Abstract
There is a paucity of research pertaining to the discourse-based construction of legitimation within the realms of law and healthcare. To fill this gap, the present study examines the deliberations within the Legislative Council of Hong Kong pertaining to the enactment of legislation recognizing rare diseases (RDs) as eligible for governmental support. Employing van Leeuwen’s sociosemantic approach, we analyzed the debates, revealing four distinct discursive strategies, namely rationalization, morality, authorization, and mythopoesis, employed by the legislators to advocate for RD legislation. Among these strategies, rationalization emerged as the most frequently employed. The legislators’ discourse carries ideological implications concerning humanitarianism. This study not only sheds light on the utilization of legitimation strategies to advocate for the enactment of social policies within a legal context but also provides valuable insights for other regions seeking to advance RD legislation from a linguistic perspective.
Plain language summary
There is a paucity of research pertaining to the discourse-based construction of legitimation within the realms of law and healthcare. To fill this gap, the present study examines the deliberations within the Legislative Council of Hong Kong pertaining to the enactment of legislation recognizing rare diseases (RDs) as eligible for governmental support. Employing van Leeuwen’s sociosemantic approach, we analyzed the debates, revealing four distinct discursive strategies, namely rationalization, morality, authorization, and mythopoesis, employed by the legislators to advocate for RD legislation. Among these strategies, rationalization emerged as the most frequently employed. The legislators’ discourse carries ideological implications concerning humanitarianism. This study not only sheds light on the utilization of legitimation strategies to advocate for the enactment of social policies within a legal context but also provides valuable insights for other regions seeking to advance RD legislation from a linguistic perspective. The study’s limitation is that it focuses only on the LegCo Hansard within the Hong Kong context, and future research could explore the challenges associated with implementing the Uncommon Disorders Registry and its potential impact on individuals with RDs in Hong Kong. Moreover, we recommend future research in other countries/regions to advance the knowledge and development of global RD policies.
Keywords
Introduction
Rare diseases (RDs) are conditions that affect a relatively small population with a very low prevalence rate (Rare Disease Hong Kong, n.d.). According to Richter et al. (2015), there is currently no universally accepted definition of RDs and they identified 296 definitions from 1,109 organizations worldwide. In Hong Kong, patients with RDs face various challenges, including but not limited to a lengthy diagnostic process, limited expertise among healthcare professionals, restricted availability and high costs of medications, and a medical system that overlooks diversity (Rare Disease Hong Kong, n.d.).
RD patients in Hong Kong can only receive medical care on an “equal” basis with the majority of non-RD patients, as the healthcare system in Hong Kong prioritizes cost-effectiveness and equality (Chiu et al., 2018). Consequently, the specific needs of RD patients are often disregarded. Recognizing these issues, the Legislative Council of Hong Kong (LegCo) urged the government in 2019 to enact legislation regarding RDs, aiming to safeguard and enhance the rights of RD patients and ensure their access to appropriate diagnosis, care, and treatment (Legislative Council, 2019). However, there is limited research examining how the legislators, who are representatives elected by the people in the LegCo, sought to legitimize the proposal for enacting legislation that recognizes RDs as qualifying for financial support from the Government.
The objectives of the present study are to examine the discursive strategies and linguistic mechanisms employed by legislators when justifying the proposal “Enacting Legislation to Protect the Rights and Interests of Rare Disease Patients” (Legislative Council, 2019, p. 5801) in the Legislative Council of Hong Kong. This investigation also seeks to uncover the ideological implications that underlie their discourse, as the legislators’ language may exert a significant influence on social structure and practices. In this context, a discursive strategy refers to “a more or less intentional plan of practices (including discursive practices), adopted in order to achieve a particular social, political, psychological, or linguistic goal. Discursive strategies are located at different levels of linguistic organization and complexity” (Wodak, 2015, p. 289). There is a paucity of research investigating the discursive construction of legitimation within the spheres of law and healthcare. Consequently, this study aims to address this research gap by addressing the following inquiries:
What discursive strategies did the legislators employ to legitimize the motion advocating the enactment of legislation to acknowledge RDs as conditions that merit support from the Hong Kong Government?
What ideological implications are embedded within the legislators’ discourse?
