Unraveling non‐participation in genomic research: A complex interplay of barriers, facilitators, and sociocultural factors.
Although genomic research offering next‐generation sequencing (NGS) has increased the diagnoses of rare/ultra‐rare disorders, populations experiencing health disparities infrequently participate in these studies. The factors underlying non‐participation would most reliably be ascertained from indivi...
| Publicado en: | Journal of Genetic Counseling Vol. 32; no. 5; pp. 993 - 1009 |
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| Autores principales: | , , , , , , , , , , , , , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Oct2023
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=172804372&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 172804372 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Oct2023 vid: 32 iid: 5 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 172804372 162830096 172804372 172804372 10.1002/jgc4.1707 172804372 ppf: 993 ppct: 16 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Unraveling non‐participation in genomic research: A complex interplay of barriers, facilitators, and sociocultural factors. aug: au: McConkie‐Rosell, Allyn Spillmann, Rebecca C. Schoch, Kelly Sullivan, Jennifer A. Walley, Nicole McDonald, Marie Hooper, Stephen R. Shashi, Vandana Adam, Margaret Adams, David R. Alvey, Justin Amendola, Laura Andrews, Ashley Ashley, Euan A. Azamian, Mahshid S. Bacino, Carlos A. Bademci, Guney Balasubramanyam, Ashok Baldridge, Dustin Bale, Jim affil: Division of Medical Genetics, Department of Pediatrics, Duke University School of Medicine and Duke Health System, Durham North Carolina,, USA sug: subj: Research Subject Recruitment Sequence Analysis Genetic Research Genomics Health Services Accessibility Socioeconomic Factors Culture Trust Human Parents Child Adult Rural Areas Medically Underserved Area Exploratory Research Emotions Confidence Health Education Healthcare Disparities Research Subject Retention Genetic Counseling Funding Source Child: 6-12 years Adult: 19-44 years ab: Although genomic research offering next‐generation sequencing (NGS) has increased the diagnoses of rare/ultra‐rare disorders, populations experiencing health disparities infrequently participate in these studies. The factors underlying non‐participation would most reliably be ascertained from individuals who have had the opportunity to participate, but decline. We thus enrolled parents of children and adult probands with undiagnosed disorders who had declined genomic research offering NGS with return of results with undiagnosed disorders (Decliners, n = 21) and compared their data to those who participated (Participants, n = 31). We assessed: (1) practical barriers and facilitators, (2) sociocultural factors—genomic knowledge and distrust, and (3) the value placed upon a diagnosis by those who declined participation. The primary findings were that residence in rural and medically underserved areas (MUA) and higher number of barriers were significantly associated with declining participation in the study. Exploratory analyses revealed multiple co‐occurring practical barriers, greater emotional exhaustion and research hesitancy in the parents in the Decliner group compared to the Participants, with both groups identifying a similar number of facilitators. The parents in the Decliner group also had lower genomic knowledge, but distrust of clinical research was not different between the groups. Importantly, despite their non‐participation, those in the Decliner group indicated an interest in obtaining a diagnosis and expressed confidence in being able to emotionally manage the ensuing results. Study findings support the concept that some families who decline participation in diagnostic genomic research may be experiencing pile‐up with exhaustion of family resources – making participation in the genomic research difficult. This study highlights the complexity of the factors that underlie non‐participation in clinically relevant NGS research. Thus, approaches to mitigating barriers to NGS research participation by populations experiencing health disparities need to be multi‐pronged and tailored so that they can benefit from state‐of ‐the art genomic technologies. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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