Human-Centered Design: Bone Marrow Edition

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Wool cap symbolizing support for Amit GuptaWe’ve posted about Amit Gupta beforeTwice, actually.

Just like Sameer and Vinay, Amit Gupta is young, South Asian, and in need of a bone marrow transplant.

In these posts, we’ve written about the fact that South Asians are underrepresented in the bone marrow registry. What we’ve never explored is why South Asians are underrepresented in the bone marrow registry.

Earlier this week, Sadia Latifi over at GOOD wrote an excellent article on her own experience trying to get people in the South Asian community (including her family) to enter themselves into the bone marrow registry. She writes:

 I joined the national registry more than a year ago after hearing another one of those sad stories: That of Maya Chamberlain, a 4-year-old girl with a rare blood disease. I sent for my free registration kit from the National Bone Marrow Program, swabbed my cheek, mailed it back, and forgot all about it. (I was not a match.) Over the phone a few weeks later, I casually mentioned my registration to my mom. She freaked out, telling me (incorrectly) that the process was dangerous and (troublingly) that I first needed to look out for myself. Her reaction bothered me, but I chalked it up to anxious mothering.

Was this anxious mothering? As Latifi later found, this attitude is common in the South Asian community. When her brother and parents refused to register as bone marrow donors, she contacted recruiters at bone marrow donor organizations to ask why this might be. These recruiters noted that resistance to entering the bone marrow registry is oftentimes the result of ignorance–people think that it is painful or puts the donor at risk, when in reality it is akin to donating blood.

But this does not get to the heart of the problem. There is no evidence that South Asians, as as group, know less about bone marrow donation than the general population. So ignorance cannot explain why South Asians, as a group, are underrepresented in the bone marrow registry. The article continues with insight from Ali Khan, co-founder of South Asian Marrow Association of Recruiters:

“Diversity can be divisive,” says Khan, who’s heard from North Indians who don’t want to donate to South Indians, Muslims who don’t want to help non-Muslims, and vice versa. “Our drives in the beginning used to be so divided regionally,” Khan says. “The response was always, ‘Why should I help somebody who doesn’t come from my own region?’”

That attitude speaks to lingering effects of the Indian subcontinent’s long, complicated history. When India was a group of kingdoms, “they were always warring and fighting with each other,” Khan says. “India has never been a nation until now, and the old prejudices have persisted.

Furthermore, Latifi reports that a large portion of South Asian who are called on to donate once they are identified as a match refuse to go through with the process. Usually because the individual registered for a particular friend or family member and is not interested in donating to someone else down the line.

If resistance to donating bone marrow is the result of thousands of years of regional history, what can be done to effect change?

Understanding the source if this resistance is an excellent start. Humanistic design thinking tells us to focus on the person we are trying to help. This may sound easy, but oftentimes, business leaders, nonprofit directors, and political officials draft a “plan of action” that is finalized before any action is taken. Getting everyone on board is paramount; deviation from the plan is discouraged.

While a non-human-centered approach might simply create the goal of getting more South Asians in the bone marrow registry, those who have taken the time to understand the community know that a more nuanced approach is necessary. According to Carol Gillespie, executive director of the Asian American Donor Program, “We can’t just educate the donor. We have to educate the entire family, and that is very unique to the South Asian culture.”

How do you think we can go about educating entire families about entering the bone marrow registry?

 

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