An Exploration of Attitudes Among Black Americans Towards Psychiatric Genetic Research

Abstract

With increasing emphasis on understanding genetic contribution to disease, inclusion of all racial and ethnic groups in molecular genetic research is necessary to ensure parity in distribution of research benefits. Blacks are underrepresented in large-scale genetic studies of psychiatric disorders. In an effort to understand the reasons for the underrepresentation, this study explored black participants’ attitudes towards genetic research of psychiatric disorders. Twenty-six adults, the majority of whom were black (n = 18) were recruited from a New York City community to participate in six 90-minute focus groups. This paper reports findings about respondents’ understanding of genetics and genetic research, and opinions about psychiatric genetic research. Primary themes revealed participants’ perceived lack of knowledge about genetics, concerns about potentially harmful study procedures, and confidentiality surrounding mental illness in families. Participation incentives included provision of treatment or related service, monetary compensation, and reporting of results to participants. These findings suggest that recruitment of subjects into genetic studies should directly address procedures, privacy, benefits and follow-up with results. Further, there is critical need to engage communities with education about genetics and mental illness, and provide opportunities for continued discussion about concerns related to genetic research.

Perspectives of surrogate decision makers for critically ill patients regarding gene variation research

“…Consistent with prior studies, principal concerns of SDMs were that a genetic sample might be diverted for inappropriate purposes, or would lead to insurance and employment discrimination. 14,18,23,27 However, in contrast to these previous investigations, was our finding that SDMs perceived the risk associated with gene variation research largely as the risk associated with acquiring the genetic sample (i.e., whether or not sample acquisition involved an invasive procedure), as opposed to characteristics of the sample itself. This altered frame of reference might reflect the acuteness of the illness of their loved ones, as well as the number and nature of medical interventions these individuals had recently undergone.…”

“…Accordingly, focus groups (FGs) were conducted in conference rooms adjoining the ICUs while the loved ones of SDMs received treatment for their critical illness. FG study guides were developed on the basis of themes related to gene variation research, including general familiarity with genetic data, 23 features that might render genetic data distinct from nongenetic data, 13 concerns about misuse, 12,23 confidentiality, 18,23 and future use. 17 Hypothetical cases, vignettes, and samples of the institutional review board (IRB)-approved consent language were used to generate discussion.…”

“…10,11 Although a number of investigations have examined attitudes regarding gene variation research, the manner in which the exigencies of acute illness affect perceptions of genetic data collection is largely unknown. [12][13][14][15][16][17][18][19][20][21][22][23][24][25][26][27][28][29][30] Conceivably, SDMs do not possess sufficient insight as to the nature of genetic data to permit informed judgment. Alternatively, the emotional distress that SDMs experience potentially overwhelms concerns that genetic data may possess characteristics that render them distinct from other commonly collected types of information.…”

Ethnic disparities in the perception of ethical risks from psychiatric genetic studies

“…In support of this stance, our ongoing analysis of the subsection for perception of benefits in the QGR indicates more optimistic views among Black participants that BD genetic studies could lead to prevention of BD and to development of gene therapy. Murphy and Thompson [2009] however, found no support for altruism as an important factor for participation in psychiatric genetic studies among Blacks in their community sample with 72% mental illness history. Rather, they found that Blacks with less education, who are unwilling to participate in genetic studies, expressed more interest in participating only for financial incentives.…”

“It takes a village”: multilevel approaches to recruit African Americans and their families for genetic research

“…The resulting breast cancer genetic epidemiology study, "The Jewels in Our Genes study," was designed to search for novel genetic loci associated with breast cancer in African American pedigrees. Our study was the first of its kind; reasons for this include challenges of identification and access to appropriate families, failure to recruit adequate sample sizes, and failure of inclusion of this audience and these patients in the scientific discovery process (Johnson et al 2011;Murphy and Thompson 2009). …”