Perceptions of family history and genetic testing and feasibility of pedigree development among African Americans with hypertension

Abstract

Background Pedigree development, family history, and genetic testing are thought to be useful in improving outcomes of chronic illnesses such as hypertension (HTN). However, the clinical utility of pedigree development is still unknown. Further, little is known about African Americans’ (AAs’) perceptions of family history and genetic testing. Aims This study examined the feasibility of developing pedigrees for AAs with HTN and explored perceptions of family history and genetic research among AAs with HTN. Methods The US Surgeon General’s My Family Health Portrait was administered, and 30–60 minute in-person individual interviews were conducted. Descriptive statistics were used to analyze pedigree data. Interview transcripts were analyzed with content analysis and constant comparison. Results Twenty-nine AAs with HTN were recruited from one free clinic (15 women, 14 men; mean age 49 years, SD 9.6). Twenty-six (90%) reported their family history in sufficient detail to develop a pedigree. Perceptions of family history included knowledge of HTN in the family, culturally influenced family teaching about HTN, and response to family history of HTN. Most participants agreed to future genetic testing and DNA collection because they wanted to help others; some said they needed more information and others expressed a concern for privacy. Conclusion The majority of AAs in this sample possessed extensive knowledge of HTN within their family and were able to develop a three generation pedigree with assistance. The majority were willing to participate in future genetic research.

The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies

“…The primary facilitators of participation were receiving direct benefits including return of individual results to participants ( n = 8; Frazier et al, ; Halbert et al, ; Hull et al, ; Jenkins et al, ; Lakes et al, ; Murphy & Thompson, ; Pettey et al, ; Simon et al, ), fulfillment of information needs ( n = 6; Buseh et al, ; Hull et al, ; Lakes et al, ; Pettey et al, ; Rew et al, ; Sanderson et al, ), and upfront assurance of privacy and confidentiality ( n = 3; Buseh et al, ; Hull et al, ; Pettey et al, ). Participants desired direct benefits, such as monetary compensation, free healthcare services, or hospitable accommodation while participating, as well as to receive individual results from testing (Frazier et al, ; Halbert et al, ; Hull et al, ; Jenkins et al, ; Lakes et al, ; Murphy & Thompson, ; Pettey et al, ; Simon et al, ). Common information needs included wanting to know about the logistics of the study, the validity of the test, the context of the disease being studied, whether future research would utilize the samples, and the conduct of the researchers and institutions involved in the study (Buseh et al, ; Hull et al, ; Lakes et al, ; Pettey et al, ; Rew et al, ; Sanderson et al, ).…”

“…Concerns about participation, reasons not to test or receive results from testing, and factors that presented barriers to participation in research were assessed by 18 publications (Akinleye et al, ; Buseh et al, , ; Culhane‐Pera et al, ; Frazier et al, ; Freedman et al, ; Halbert et al, , ; Hooper et al, ; Hull et al, ; Jenkins et al, ; Kinney et al, ; Lakes et al, ; Murphy & Thompson, ; Pettey et al, ; Rew et al, ; Sanderson et al, ; Simon et al, ). The most commonly cited reasons not to participate in genetic testing or research included privacy and confidentiality concerns ( n = 7; Buseh et al, ; Halbert et al, ; Hull et al, ; Murphy & Thompson, ; Pettey et al, ; Sanderson et al, ; Simon et al, ), use of participants’ genetic information for other research purposes that were not consented for or were undesirable ( n = 7; Buseh et al, ; Halbert et al, , ; Hull et al, ; Jenkins et al, ; Pettey et al, ; Sanderson et al, ), concerns about insurance or employment discrimination ( n = 5; Akinleye et al, ; Buseh et al, , ; Frazier et al, ; Pettey et al, ), concerns about risks or harms of the study procedure ( n = 5; Hooper et al, ; Jenkins et al, ; Murphy & Thompson, ; Pettey et al, ; Simon et al, ), and individual results not being made available to participants ( n = 5; Culhane‐Pera et al, ; Halbert et al, ; Jenkins et al, ; Lakes et al, ; Simon et al, ).…”

“…The majority of participants’ organizational‐ and community‐influenced considerations about research constituted barriers to participation. Overall, in this selection of articles, the barriers included concerns about being viewed negatively or ruining participants’ reputations in the community if test results were perceived as negative, apprehension about sharing health information in cultures where this is discouraged or stigmatized, cultural beliefs that prevented participation such as the desire for the body to remain whole upon death (negating the ability to provide biospecimen), group‐based medical mistrust in providers and healthcare systems, fear of genetics being used to socially oppress certain groups, concerns about government use of participants’ biological material, doubts that research findings would be beneficial to minority communities, and lack of physical access, awareness, and logistical constraints to participation in research (Buseh et al, , ; Frazier et al, ; Halbert et al, , ; Kinney et al, ; Lakes et al, ; Murphy & Thompson, ; Pettey et al, ; Simon et al, ).…”

“…The majority of participants believed genetic research produces beneficial outcomes to society and that there are personal benefits to individuals who participate in genetic research (Akinleye et al, 2011;Buseh et al, 2014Buseh et al, , 2012Frazier et al, 2006;Freedman et al, 2013;Halbert, Gandy, Collier, & Shaker, 2006;Halbert, McDonald, Vadaparampil, Rice, & Jefferson, 2016;Hooper et al, 2013;Hull et al, 2008;Jenkins et al, 2011;Kinney et al, 2006;Lakes et al, 2013;Murphy & Thompson, 2009;Pettey et al, 2015;Rew et al, 2010;Sanderson et al, 2017). The most often cited reasons for participating in genetic testing and research were to learn more information, to contribute to the development of medical treatments and prevention of disease, and to positively impact future generations.…”

The social gradient of taking a family history

“…In this issue of European Journal of Cardiovascular Nursing, Pettey et al 7 present findings from a qualitative study examining perceptions and feasibility of developing a family history in an African American patient population with hypertension. Hypertension is a chronic cardiovascular condition of significant public health importance.…”