In medical research, diversity matters. It is key to equity in health promotion, health care delivery and treatment.
However, the health care field continues to struggle to recruit African Americans for research studies, according to a new journal article from Health Policy and Management Professor Stephen Thomas.
The article, “Use of a Qualitative Story Deck to Create Scenarios and Uncover Factors Associated with African American Participation in Genomics Research,” describes a technique used to explore the willingness of African Americans to participate in genomics research that Dr. Thomas’s team employed in predominantly Black barbershops in Baltimore and in Prince George’s County, Maryland. It was published in the journal Field Methods.
The mistrust of researchers and health care workers due to “past research abuses, as well as continued experiences of discrimination in health care settings” has been a key factor in the continuing underrepresentation of African Americans in biomedical research.
The distrust has particularly challenged genomic studies, presenting grave issues, the article said.
DNA and biospecimens are ultimately linked to identity, so when they are collected “with an intent for use in future, a host of fears emerge, including the unauthorized use of samples for paternity testing, criminal justice purposes and human cloning.”
To explore potential ways to overcome the deep rooted mistrust, the team developed a Qualitative Story Deck (QSD) technique that allows participants to create improvised stories with a set of variables.
The QSD technique was used to create research scenarios that were based on the race/ethnicity of the researcher, research goal, type of biospecimen requested and institutional affiliation of the researcher.
The 84 participants, 70% of whom were African American men, developed scenarios by picking cards from the categories and then offered their thoughts about their willingness to participate in the research project shown. They also had to describe what led them to consider the decision.
The technique allowed the research team to uncover feelings of distrust that emerged for participants about the racial identity and institutional affiliation of the researcher that may not have emerged in response to more abstract questions.
Although there is sufficient evidence of African Americans’ hesitancy to participate in research, solutions are not equally clear, according to the article. The researchers believe that the use of the QSD has several potential benefits, including helping to unpack decision making factors, quickly build rapport and introducing little known or sensitive topics.
January 11, 2021
New Technique Explores African American Willingness to Participate in Genomics Research through Storytelling
Did You Know
UMD's Neutral Buoyancy Research Facility, which simulates weightlessness, is one of only two such facilities in the U.S.