The necessity to address this research gap, particularly the scarcity of studies analyzing the discursive construction of legitimation within the legal and healthcare context, provides a justification for undertaking this study. The study illuminates the legitimation strategies employed in shaping the discourse surrounding RDs within the context of the LegCo, thereby facilitating a deeper comprehension of the power dynamics and rhetorical justifications within this significant domain. This study contributes to our comprehension of RDs in Hong Kong by addressing the research inquiries. Primarily, it demonstrates the various forms of argumentation employed in the legislative process, thereby revealing the discursive strategies utilized by legislators to validate the proposal for recognizing RDs as eligible for government assistance. Moreover, this study delves into the ideological implications embedded within the legislators’ discourse, facilitating a more profound understanding of the fundamental principles and convictions that shape their viewpoints. By shedding light on the ideological dimensions of the discussions, this investigation enhances our understanding of the sociopolitical context surrounding RDs in Hong Kong. Furthermore, it aids in clarifying the intricacies and challenges associated with formulating and implementing policies pertaining to RDs.
Literature Review
There have been several studies that have investigated the legislation pertaining to the support of patients with RDs. For instance, in order to assess how the needs of RD patients could be addressed in Canada, Harris (2018) analyzed three pharmaceutical business incentives implemented as a response to legislation aimed at fostering the development and accessibility of treatments for RDs. It was determined that the introduction of these incentives in the country was recommended, as market exclusivity had effectively stimulated investment in orphan drugs. Shifting our focus to Asia, Shafie et al. (2016) employed the World Health Organization’s framework for action to conduct interviews with key stakeholders in six countries. Their findings revealed that the management of RDs remains challenging, with many nations grappling with difficulties ranging from RD-related legislation and funding to fundamental healthcare systems. Turning our attention to China, Wang et al. (2019) scrutinized China’s new Drug Administration Law and ascertained that the legislation stipulates that innovative treatments for conditions such as RDs receive priority evaluation and approval. Furthermore, it supports the domestic production and development of new drugs for RDs, thereby establishing a robust legal basis for the provision of medications to treat RDs in accordance with the Healthy China Strategy.
Concerning Hong Kong, the medical system lacks a comprehensive policy addressing RDs. Individuals afflicted with RDs are commonly regarded as typical patients and are solely provided with treatments aimed at alleviating observable clinical symptoms and discomfort. In terms of its welfare system, Hong Kong shares numerous similarities with its regional counterparts, such as limited government expenditure on welfare, an emphasis on self-reliance and informal caregiving within families, an ideological rejection of welfare as a social entitlement, and a prioritization of economic advancement (Lee, 2005). Given the relatively small proportion of the affected population, the government has not yet prioritized the formulation of comprehensive policies in this regard. In light of this, Rare Disease Hong Kong, a local non-governmental organization, has advocated for the adoption of an official definition of RDs in Hong Kong. This would enable patients diagnosed with the specified RDs to receive affordable specialized medications and benefit from statutory or private funding programs (Rare Disease Hong Kong, 2021).
However, in order to avoid incurring legal obligations, the Government commonly employs the term “uncommon disorder” to refer to RDs. For instance, in the most recent policy address delivered by the Chief Executive, the Hospital Authority announced its intention to establish the Uncommon Disorders Registry and establish a national network with its counterparts in mainland China (The Hong Kong Government, 2022). Nevertheless, no further actions or proposals have been put forth, indicating the challenges associated with developing policies that address RDs in a society that is not oriented toward welfare. This article demonstrates that despite the Government’s ongoing postponement of RD legislation, legislators have urged the administration to formulate policies related to this issue. The discursive strategies employed by the legislators in the debates and discussions are underscored.
Discourse analysis has been utilized to a limited extent in examining RDs. One notable research endeavor in this field is the study conducted by Hernández (2007), which employed critical discourse analysis (CDA) to investigate leaflets, media sources, and patient publications in Spain. The investigation revealed the presence of discursive manipulation concerning several fundamental aspects of diseases, as well as the portrayal of patient groups. Despite the valuable insights garnered from this study, scant attention has been directed toward the legislative aspects pertaining to RDs within the Hong Kong context.
Consequently, the current study aims to explore the discursive strategies employed by members of the LegCo to endorse the passage of legislation aimed at safeguarding the rights and interests of individuals affected by RDs. An examination of the discursive construction of legitimation is of utmost importance, as it carries the potential to exert a significant impact on both social structures and practices. To this end, the present investigation adopts CDA, analyzing the legitimation strategies employed in support of the motion as documented in the official record of proceedings from 2019. This critical approach has been widely employed to scrutinize diverse social and political contexts, encompassing healthcare discourses, with the aim of uncovering power dynamics, ideological manipulation, and the employment of discursive strategies by various stakeholders (Ali Alqaysi & Mehar Singh, 2022).
