a topic for bioethicists. I would argue that the answer is yes, at least from a “social justice” perspective. Basically, that broad-sounding perspective demands that we examine how society as a whole can impact the well being of individuals, which has been a fundamental concern for bioethicists since the start.
A colleague recently published a study  that illustrates this connection. In the November issue of the Journal of Health Care for the Poor and Underserved, social psychologist Shawn Bediako, at the University of Maryland, Baltimore County, sought to identify factors that affect unemployment among African-Americans with sickle cell disease —a condition that I live with.
High unemployment among African-Americans with the disease has already been documented, with estimates as high as 60 percent. Currently, about 89,000 to 100,000 Americans live with the genetic blood disorder, whose most notorious symptom is the pain crisis caused when red blood cells sickle and become unable to move through vessels and deliver oxygen throughout the body.
When I experience an acute onset of pain from my disease—often referred to as a “sickle cell crisis”—I must either cope on my own or suddenly drop work altogether and go to the hospital. So Bediako’s study really hit home. But it also fired me up for another reason: The bioethics institute where I am on faculty does examine, as a central concern, how a person’s health is affected by greater social forces.
I know I am more fortunate than many working adults with sickle cell disease. At a personal level, my colleagues completely understand and empathize when symptoms sideline me. But at the Johns Hopkins Berman Institute of Bioethics , we also insist that entire entities and social structures—whether that’s an employer, economic system or national government—must observe moral imperatives that foster a person’s total well being and social equality more broadly.
At times, health researchers, myself included, pay too little attention to anything beyond what happens when patients seek medical treatment. Bediako’s study, though, is a reminder that the research community must critically and systematically examine how the world treats the entirety of those with sickle cell (or other chronic diseases), and whether larger social justice issues are being addressed along with specific health issues, such as pain and disease control.
Admittedly, the bulk of my research  thus far has focused on the perspectives of adults with sickle cell disease in the clinical setting, specifically studying what affects trust in those one-on-one interactions with medical professionals. But at the end of the day, regardless of the quality of medical care provided, the experiences that patients have outside the hospital—everything from employment to interpersonal relationships—must also be considered.
I don’t mean to minimize the importance of studying the issues we face in the clinical setting. But I can attest that, for my fellow patients and I, medical treatment can at times be the least of our worries. Hence, a broader approach to exploring the needs of patients, one based on social justice concerns , is needed—whether they have sickle cell disease or a different chronic mental or muscular condition.
If there is an overarching mission that guides my research on adults with sickle cell disease, it’s that I want to empower them and help them become better advocates for themselves. For instance, how can sickle cell patients obtain appropriate treatment for extreme pain from doctors who are reluctant to give highly addictive medication to someone who shows up suddenly and repeatedly in an emergency room? Because the majority of sickle cell patients in this country are African-American, stereotypes and biases about race and drug addiction often make this a challenging situation for both the physician and patient.
Because clinicians can’t visually confirm the authenticity of a pain crisis in the same way as, say, a broken-bone injury, they must rely on a patient’s words. And in some cases, patients need to be especially assertive in seeking treatment.
However, as Bediako found, assertiveness may not be good in all contexts. Individuals in his study who were defined as more assertive were, on average, less likely to be employed. What is it about assertiveness in this context that led to this inverse relationship? This finding points to the need for greater conceptual clarity regarding the expression and meaning of assertiveness in different contexts—especially as I work toward making adults with sickle cell disease better advocates for themselves.
On the other hand, Bediako also found that those who said the disorder had a positive impact on their lives were also more likely to be employed. How could someone with such a debilitating condition see it as beneficial? In essence, they said that the disease made them who they were. And just maybe, those who embraced their burden coped better with adversity in general and had a more positive outlook on life, which is essential for finding work.
At this point, I’m merely offering up educated guesses. What we really need is more research like Bediako’s, that examines aspects of a person’s health and well-being beyond the hospital doors. Ensuring the total well being of people living with any chronic disease or disability means not only studying how they are treated by clinicians, but also how these individuals are impacted by greater societal forces. That’s the broader appreciation that bioethicists, and others, must have when framing our research.
Finally, Bediako’s research is an affirmation that those of us who examine issues through the lens of social justice aren’t overreaching the boundaries of bioethics, but that we see the bigger picture.
Carlton Haywood Jr., Ph.D., M.A., is a core faculty member of the Johns Hopkins Berman Institute of Bioethics; an assistant professor in the Department of Hematology at the Johns Hopkins School of Medicine; and associate faculty in the Welch Center for Prevention, Epidemiology and Clinical Research.