Some Canadians call for transparency from policymakers about organ donation legislation
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Following the deemed consent legislation for organ donations passed in some providences of Canada, researchers explored public opinion and found a call for transparency and communication from the government.
“Historically, Canada has had an opt-in organ donation system, wherein individuals register to donate premortem. In practice, however, it is the deceased individual’s family that is approached and authorizes a donation decision. One strategy to increase the availability of organs is deemed consent legislation, where adults are automatically presumed to consent to organ donation upon their death unless they registered an opt-out decision,” Danielle E. Fox, a PhD student at The University of Calgary in Canada, and colleagues wrote. They added, “The potential effect of deemed consent legislation must be carefully considered in Canada as the legislation alone is unlikely to be effective without support from the public.”
In 2019, Nova Scotia and Alberta became the first two providences in Canada to introduce deemed consent legislation for organ donations. Therefore, all members of the providences would be automatically signed up as organ donors, unless they opt out.
In a qualitative descriptive study, researchers examined the comments left on online press articles about the legislation to determine public opinion on topic. Researchers identified 45 news articles published by the Canadian Broadcasting Corporation News (n=19), Global News (n=8), The Globe and Mail (n=5) or HuffPost Canada (n=3) between January 2019 and July 2020 that were eligible for the study.
From the 35 articles, researchers used conventional content analysis to independently analyze 4,357 comments.
Researchers categorized commenters’ perceptions of the legislation as the following: perceived positive implications of the bills, perceived negative implications of the bills and key considerations. After further analysis, researchers observed three common themes that appeared in each group. For example, themes from the perceived positive implications group included majority rules, societal effect and prioritizing donation. Similarly, themes from the perceived negative implications of the bills were a right to choose, the potential for abuse and errors, and a possible slippery slope, meaning the potential implications of supporting the legislation. The three themes of key considerations included transparency and communication, process clarification and evidence for the bills.
In an accompanying editorial, Catherine R. Butler, MD, MA, from the division of nephrology in the department of medicine at University of Washington in Seattle, wrote, “Ethical analysis in isolation may help us to grapple with whether it is more important to save lives through increased access to transplant vs. respect individual autonomy of those who prefer not to participate in deceased donation but have not registered a refusal. In contrast, empirical research into public perspectives and needs holds the potential of directly addressing and minimizing the tension between these two priorities by identifying ways to improve transparency and education around the consent process and implementing accessible systems that make it easier to register refusal for those who prefer to opt out.”
Butler concluded, “Understanding public values beyond a simple preference for opt in or opt out offers opportunities to develop a more ethical and effective system of deceased donation.”
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