Previous research indicates that the discursive construction of legitimation can be achieved through various discourses, including immigration control, sex education, and socio-political discourses. In this context, legitimation is defined as “reasons that either the whole of a social practice or some part of it must take place, or must take place in the way that it does” (van Leeuwen, 2008, p. 20). For instance, van Leeuwen and Wodak (1999) observed that Austrian immigration authorities employed diverse forms of legitimation strategies to justify their decisions to reject family reunion applications. Likewise, Liang and Bowcher (2019) discovered that multiple legitimation strategies were employed to establish the validity of sex education in children’s picture books in China. Similarly, Sadeghi et al. (2014) demonstrated how Voice of America and Fars News adopted different strategies to validate the Egyptian revolution while delegitimizing Mubarak’s regime. Ho (2022) also examined the strategies of (de)legitimation utilized by online participants when discussing individuals who departed from Wuhan prior to the implementation of the lockdown during the pandemic.
While these studies have presented intriguing insights, there is a lack of research examining the discursive construction of legitimation within the realms of law and healthcare. To illustrate, a notable event took place when Rare Disease Hong Kong organized a prominent public forum, during which they engaged in discussions with representatives from the Hospital Authority on December 1st, 2023. The organization employed discursive strategies of legitimation in order to compose a Facebook post pertaining to the forum, specifically addressing the issue of patients’ payment for exceedingly costly drugs used to treat RDs. 1 The employment of legitimation strategies by Rare Disease Hong Kong has served to advocate for patients’ accessibility to these expensive medications. The subsequent section will explicate the specific legitimation strategies employed.
Methodology
Data Collection
The LegCo Hansard, which serves as the official verbatim transcript of debates and discussions, was chosen for data analysis due to its status as the foremost formal debate concerning the legalization of support for patients with RDs within the social policy framework in the context of the LegCo in recent years. The specific portion extracted for analysis was the motion titled “Enacting Legislation to Protect the Rights and Interests of Rare Disease Patients” (91,633 words), initiated by Dr Hon Fernando Cheung on January 24th, 2019 (Legislative Council, 2019, p. 5801). The selection of this particular motion and date holds significance as they represent the primary formal debate on legalizing support for RD patients within the LegCo’s social policy system in recent times. Consequently, this motion and date hold importance in comprehending the political perspectives of legislators regarding RD policy. It is worth noting that this motion did not result in any legislative impact but conferred upon legislators the right to urge the Government to take action. The legislators’ viewpoints on RD policy were unveiled through the debates and discussions surrounding this motion.
The analysis and presentation data were sourced from the official website of the LegCo, which provides content in both Chinese and English languages. The English version was chosen for analysis and presentation purposes, as English holds the status of one of Hong Kong’s official languages. Therefore, employing the English translation of the LegCo Hansard for analysis adheres to the region’s practices of information accessibility and linguistic norms. However, it is essential to acknowledge that the translated English version may not fully capture all cultural references, nuances, and unique linguistic expressions present in the original Chinese discourse. Consequently, this may result in the loss of certain contextual cues or subtle meanings. Nonetheless, the language choice does not impede the analysis of our research questions concerning the discursive strategies employed by legislators to justify the motion advocating the enactment of legislation to recognize RDs as conditions deserving support from the Hong Kong Government and their ideological implications. According to Ho (2022), acquiring contributors’ informed consent is not a requisite when employing publicly accessible online data for research objectives.
Analytical Framework and Procedures
Data analysis was conducted employing van Leeuwen’s (2008) sociosemantic approach to legitimation strategies. van Leeuwen (2008) defines discourse as the “recontextualization of social practice,” which can be expressed through linguistic means as well as other semiotic modes (p. 3). Rather than emphasizing linguistic concepts such as “nominalization,” this approach primarily centers around sociological categories like “nomination.”van Leeuwen (2008) argues that the development of these sociological categories is essential due to the incongruity between sociological and linguistic classifications. His primary concern is that if CDA becomes overly reliant on specific linguistic operations or categories when investigating an agency, numerous significant instances of the agency may go unnoticed.
