#BLACKandSTEM 09/18/14

Today’s #BLACKandSTEM topic and blog post comes from #BLACKandSTEM-er @DAlMlA (two lower case Ls) who is a graduate student investigating gene therapy approaches to treating inherited hemoglobin disorders.

Research Studies and Clinical Trials

As a graduate student in a biomedical sciences program, I understand that in order for any of the research which we conduct to be translated into something useful for human “consumption”, there needs to be several stages of rigorous testing. The final stages of this work flow are usually small scale human studies and clinical trials. However, it never really occurred to me to enroll in any of the research studies that I saw posted in the hallways of academic buildings. That is, until I took a Biostatistics class where several individuals raised their hands when asked about study participation. Since then I’ve successfully participated in three research studies and I have a screening for another scheduled for this morning.

My own participation in these studies has led me to the realization that in research studies and more importantly, clinical trials, blacks are underrepresented among the participants. With one of the studies, the only reason I heard about it was because the coordinator was specifically looking for black participants to meet the requirements.

Despite the increasing diversity of the US population, adult minorities still make up a small fraction of individual who enroll in clinical trials. In a recent paper by Chen et al (http://onlinelibrary.wiley.com/doi/10.1002/cncr.28575/abstract), it was found that fewer than 5% of cancer trial participants are minorities (non-white). This is especially troubling since blacks are the group with the highest incidence of cancer. Several other diseases (Sickle Cell Disease, Obesity, Diabetes, Heart Disease and Stroke) disproportionately affect blacks and in order for effective treatments to be discovered, we need to be enrolling in studies and trials in larger numbers.

As many are aware the medical/pharmaceutical establishment has a storied history with the black (and other minority) community both here and abroad. There is deep-seated distrust which though well founded, needs to be addressed in order for us to contribute to a better understanding of certain diseases and benefit from advances in treatment options.

Questions:

Have you ever been asked to or participate(d) in a Research Study/Clinical Trial?

Are you interested in participating in Research Studies/Clinical Trials?

What do you think are some of the reasons for the low level of participation Research Studies/Clinical Trials by blacks and other minorities?

What can we as #BLACKandSTEM do to encourage members of our communities to enroll in trials and studies?

Resource:

Project IMPACT: http://impact.nmanet.org/

Remember to use the #BLACKandSTEM hashtag!

Additional resources from the #BLACKandSTEM community:

Will Black People Ever Trust Clinical Trials by Danielle N. Lee @DNLee5 for Ebony Magazine online

Discussion of ramifications of the Tuskegee Experiments by National Science & Technology News Service @theDarkSci

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