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Use of genetic risks in pediatric organ transplantation listing decisions: A national survey

Graf, Madeline ; Char, Danton ; Hanson‐Kahn, Andrea ; Magnus, David

Pediatric transplantation, 2019-06, Vol.23 (4), p.e13402-n/a [Periódico revisado por pares]

Denmark: Wiley Subscription Services, Inc

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Título:
Use of genetic risks in pediatric organ transplantation listing decisions: A national survey
Autor: Graf, Madeline ; Char, Danton ; Hanson‐Kahn, Andrea ; Magnus, David
Assuntos: Adult ; bioethics ; Breast Neoplasms - genetics ; Child ; contraindications ; Decision Making ; Disease Progression ; Exome ; Family Health ; Female ; Genes, BRCA1 ; Genes, p53 ; genetic predisposition testing ; Genetic Predisposition to Disease ; Genetic screening ; Genetic Testing ; Genetic Variation ; Heart transplantation ; Heart Transplantation - methods ; Heart Transplantation - standards ; Humans ; Huntington Disease - genetics ; Internet ; Kidney transplantation ; Kidney Transplantation - methods ; Kidney Transplantation - standards ; Liver transplantation ; Liver Transplantation - methods ; Liver Transplantation - standards ; Male ; organ transplantation ; Organ Transplantation - methods ; Organ Transplantation - standards ; Ovarian Neoplasms - genetics ; Patient Selection ; pediatric transplantation ; Pediatrics ; predictive genetic testing ; Risk Factors ; Surveys and Questionnaires ; Tissue and Organ Procurement - methods ; Tissue and Organ Procurement - standards ; Transplants & implants ; United States ; Waiting Lists ; Whole Genome Sequencing
É parte de: Pediatric transplantation, 2019-06, Vol.23 (4), p.e13402-n/a
Notas: ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
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MG, DC, and DM conceptualized the initial study idea. MG designed and created the initial survey draft and subsequent revisions, performed recruitment, data collection and analysis, and drafted the initial manuscript and subsequent revisions. DC contributed to survey design, critically reviewed and revised manuscript drafts, and approved the final manuscript as submitted. AK reviewed and revised the survey instrument and manuscript and approved the final manuscript as submitted. DM helped design the survey, reviewed and revised the study instrument, critically reviewed the data analysis, examined and revised each manuscript draft, and approved the final manuscript as submitted.
AUTHORS’ CONTRIBUTIONS
Descrição: There is a limited supply of organs for all those who need them for survival. Thus, careful decisions must be made about who is listed for transplant. Studies show that manifesting genetic disease can impact listing eligibility. What has not yet been studied is the impact genetic risks for future disease have on a patient's chance to be listed. Surveys were emailed to 163 pediatric liver, heart, and kidney transplant programs across the United States to elicit views and experiences of key clinicians regarding each program's use of genetic risks (ie, predispositions, positive predictive testing) in listing decisions. Response rate was 42%. Sixty‐four percent of programs have required genetic testing for specific indications prior to listing decisions. Sixteen percent have required it without specific indications, suggesting that genetic testing may be used to screen candidates. Six percent have chosen not to list patients with secondary findings or family histories of genetic conditions. In hypothetical scenarios, programs consider cancer predispositions and adult‐onset neurological conditions to be relative contraindications to listing (61%, 17%, and 8% depending on scenario), and some consider them absolute contraindications (5% and 3% depending on scenario). Only 3% of programs have formal policies for these scenarios, but all consult genetic specialists at least “sometimes” for results interpretation. Our study reveals that pediatric transplant programs are using future onset genetic risks in listing decisions. As genetic testing is increasingly adopted into pediatric medicine, further study is needed to prevent possible inappropriate use of genetic information from impacting listing eligibility.
Editor: Denmark: Wiley Subscription Services, Inc
Idioma: Inglês

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Use of genetic risks in pediatric organ transplantation listing decisions: A national survey

Graf, Madeline ; Char, Danton ; Hanson‐Kahn, Andrea ; Magnus, David

Denmark: Wiley Subscription Services, Inc

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