To address the first research question, van Leeuwen’s (2008) sociosemantic approach, specifically his framework of legitimation strategies, proves particularly valuable as it facilitates the analysis of the discursive strategies employed by the legislators to justify the proposition “Enacting Legislation to Protect the Rights and Interests of Rare Disease Patients” (Legislative Council, 2019, p. 5801). In tackling the second research question, employing this framework enables the exploration of the ideological implications surrounding the motion within the broader context of discourse and sociocultural factors. The sociosemantic approach encompasses four fundamental sociosemantic categories: authorization, morality, mythopoesis, and rationalization. van Leeuwen (2008) succinctly provides an overview or definition of these four core sociosemantic categories as follows:
(1) Authorization, that is, legitimation by reference to the authority of tradition, custom, law, and/or persons in whom institutional authority of some kind is vested.
(2) Moral evaluation, that is, legitimation by (often very oblique) reference to value systems.
(3) Rationalization, that is, legitimation by reference to the goals and uses of institutionalized social action and to the knowledges that society has constructed to endow them with cognitive validity.
(4) Mythopoesis, that is, legitimation conveyed through narratives whose outcomes reward legitimate actions and punish nonlegitimate actions (pp. 105–106).
The analysis at the semantic level was conducted using the Nvivo 12 Pro software. The process of constructing meaning and the linguistic realization, specifically the length of each coding, were not predetermined. In essence, the sociosemantic approach, with its hermeneutic nature, enables a contextual and adaptable interpretation of meaning. This stands in contrast to a rigid compilation of linguistic realizations (such as lexis, grammar, and rhetorical devices) assigned to each sociosemantic category (Yu, 2022, p. 718). Consequently, the length of annotations varied depending on the boundaries of individual messages, ranging from single sentences to entire paragraphs. This methodology facilitated a more nuanced analysis, illuminating the diverse ways in which meaning was constructed within each communication. It acknowledged the fluidity and interpretive essence of discourse.
Drawing upon van Leeuwen’s (2008) conceptual framework and considering the actual frequency of the categories observed in the dataset, the coding framework underwent adjustments (see Figure 1). Measures were taken to avoid duplicate coding, and the length of each coding instance was primarily determined by the commencement and conclusion of each message. To ensure consistency in the coding process, inter-rater reliability testing was conducted. Initially, the two authors independently coded a randomly selected 30% of the data, and subsequently, Nvivo 12 software automatically generated the Kappa Coefficient test result (0.88). This result indicates a near-perfect level of agreement (Cohen, 1960). Discrepancies were subsequently addressed through deliberation between the two authors until a consensus was reached. Throughout these discussions, meticulous scrutiny and analysis of the contentious aspects were undertaken, taking into consideration the specific context and content of the data. In order to enhance the overall validity and reliability of the analysis, it was crucial to ensure that the final coding scheme accurately captured the nuanced aspects of the data and effectively represented the intended meaning. Thereafter, the remaining analysis was conducted exclusively by the first author. The following illustration depicts the procedural steps involved in the analytical process: Legislator Elizabeth Quat: Without a policy and a definition, we will be unable to nurture and train better healthcare personnel, unable to have a database, big data, and unable to accomplish a series of tasks in the future.
The legislator relied on theoretical rationalization. She argued that the Government should provide a definition and formulate policies in order to protect the interests and rights of individuals with RDs. Consequently, this entire passage was labelled as “theoretical” within the category of “rationalization.”
The sociosemantic approach to legitimation strategies.
Results
The findings indicate that legislators in the LegCo employed four discursive strategies (refer to Table 1) to legitimate the motion concerning the enactment of legislation to acknowledge RDs as qualifying for assistance from the Government and to safeguard the rights and interests of RD patients. These strategies encompass rationalization (188 occurrences; 60.5%), morality (61 occurrences; 19.6%), authorization (34 occurrences; 10.9%), and mythopoesis (28 occurrences; 9.0%). The outcomes not only provide an account of the frequency with which these strategies were employed by the legislators but also offer a qualitative analysis of their implementation, thereby facilitating a comprehensive understanding of the prevailing strategies for subsequent discussion. Moreover, the legislators’ discourse bears ideological implications in relation to humanitarian principles. The subsequent sections will individually expound upon these strategies.
Frequencies of the Legitimation Strategies.
