Crowdsourced analysis of factors and misconceptions associated with parental willingness to donate their child's organs

Abstract

We evaluated factors associated with a parental willingness to donate their child's organs. A twenty‐one‐question survey was administered to US parents with at least one child to measure organ donation acceptability and brain death beliefs using an online crowdsourcing medium, Amazon's Mechanical Turk Prime. We collected 425 surveys; 76% were willing to donate their own and 65% willing to donate their child's organs. Parents who agreed brain death was synonymous with death (47%) were 2.37 times more willing to donate. Compared with White respondents, Black (OR 5.27, CI 2.81, 9.88) and Hispanic (OR 2.24, CI 1.06‐4.75) participants were more likely to believe doctors “steal organs from patients” and “declare someone dead based on their skin color” (OR 4.97, CI 2.65‐9.32; OR 2.19, CI 1.01‐4.72, respectively). Lower income participants were also more likely to believe doctors “steal organs from patients,” OR 0.81 (95% CI 0.68‐0.96 for increasing income) and “declare someone dead based on how much money they have,” OR 0.80 (95% CI 0.67‐0.96 for increasing income). Confusion surrounding brain death and skepticism (particularly among racial and ethnic minorities and lower socioeconomic groups) toward doctors' motivations for donation contribute to lack of parental willingness to donate.

Saudi Parents' Knowledge and Attitude towards Pediatric Organ Donation in Al-Riyadh, Kingdom of Saudi Arabia

“…There is a slight misconception of the brain death definition in the present study. this study shows near to half of the parents knows the definition of brain death 41.7% while surprisingly 70.9% in turkey [4], as well as 47.1% in the United States [2].…”

“…In our study, 39.5% agree that there is no chance of restoring brain function, while 44.2 do not know. In comparison to turkey, 16.2% believe that it might restore and this is affecting their decision [4] and 45.4% in the United States [2]. The cessation of some brain functions, without the brain stem being affected, with the opportunity to recover its normal functions.…”

“…Organ donation is defined as the process of removing an organ or tissue surgically from one person (the organ donor) and placing it into another person (the recipient) [1]. It has become a successful worldwide treatment for many illnesses and sometimes a cure [2].More than 150 children die annually while awaiting organ transplantation in the United States and Europe [3]. The worldwide demand for organ transplantation outnumbers the number of organs available [4].…”

“…Pediatric donation is still a little-discussed topic in academic circles and in the media around the world [3].Understanding factors that influence parental decisions has been demonstrated to improve both the success rate of gaining consent and the number of organs actually retrieved [1,2,3].…”

Crowdsourcing in pediatric transplant studies—An opportunity for reflection on research ethics

“…In this issue of Pediatric Transplantation , Jones and colleagues publish a study on organ donation willingness, where they use crowdsourcing to help determine why Black and Hispanic parents may be less willing to agree to donate their children's organs after a diagnosis of brain death . The findings of this study are relevant and important.…”