Visual AbstractAbstract

Background and objectives In 2019, two Canadian provinces became the first jurisdictions in North America to pass deemed consent legislation to increase deceased organ donation and transplantation rates. We sought to explore the perspectives of the deemed consent legislation for organ donation in Canada from the viewpoint of individuals commenting on press articles.

Design, setting, participants, & measurements In this qualitative descriptive study, we extracted public comments regarding deemed consent from online articles published by four major Canadian news outlets between January 2019 and July 2020. A total of 4357 comments were extracted from 35 eligible news articles. Comments were independently analyzed by two research team members using a conventional content analysis approach.

Results Commenters’ perceptions of the deemed consent legislation for organ donation in Canada predominantly fit within three organizational groups: perceived positive implications of the bills, perceived negative implications of the bills, and key considerations. Three themes emerged within each group that summarized perspectives of the proposed legislation. Themes regarding the perceived positive implications of the bills included majority rules, societal effect, and prioritizing donation. Themes regarding the perceived negative implications of the bills were a right to choose, the potential for abuse and errors, and a possible slippery slope. Improving government transparency and communication, clarifying questions and addressing concerns, and providing evidence for the bills were identified as key considerations.

Conclusions If deemed consent legislation is meant to increase organ donation and transplantation, addressing public concerns will be important to ensure successful implementation.

Introduction

For people with kidney failure, kidney transplantation is associated with improved patient and graft survival (1,2), better quality of life, and lower health care costs compared with maintenance dialysis (2⇓–4). The need for organ transplantation outpaces availability, resulting in a need to increase the number of donors. The deceased organ donor rate in Canada is 19 donors per million population, which is lower than in other high-income countries (e.g., the United States, Australia, Iceland, and the United Kingdom all have higher deceased donation rates despite having similar opt-in organ donation systems) (5,6). Only 20% of the Canadian population is registered as an organ donor, despite approximately 90% reporting that they support organ and tissue donation (7).

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 (8). 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.

In 2019, two Canadian provinces (Nova Scotia and Alberta) became the first jurisdictions in North America to pass deemed consent legislation to increase deceased donor organ transplantation rates. In Nova Scotia, the deemed consent bill passed in April 2019, and the law was implemented on January 18, 2021. The law does not apply to those who are under 19 years of age, who do not have decision-making capacity, who have lived in Nova Scotia for <12 months, who are members of the Royal Canadian Mountie Police or Military and are posted in Nova Scotia, and who are in prison (9). In Alberta, the deemed consent act (Bill 205) passed its first reading in November 2019, with final approval expected in 2022.

Although some countries have noted an increase in transplantation rates after adopting deemed consent legislation, others have not (10). One explanation for this may be different degrees of public trust and support (8,11). In Chile, the number of organ donations hit a 15-year low after implementing deemed consent legislation (11,12). This was felt to stem from public distrust in the health care system, which resulted in an increase in next of kin refusal and a high percentage of nondonors in the registry (11). Brazil abolished their deemed consent legislation as it was highly criticized and there was a lack of infrastructure to support it (13). A recent study reported that countries with an opt-out system also had lower rates of living donor transplants, with no significant difference in deceased donor transplant rates (5).

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 (14). Thus, we explored the perspectives of the deemed consent legislation for organ donation in Canada from the viewpoint of individuals commenting on press articles.

Materials and MethodsSetting/Study Design

We conducted a qualitative descriptive study of public comments from online news articles from national mainstream media outlets between January 2019 and July 2020. We leveraged qualitative description as our methodologic approach as we focused on descriptions of the phenomena (15). We focused on textual comments to avoid resources needed to transcribe audio or video sources for analysis. Because the comments are publicly available online, ethics approval was waived by the Conjoint Health Research Ethics Board at the University of Calgary. We followed the Standards for Reporting Qualitative Research (Supplemental Table 1) (16).

Data Source/Population

We searched four major Canadian national news outlets that allow for public commenting (the Canadian Broadcasting Corporation [CBC] News, Global News, The Globe and Mail, and HuffPost Canada). Other leading national and provincial news outlets were considered but not included in our search as either they did not allow for public commenting or the comments were no longer available at the time of data extraction. These included articles from the National Post, the Toronto Star, CTV News, the Calgary Herald, the Edmonton Journal, and Halifax Today. Three separate searches were done on each news outlet search engine using the following keywords: “presumed consent,” “opt-in organ,” and “opt-out organ.”