Rationalization
The most often used strategy to justify the motion was rationalization (188 times; 60.5%). Under rationalization, there were two types, instrumental (51.6%; Examples 1 and 2) and theoretical (48.4 %; Example 3).
Legislator Chan Chun-Ying: After the diagnosis of rare disease patients is confirmed, they need to face another more significant problem:
Legislator Leung Yiu-Chung: The prices of drugs for rare diseases are
The first category, known as instrumental rationalization, is associated with beneficence and utilitarianism in relation to financial resources. Unlike medications developed for common diseases, recouping the costs of research and development from a small patient group is more challenging due to the limited production of these drugs. Consequently, drugs and treatments for RDs are considerably more expensive than those for common ailments (Panju & Bell, 2010). The legislators emphasized that the Government did not display excessive concern for RD drugs, as they were not widely used. Patients with RDs did not receive adequate attention under the existing system, even though the treasury was replete with funds. For instance, Legislator Chan Chun-Ying vividly highlighted the exorbitant cost of RD drugs and treatments, describing them as “astronomical” (Example 1). This metaphor effectively underscores the dire predicament faced by RD patients due to the exorbitant expenses associated with their medications. Similarly, Legislator Leung Yiu-Chung employed the phrase “waiting for death” to depict the helplessness experienced by individuals who lack the means to afford these drugs (Example 2). This phrase underscores the inaccessibility of drugs and treatments that are beyond their financial reach.
3. Legislator Joseph Lee: When a
The second category, known as theoretical rationalization, pertained to the fundamental definitions of RDs and the necessity of such definitions within the discourse. Currently, there is no accepted definition of RDs that universally applies. Various definitions consider different factors, including patient population size, availability of effective treatments, or the severity of the condition (Chiu et al., 2018). Despite the absence of an established meaning, the Hong Kong Government presently designates RDs as “uncommon disorders.” Although individually rare, Chiu et al. (2018) propose that there are approximately 5,000 to 8,000 distinct types of RDs globally, collectively affecting one in 15 individuals worldwide. Many RDs are attributed to genetic alterations or flaws. The age of onset for these conditions can vary from birth to old age, depending on the patient and the specific disease. The majority of RDs pose significant and enduring threats to patients’ well-being, with some even being potentially fatal. However, the government has yet to provide an official definition for RDs or formulate specific policies to support individuals afflicted by them.
The legislators consistently contended that the Government had failed to furnish definitions for various RDs and establish an RD database. Furthermore, it had neglected to devise formal policies to tackle the myriad challenges faced by individuals afflicted with RDs. Legislator Joseph Lee, for instance, accused the Government of evading accountability, resulting in its failure to provide definitions for different RDs (Example 3). Lee asserted that only by furnishing such definitions could the Government formulate policies and extend assistance to patients (Example 3). The legislators posited that these patients were not merely Hong Kong citizens but also taxpayers who had made contributions to society. Nevertheless, given Hong Kong’s non-welfare-oriented ethos, which accentuates self-reliance, the government may not perceive the provision of comprehensive support to RD patients as its primary obligation.
Morality
Morality was the second most commonly (61 instances; 19.6%) used strategy to justify the motion. To emphasize the significance of this motion, there were two forms of morality: abstraction (54.0%; Examples 4 and 5) and comparison (46.0%; Example 6 and 7).
4. Legislator Shiu Ka-Chun: In fact, it is quite a waste of effort to speak about
5. Legislator Leung Yiu-Chung: Everybody knows that on its website, the Hong Kong Hospital Authority (“HA”) pledges that it is a “
The legislators brought the desired values to prominence while condemning the undesired values. This was primarily achieved through the use of abstraction as part of a strategy rooted in morality. To bolster this proposition, emphasis was placed on human rights, which serve as moral guidelines for behavior. Legislator Shiu Ka-Chun, for instance, underscored the significance of human rights and the ethical principles endorsed by various regions, including the United Nations (Example 4). He asserted that medical care is an integral part of human rights and that everyone should have access to treatment regardless of the cost of drugs. Moreover, Legislator Leung Yiu-Chung, in Example 5, drew attention to the Hospital Authority’s and healthcare policy’s commitment to prioritizing people, a pledge that, in reality, did not align with the actual circumstances.
