Perceptions of African-American Health Professionals and Community Members on the Participation of Children and Pregnant Women in Genetic Research

Abstract

Background: As genetic research gains more prominence in society, ethical concerns and the need for safeguards in the participation of children and pregnant women have increased. This study examined the perspectives of African-American health professional and community members on genetic research involving children and pregnant women. Methods: We used a mixed-methods approach to collect and analyze survey data and qualitative data from focus groups of community members and structured interviews of health professionals. Results: We found that community members had significantly more favorable attitudes toward participation of children and pregnant women in genetic research than health professionals. Health professionals did not differ significantly from community members in their perceived understanding of genetic research. Emergent themes included limited knowledge of genetic research and distinction of biomedical research and clinical care, ethical concerns about confidentiality and potential harm, and the need to protect children and pregnant women. Participants expressed high interest and favorable attitude towards genetic research, despite limited genetic knowledge and concerns of potential harm to children and pregnant women. Some participants felt that genetic research findings could help dispel stigma and reduce discrimination, especially in mental illness. Conclusion: Findings suggest that the recruitment of participants into genetic research should directly address privacy and benefit concerns, and limited knowledge of physical and mental illness genetic research. There is a critical need to invest and engage racial/ethnic communities early, provide education on genetics, mental illness, and translate and share research findings with these communities.

Parental Perceptions About Informed Consent/Assent in Pediatric Research in Jordan

“…The informed consent process in pediatric research is essential, as it reflects respect to individuals and to protect the participating children from all possible harm that could be caused by their enrollment in the research (De Lourdes Levy, et al, 2003; Ngui, et al, 2014). …”

“…The guardian consent and child’s assent should be obtained prior to a child’s participation in research (Leibson & Koren, 2015; Unguru, 2011). This process is crucial to preserve children’s rights during their participation in research, including protection from possible harm, violation of privacy, legal risks, and psychological or emotional stress (De Lourdes Levy, et al, 2003; Ngui, Warner, & Roberts, 2014). …”

A genome-wide association study of energy intake and expenditure

“…The major concern is measurement error in energy intake assessed via FFQ. Correlations between energy intake from a single FFQ with two to four weeks of diet records are in the range of 0.3 to 0.4 [ 73 ]. We used the average of between two and seven FFQs in order to somewhat reduce within-person measurement error [ 34 ]; however, our assessment is still far from perfect.…”

Successful recruitment and retention of diverse participants in a genomics clinical trial: a good invitation to a great party

“…3,4 Potential benefits for patients to participate in research may not sufficiently outweigh concerns. 5 It is important to intentionally, actively, and thoughtfully design studies with inclusivity in mind. 6 Recruitment difficulties may be magnified in genomic research, where it is critical to include diverse populations to facilitate equal access to scientific breakthroughs, address biases and inaccuracies of findings that can occur when research is conducted solely in nonminority groups, and to use findings to guide health practices, policies, and address health disparities.…”

“…7,8 Known barriers to genomic testing and research participation in genomic studies such as insurance coverage, mistrust, complex trial or consent processes, fear of bad news, time required, and distance are amplified in minority populations. 4,5,[9][10][11] African Americans have a lower predisposition toward genomic studies and are more likely to report them as harmful to society. They also have additional concerns about privacy and whether genomic information will be used against them by the government, health-care system, or law enforcement-issues that disproportionately affect them and are seen through a lens of historic discrimination.…”