Articles identified from the search that were published online and written in English were considered for inclusion. D.E.F. screened the title and summary of the articles and excluded articles that (1) had no comments (i.e., comments were not enabled, or they had no comments posted) or (2) did not focus primarily on deemed consent. A full-text review was conducted independently by C.C. and D.E.F. following the same eligibility criteria. C.C. and D.E.F. then independently extracted article characteristics, including the article type (e.g., article or opinion piece), tone (e.g., for or against the deemed consent bills), and perspectives presented (e.g., medical experts or political figures). Disagreement was resolved by consensus and a third reviewer (N.N.L.) when necessary.

Data Analyses

Primary comments and subcomments (i.e., a response to a primary comment) linked to the articles were extracted and imported into NVivo qualitative data analysis software (QSR International Pty Ltd. Version 12 2018). A file was created for each news article, and each comment was treated as the unit of analysis. Usernames remained connected to each comment and file until the time of manuscript preparation to ensure that each theme represented a range of commenters across articles. Usernames were removed prior to publication to protect anonymity. An inductive conventional content analysis (i.e., coding and grouping similar concepts and developing themes) was used to analyze the data (17).

C.C., M.D., D.E.F., and N.N.L. familiarized themselves with the data by reading through and discussing the comments within each file. We identified three topics that were predominantly brought forth and discussed by commenters across news articles. We used these three topics as organizational groups for initial coding. C.C. and D.E.F. independently read each comment to ensure that it was relevant to the research question and coded it into an organizational group. The coded data were then reviewed by C.C., M.D., D.E.F., and N.N.L., who reflected on similarities and differences within the codes and came to consensus on preliminary subthemes. C.C. and D.E.F. coded the data into the identified subthemes. Subthemes were grouped together on the basis of similarities in content until distinct themes were formed. The final themes were agreed upon by C.C., M.D., D.E.F., and N.N.L. through iterative rounds of data reduction, discussion, and analysis. The original comments were rereviewed to ensure that our final themes portrayed the original data. Despite being limited by the number of comments available, we were able to reach a point of data saturation, wherein no new codes of themes occurred in the data.

C.C., M.D., and D.E.F. had methodologic expertise and prior experience conducting qualitative descriptive studies and inductive content analysis. M.D. had methodologic expertise in conducting internet-based research, and C.C., M.D., D.E.F., and N.N.L. had clinical or lived experience with organ donation. Throughout the study, each author reflected on how their unique positionalities may be influencing the research process. All four authors believed in identifying solutions to increase organ availability.

Results

We identified 180 online news articles, 35 of which were eligible for inclusion (Figure 1). Most articles were published from CBC News (n=19), had a tone that was in favor of the deemed consent legislation (n=19), and incorporated a variety of perspectives, including scientific and medical experts, government officials, and personal experience (Supplemental Table 2). A total of 4357 comments were extracted for data analysis, including 1168 primary comments and 3189 subcomments.

Figure 1.

News article selection flow diagram. CBC, Canadian Broadcasting Corporation.

We found that the perception of the deemed consent legislation for organ donation in Canada (for or against) predominantly fit within three organizational groups: perceived positive implications of the bills, perceived negative implications of the bills, and key considerations. Three themes emerged within each group that summarized commenters’ perspectives of the proposed legislation (Figure 2). Illustrative quotations for each theme are provided in Table 1. Commenters who expressed a specific stance appeared to be either for or against the bill, with few commenters expressing neutral views. Regardless of the commenter’s current stance on the legislation, key considerations were identified by those with both positive and negative perceptions of the bill.

Figure 2.

Perceptions of deemed consent for organ donation in Canada.

Perceived Positive Implications of the BillsMajority Rules.

Many commenters remarked that there was no violation of rights with deemed consent legislation, as Canadians still had a choice. These commenters highlighted that deemed consent legislation aligned with the views of the majority of Canadians, and as such, they viewed it as the most appropriate solution in a democratic country.

Societal Effect.

Many felt that deemed consent legislation would lead to an increase in organ donation, which would have both individual- and societal-level effects. These included lifesaving benefits and reduced health care–related costs (e.g., dialysis costs).

Prioritizing Donation.

Many commenters stated that deemed consent legislation has increased organ donation rates in other countries, and it was a progressive solution to an outdated process. Deemed consent legislation was discussed as an effective, simple, and efficient process with less paperwork for the majority, which would create better awareness for organ donation and encourage people to make a conscious decision on whether they wanted to be a donor. The legislation was also discussed as having the potential to optimize organ availability from those who had neutral views yet had not taken the time to opt in.