6. Legislator Fernando Cheung: Even if the treasury is
7. Legislator Cheng Chung-Tai: If we only keep talking about helping them and understanding their feelings but ignore the flaws in the system, we are basically committing “
In the context of the morality strategy, comparisons were employed to juxtapose Hong Kong with other countries/regions that have adopted varying definitions for RDs or to draw parallels between the situation in Hong Kong and other issues associated with negative values. Numerous nations and regions have already formulated policies pertaining to RDs; however, it is evident that Hong Kong is trailing behind in this domain, as neither a definition for RDs nor data concerning the number of RD patients and treatments have been established (Chiu et al., 2018). Absent these measures, addressing the issue with an appropriate response becomes a complex task. Hong Kong’s situation was recurrently contrasted with that of other regions, such as the United States (47 instances), Taiwan (24 instances), Australia (20 instances), Japan (14 instances), Korea (13 instances), and the European Union (9 instances). When compared to these regions, Hong Kong’s dearth of comprehensive legislation and established systems for individuals with RDs underscores the challenges faced by patients in accessing essential support and resources. For instance, in Example 6, Legislator Fernando Cheung highlighted that all the aforementioned regions had enacted laws and established systems for individuals with RDs while emphasizing Hong Kong’s affluent status through the metaphor of being “flooded” with wealth. However, Hong Kong has not taken any comparable actions. Legislator Cheng Chung-Tai even employed the term “indirect homicides” to illustrate the “flaws in the (local) system,” as certain patients were unable to be saved due to the absence of sound policies (Example 7). Although other East Asian regions may not be welfare states, they provide greater assistance to RD patients compared to Hong Kong. It is evident that Hong Kong is significantly lagging behind other jurisdictions in terms of related policies.
Authorization
Authorization was the third most frequently (34 instances; 10.9%) used strategy to justify the motion. This was mainly achieved through two ways: personal (73.5%; Example 8) and impersonal (26.5%; Examples 9–11) authorities.
8. Legislator Elizabeth Quat: The
Among the 25 instances of personal authority being invoked, the central figure of interest was the ex-Chief Executive, Carrie Lam, who was mentioned a total of 20 times. This approach signified that when an individual of high standing within the Government displayed personal concern for individuals with RDs, it underscored the necessity for legislative measures to acknowledge RDs as qualifying for financial assistance. Additionally, it highlighted the need to establish a comprehensive framework, rather than depending solely on the sympathy and endeavors of a single Chief Executive. This is crucial because successive Chief Executives after Carrie Lam may exhibit divergent attitudes (Example 8).
9. Legislator Andrew Wan: Regrettably,
10. Legislator Andrew Wan: But the Government has reserved so little money, only $500 million, for this purpose. This is the way our Government is. It is
11. Legislator Chiang Lai-Wan: What has happened to Hong Kong? Is the treasury of the Government empty? Does it go bankrupt? Not at all. I think when the patients are
When discussing impersonal authority, the arguments revolved around the general portrayal of the Hong Kong Government. Due to limited healthcare resources, the Government is compelled to adhere to a public finance philosophy that prioritizes medical cost-effectiveness (Chiu et al., 2018). This philosophy entails assessing the availability of substantial evidence demonstrating that the adoption of a new drug or treatment would enhance patients’ health and extend their lives before determining whether to provide subsidies. Its objective is to extend support to the largest number of individuals using the least amount of resources. 10. The legislators have criticized the Government using disparaging terms such as “deaf,”“sick,”“stingy,”“highly ruthless,” and “no longer be worthy of respect from the public” (Examples 9–11). The Government’s indifference toward individuals with RDs was underscored through comparisons. For instance, Example 10 juxtaposed the Government’s unresponsive attitude toward RD patients with its favorable treatment of costly projects that were operationally challenging and lacked profitability. Subsequently, the public’s reaction was characterized as “angry” and lacking respect toward the Government (Examples 10 and 11). The Government’s disregard for individuals with RDs can be attributed to Hong Kong’s political system, which lacks universal suffrage. The Chief Executive is appointed by an Electoral College comprising primarily of the business and social sectors. Since the Chief Executive faces limited electoral pressure, the Government may not be directly accountable to the general populace.
Mythopoesis
Mythopoesis was the last most frequently (28 instances; 9.0%) used strategy to legitimize the motion. This was mainly achieved through two kinds: cautionary (71.4%; Example 12) and moral (28.6%; Example 13) tales.
12. Legislator Fernando Cheung: Ms Chi, one of the attendees, said that she was indignant because even though she was only in her 20s, the tumors inside her body had grown so large that she looked as if she were pregnant. She said that she was indignant as she had been troubled by this disease during her 20-odd years of life.
Cautionary tales employ authentic accounts to depict the potential consequences if the government fails to enact legislation recognizing RDs as qualifying for financial assistance. Such negligence could result in distressing outcomes for numerous patients and their families. For instance, in illustrative Example 12, Legislator Fernando Cheung employed the genuine experience of Ms Chi to underscore his argument. Tragically, she succumbed to her condition as she lacked the financial means to procure the costly medical treatment that could have offered a cure. These poignant real-life narratives serve a purpose, particularly in capturing the attention of individuals whose lives have not been marred by similar tragedies. Psychologists refer to this phenomenon as identification, which entails the process or state of being identified (Tansey & Burke, 2013). Empathy, an intrinsic aspect and psychological attribute of human beings aids in achieving identification. Humans possess the capacity to envision the emotions experienced by the protagonists in distressing situations, while also recognizing how they themselves might feel under comparable circumstances. In other words, they can empathize with others, as melancholic experiences are an inherent aspect of the human condition, and humans, fundamentally, share commonalities. From an anthropological perspective, empathy fosters a sense of cohesion among the members of a community (Hollan & Throop, 2008). Consequently, sorrowful narratives serve to strengthen the sense of “belonging,” which constitutes an integral component of our social heritage and evolutionary legacy.
13. Legislator Chiang Lai-Wan: Two months ago, that child was diagnosed to be at stage four of Neuroblastoma which is a rare disease, and he needs to receive a special type of chemotherapy.
In contrast, moral tales employ real-life illustrations to demonstrate the potential outcomes if the Government were to accord social policy priority to RDs; such prioritization could lead to favorable outcomes for numerous patients and their families. For instance, in Example 13, Legislator Chiang Lai-Wan utilized the story of Ho-yan, an individual diagnosed with Neuroblastoma. The fortuitous aspect was that Ho-yan managed to receive costly medical treatment owing to generous donations from affluent individuals, which were raised through an online fundraising campaign. This incident bestowed upon the protagonist a range of positive attributes, including being “very fortunate” and fostering “hope of survival.” The aforementioned example exemplifies a moral tale imbued with optimism, promise, and motivation. Such narratives evoke a profound emotional response in the listener and foster a strong connection between the speaker and the audience. The primary objective of a moral tale is to elicit positive emotions in the listener, such as moments of inspiration and hope amidst seemingly dire circumstances. Given the recent emphasis by Chinese authorities on the values of “common prosperity” and the welfare of the underprivileged in society, it would be prudent for the Hong Kong Government to adopt the same principles in order to improve the treatment of RD patients (Chan & Yu, 2023).
Discussion
Based on the findings, our study has identified four key discursive strategies utilized by the legislators in the LegCo to justify the proposition advocating for the legalization of support for patients with RDs within the social policy framework. These strategies encompass rationalization, morality, authorization, and mythopoesis, and are associated with ideological implications, particularly in relation to humanitarianism.
Rationalization was the most frequent strategy employed by legislators in Hong Kong in their endeavor to endorse the recognition of RDs, with the aim of furnishing financial aid and safeguarding the rights of RD patients. Through instrumental rationalization, legislators underscored the pressing necessity for monetary assistance by highlighting the exorbitant costs of RD medications and their unaffordability for middle-class and lower-class households. This sentiment is echoed by Chung et al. (2023), who contend that it is imperative for stakeholders to incorporate the RD population into the blueprint for universal healthcare coverage, given the financial challenges associated with RDs in Hong Kong. Similarly, Pak Gure and İnce (2021) assert that, when formulating health policies for RDs in Turkey, it is crucial to take into account the limited economic support available. Furthermore, the absence of a precise definition and comprehensive guidelines pertaining to RDs serves as the primary basis for theoretical justification. This also raises concerns about the government’s accountability and its impact on RD patients’ access to care. Kodra et al. (2018) also emphasize the significance of a precise definition in enhancing the quality of RD registries.