Perceived Negative Implications of the BillsA Right to Choose.

Many described organ donation as a gift, and this altruistic act should be their choice, not something that was assumed or decided for them. They indicated that the government should not have any role in making opt-out decisions on behalf of an individual as this was an abuse of power that violated their rights and freedoms. Some commenters who had opted in for organ donation felt so strongly about this violation of their rights that they would opt out if the bills passed.

Potential for Abuse and Errors.

Many commenters suggested that the bills were too ambiguous. This ambiguity combined with health system and government distrust could lead to errors and the potential for abuse. For example, health care providers might procure organs in those who had not yet opted out but wanted to, people may be kept on life support longer than necessary or taken off too early, and system errors might lead to deemed consent wishes not being respected. Many commenters indicated that these violations would inequitably affect specific populations, including those without next of kin or those who may not have the capacity or ability to register an opt-out decision.

Possible Slippery Slope.

Many commenters expressed concern about the future implications of supporting deemed consent legislation. They spoke of how the bills could be a slippery slope that might lead to unintended consequences (e.g., monetization of the organ trade) or further violations of peoples’ rights in the future (e.g., applying the presumed consent concept to other areas).

Key ConsiderationsTransparency and Communication.

Commenters wrote that there was a lack of transparency and communication around the deemed consent bills and the process to register a decision. It was unclear to commenters if these details were unknown or known but not being conveyed by lawmakers. The perceived lack of communication from lawmakers about the bills often led commenters to express uncertainty and mistrust. Thus, commenters called for greater transparency and more effective communication.

Process Clarification.

There were numerous unanswered questions and concerns about both the bills and the transplantation process that needed to be clarified and addressed. As many concerns appeared to stem from mistrust, information was also needed on what processes would be in place to protect against common concerns.

Evidence for the Bills.

Many commenters questioned whether deemed consent legislation was the most evidence-based solution to improve organ donation rates in Canada. They were unsure if deemed consent legislation would truly affect organ donation rates and challenged whether it was the best use of limited resources. For example, some commenters wrote that the legislation would not change donation rates as next of kin would continue to make the final decision. Many commenters brought forth considerations for additional interventions (e.g., mandated choice at the time of driver’s license renewal or tax completion or use of financial compensation). However, commenters also identified that these interventions came with their own challenges.

Discussion

We performed a qualitative descriptive study analyzing 4357 comments from online news articles covering the deemed consent legislation for organ donation in two Canadian provinces. Many commenters spoke of the perceived positive implications of the bills, and they remarked on how they aligned with the views of the majority of Canadians and had individual and societal benefits. Other commenters noted the perceived negative implications of the bills and how it could lead to a violation of rights or to abuse and errors. Regardless of how commenters perceived these implications, many called on lawmakers to address key issues and concerns.

The perceived positive implications of implementing deemed consent legislation in Canada suggest that deemed consent policies may have utility in the Canadian context. However, the intricacies behind deemed consent span beyond a simple decision to opt in or opt out (8,18,19). Commenters in our study raised complex issues and ethical concerns that hindered public trust for this legislation. This included concerns that the legislation threatened informed consent, individual rights, and autonomy; the need for self-protection as a result of mistrust; emotional discomfort, including fears that bodily integrity and rights might not be respected; and the ethical implications to both individuals and family members as their roles may shift with the changing legislation (20⇓⇓⇓–24).

Deemed consent legislation alone does not guarantee an increase in organ transplantation. Indeed, donation rates in many countries that have implemented deemed consent have been shown to be primarily influenced by other factors (e.g., health care expenditures) (10,19). As such, joint strategies, appropriate infrastructure, and public trust are needed to overcome the various obstacles to organ donation (5,8,10,18,20,25). Lawmakers should focus on better understanding the diverse views and needs of the public and aim to build collective trust around organ donation. Multifaceted interventions and infrastructure should then be codesigned in partnership with community stakeholders, work that is already in progress in Canada (26).

We identified several unanswered process- and system-level questions that commenters posed that may affect public support for deemed consent legislation in Canada (Table 2). In a qualitative synthesis exploring factors that influence the decision to be an organ donor, Irving et al. (27) described a process in which tensions in decision making exist and how an individual weighing positive and negative influencing factors tipped the scale to a certain view. Addressing the key issues identified in our study may be an important first step in increasing public trust and support.

Table 2.

Concerns to address

Opportunities to explore insight on public perceptions can be costly and time consuming, and they are often not feasible (28⇓–30). The content of news media online discussion boards presents a rich source of qualitative data that enable an understanding of how individuals think about and frame a topic of concern as they discuss, debate, and contribute their insights and opinions on public issues (28,31,32). These forums provide an opportunity for researchers to gain insights into a range of opinions and views about sensitive public issues in unobtrusive and unsolicited ways (29,32⇓–34). They also facilitate capturing perspectives from a large number of individuals in real time and have been shown to elicit similar findings to more traditional research methods (e.g., systematic reviews and focus groups) (30,35). Our findings may support further research from other sources (e.g., larger social media sources, in-person focus groups, and interviews) to explore this topic in greater depth.

Our study has limitations worth noting. Concerns about the validity of using public comments as research data have been raised. For example, the anonymity of participants can result in higher degrees of incivility (e.g., verbal attacks and trolling) and concerns with clickbait, and bot responses may bias our understanding of public issues (32,34⇓–36). We were unable to determine the number of unique individuals who contributed to our data given that individuals could have created multiple accounts. We were also unable to collect demographic data to compare the views of different individuals. As such, we were not able to represent the breadth of perspectives and views of all Canadians. We further recognize that the article content likely framed the comments and discussion and that the number of comments generated from each news article in our study varied (37). Despite the majority of articles having a pro deemed consent or neutral tone, we found that the themes identified were consistent across articles. The variability of the number of comments generated was similar to other topics of public interest. For example, an analysis article posted to CBC News about mandating the coronavirus disease 2019 vaccine for health care workers generated over 2000 comments, wherein an article discussing the removal of vaccine mandates in Newfoundland and Labrador generated 45 comments (38,39). We also recognize that we were not able to include all available news articles on the topic. For example, the National Post, which is known to have a more conservative readership, posted eight articles on deemed consent but did not have comments available for inclusion in our study. These sources may have generated different types of comments and discussion.

Public perceptions of deemed consent legislation for organ donation in Canada are influenced by the perceived positive and negative implications of the legislation and key considerations. If deemed consent legislation is meant to increase organ donation and transplantation, building public trust is an important first step for its successful adoption. Lawmakers should consider these considerations and address commenters' questions and concerns with multifaceted strategies.

Disclosures

M. Donald reports consultancy agreements with The Center for Implementation. M.J. Elliott reports serving as an associate editor for Canadian Journal of Kidney Health and Disease. R.R. Quinn reports consultancy agreements with Baxter Corporation; research funding from the International Society of Peritoneal Dialysis (ISPD) Peritoneal Dialysis (PD) Catheter Registry (with Baxter partially funding the project); honoraria from Baxter (PD University) and the Baxter Advisory Board; and a Canadian patent for the Dialysis Measurement, Analysis, and Reporting System. All remaining authors have nothing to disclose.

Acknowledgments

The authors are grateful to Sarah Gil for designing Figure 2.

Author Contributions

D.E. Fox, N.N. Lam, and R.R. Quinn conceptualized the study; D.E. Fox and N.N. Lam were responsible for data curation; C. Chong, M. Donald, M.J. Elliott, D.E. Fox, N.N. Lam, R.R. Quinn, and P.E. Ronksley were responsible for investigation; C. Chong, M. Donald, D.E. Fox, and N.N. Lam were responsible for formal analysis; C. Chong, M. Donald, M.J. Elliott, D.E. Fox, N.N. Lam, R.R. Quinn, and P.E. Ronksley were responsible for methodology; D.E. Fox was responsible for project administration; N.N. Lam was responsible for resources; N.N. Lam provided supervision; D.E. Fox and N.N. Lam wrote the original draft; and C. Chong, M. Donald, M.J. Elliott, D.E. Fox, N.N. Lam, R.R. Quinn, and P.E. Ronksley reviewed and edited the manuscript.

Footnotes

Published online ahead of print. Publication date available at www.cjasn.org.

See related Patient Voice, “Media Analysis of the Canadian Deemed Consent Policy: Valuable Insights?,” and editorial, “Understanding Public Perspectives on Opt-Out Deceased Donor Transplant Policy: Ethically Obligatory and Practically Necessary,” on pages 1575–1576 and 1577–1579, respectively.

Received April 11, 2022.Accepted September 16, 2022.Copyright © 2022 by the American Society of Nephrology