Morality was the second most frequent strategy employed during the deliberations of the legislators. Through the use of abstraction, the legislators endeavored to underscore the significance of ethical considerations and human rights matters when providing aid to patients afflicted by RDs. They asserted that access to healthcare constitutes an inherent human entitlement, while simultaneously levying accusations against the government for its purportedly inadequate efforts in extending support. Additionally, the legislators drew attention to the contrasting circumstances between Hong Kong and other jurisdictions that had implemented legislation and established frameworks to assist individuals with RDs. They underscored the pressing need for Hong Kong to align itself with these regions and institute pragmatic regulations. The findings resonate with the assertion made by Quintal et al. (2023) that nations or regions without adequate welfare systems might encounter morally challenging circumstances. These discussions served to underscore the moral imperative of administering appropriate care and assistance to patients with RDs, while also urging the Government to adhere to international standards in this sphere.
The legislators employed authorization as the third most frequently used strategy. They argued that the efforts made by the former Chief Executive, Carrie Lam, were inadequate and called for the establishment of a comprehensive support system for all patients, regardless of personal sympathies. The Government’s actions were further criticized as heartless and lacking in respect. These unfavorable traits were attributed to the Government’s embrace of a medical cost-effectiveness philosophy and the absence of universal suffrage, which limited direct public accountability (Chiu et al., 2018). In similar contexts where universal suffrage is absent, Pak Gure and İnce (2021) also highlight deficiencies in Turkey’s approach to RD-related health policies and social policies.
The final most frequently employed strategy was mythopoesis, encompassing moral and cautionary tales. The aim of the cautionary tales was to cultivate awareness among listeners regarding the dire consequences that could befall patients and their families in the absence of appropriate care. These tales endeavored to foster a sense of communal belonging by eliciting empathy and identification. Conversely, the moral tales sought to inspire and instill hope, aligning with the values of “common prosperity” and the imperative of aiding the less privileged, which the Chinese government has placed considerable emphasis on (Chan & Yu, 2023). By resorting to mythopoesis, legislators sought to forge a profound emotional connection with the audience, while underscoring the crucial importance of providing care and support to individuals with RDs.
By scrutinizing the legitimation strategies implemented by diverse legislators in shaping the discourse surrounding RDs, our investigation provides a comprehensive understanding of the rhetorical defenses employed within the context of the LegCo. The profound impact of discursive strategies on policy deliberations is exemplified by the scholarly contributions of Yu and Tay (2022), who elucidated how China’s foreign ministry spokespersons utilized such strategies to foster policy unity during the COVID-19 pandemic. Through shedding light on these dynamics, we enhance our comprehension of the construction, negotiation, and justification of discourse within the LegCo, thereby gaining insights into the intricacies involved in the formulation of policies pertaining to RDs in Hong Kong. Given the inherent complexity of the political context and the formation of discourse, it is imperative to delve deeper into the specific milieu of the LegCo and its role in advocating legislation relevant to RDs, in conjunction with the linguistic findings we have made, to facilitate further studies.
Conclusion
As previously highlighted, limited attention has been devoted to the discursive construction of legitimation within the legal and healthcare context. This research has employed van Leeuwen’s (2008) sociosemantic approach to conduct an analysis and has provided a comprehensive overview of the endeavors made by legislators in the LegCo to establish legitimacy for the proposal titled “Enacting Legislation to Protect the Rights and Interests of Rare Disease Patients” (Legislative Council, 2019, p. 5801). Four strategies for legitimation (rationalization, morality, authorization, and mythopoesis) were identified, and the legislators’ discourse carries ideological implications in relation to humanitarianism. The research findings have demonstrated the value of linguistic analysis in comprehending legislative discourse and have set an exemplar for adopting a linguistic perspective to advocate for assistance to RD patients. This perspective holds significance within the broader context of global RD policies. However, it is important to note that this study is limited in its scope, as it solely examines the LegCo Hansard within the Hong Kong context. Thus, we encourage further research to explore the challenges associated with implementing the Uncommon Disorders Registry and its potential impact on individuals with RDs in Hong Kong. To effectively address the needs of RD patients, policymakers and stakeholders must possess a comprehensive understanding of the difficulties involved and the potential consequences associated with the adoption of such a registry. Moreover, we recommend future research in other countries/regions to advance the knowledge and development of global RD policies.
Footnotes
Acknowledgements
We would like to thank the anonymous reviewers for their very useful comments on an earlier version of this paper.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Data Availability Statement
The data is available at the public database provided by the Legislative Council of Hong Kong.