The Humanitarian Utilitarianism Choice For Ethical Governance For The Prevention And Treatment Of Rare Disease

In recent years,the problem of rare diseases has become an important goal of health care activities around the world.The ethical value recognition of rare diseases will determine how we deal with rare diseases.The first chapter discusses the general situation of rare diseases.Firstly,the definition,classification and characteristics of rare diseases are expounded.Rare disease is a general term for diseases with extremely low incidence.It is a relative,dynamic,and changing concept.Different countries or regions focus on the identification of rare diseases according to their actual conditions.Rare diseases are characterized by a small number of patients with single disease,but a large number of diseases and a large number of total patients.Most of them are genetic diseases,and the causes of many diseases are unknown.The condition is usually serious and mostly chronic and progressive.Secondly,the history and current situation of the prevention and treatment of rare diseases in the United States,Japan,the European Union and China are analyzed.Thirdly,it discusses the realistic dilemma faced by the rare disease patients,including being neglected by society for a long time.Facing the lack of medical and health resources such as diagnosis and treatment methods and poor accessibility of drugs,the rare disease patients is facing great health inequity.Finally,it analyzes the social problems faced by the rare disease patients.The disease has brought a heavy economic and care burden to the society and the family.Rare disease patients have poor psychological status,and there is serious social stigma and discrimination.This part demonstrates that rare diseases have become serious public health and social problems that must be faced and resolved.The second chapter discusses the ethical dilemma faced by the prevention and treatment of rare diseases.First,is it necessary to help the minority group of rare diseases? Helping rare disease patients is determined by the sanctity and supremacy of life itself,the inevitable requirement of humanistic medicine,and the particularity of rare diseases.Second,is the life of a minority group of rare diseases worth saving?Assistance to rare disease patients is not only valuable to the sick person,but also to the patients’ family and society.It can promote the progress of medical science and benefit some common disease patients,and help create an ethical atmosphere of social mutual help and social solidarity.Third,is there any possibility of cure for rare diseases? The rapid development of gene sequencing technology has provided a powerful boost to the diagnosis and research of rare diseases.The rapid development of molecular biology and genomics provides more therapies for rare diseases.The rapid economic development has provided material guarantee for solving the problem of rare diseases.Fourth,do rare disease patients have the rights to assistance? International human rights documents such as the Universal Declaration of Human Rights,the International Covenant on Civil and Political Rights,and the International Covenant on Economic,Social and Cultural Rights,as well as human rights conventions formulated by some regional international organizations,such as the European Convention on Human Rights and the American Convention on Human Rights and so on,which all put forward the respect and protection of the rights to life of human beings.Chinese laws and regulations and related policies also propose to protect citizens’ rights to life and health.Fifth,does the state have an obligation to help rare disease patients? The establishment of a modern national governance system has made it responsible for the health of citizens,and it is also an inevitable requirement for fairness and justice in the social system.This part demonstrates the ethical legitimacy of helping rare disease patients.The third chapter is the theoretical demonstration of humanitarian utilitarianism.If we only rely on the ethical legitimacy of rare disease relief without considering the complexity and reality faced by rare diseases in the implementation,it will still be difficult to truly solve the problem of rare diseases,and even inhibit or hinder the development of rare disease.If we only emphasize humanity and not utilitarianism,the system can only be reduced to a formality,and if we only emphasize utilitarianism but not humanity,policies will also become a tool for companies to pursue profits.When it comes to rare diseases,humanity and utilitarianism cannot be compromised.The core of the problem is how to deal with the dispute between justice and interests.The deontological ethics represented by humanism and the consequentialism represented by utilitarianism are put forward under a certain social background.As an ideological weapon to solve the social problems at that time,each theory has its main problems to be solved,and at the same time,it must have certain limitations.Under the trend of contemporary marketization,the contradiction between righteousness and profit has become more acute.humanitarian utilitarianism is just a new ethical view proposed to resolve the conflict between righteousness and interests.In fact,Chinese and Western ethical thoughts have long contained the idea of combining righteousness and interests,and putting righteousness first.Humanism and utilitarianism can be unified at the level of method and value.This introduces the concept of humanitarian utilitarianism,which is a value that combines humanism and utilitarianism,which not only emphasizes the moral obligation of saving lives and helping the wounded advocated by humanitarianism,advocates motivation,but also absorbs the practical effect of utilitarianism,and constantly adjusts from reality to achieve the same value of humanity and utilitarianism..Its new manifestation is in the understanding of life,while insisting on guarding the sanctity of life,it also considers efficiency and consequences.In the management and operation of the hospital,the combination of righteousness and profit must be adhered to,but righteousness must come first and interests after.There is no objection to the pursuit of personal interests by medical personnel,but the interests of patients cannot be damaged.It is not opposed to the application of medical high-tech,but need to avoid the misunderstanding of technocracy.There is no objection to the involvement of capital in medicine.Capital can be used by medicine,but capital cannot lead the development of medicine and cannot shake the nature of humanistic medicine.This part demonstrates from the theoretical level that humanitarian utilitarianism can be used as a value throughout the solution of rare diseases.The fourth chapter demonstrates how humanitarian utilitarianism plays a role in the prevention and treatment of rare diseases.The history of the listing of cystic fibrosis drugs in the United States,and the game of righteousness and interests behind the constant adjustment of orphan drug-related policies.Analysis of the case of thalidomide pricing in Japan,and the game of righteousness and interests behind the government price control of orphan drugs.A case analysis of drug security for patients with spinal muscular atrophy in China,and the game of righteousness and interests behind the new exploration of the multi-party co-payment model for ultra-high-value orphan drugs and rare disease seed funds.Demonstrated that humanitarian utilitarianism is applicable to solving the problem of rare diseases,and also emphasized that the key to solving the problem of rare diseases is to find the balance point between humanity and utilitarianism,and this balance point is not static,and needs to be adjusted continuously according to the actual situation.Under this premise,the interests of all parties are constantly adjusted through utilitarianism.This part demonstrates from the practical level that humanitarian utilitarianism can play a value-leading role in practice,and it is a smooth way to solve the dilemma of rare disease prevention and treatment.The fifth chapter discusses the path of ethical governance of rare diseases.The theory of humanitarian utilitarianism wants to prove its ethical value in the prevention and treatment of rare diseases.It is necessary to combine theory and practice to put forward the path of ethical governance.The first is to publicize the importance of rare disease prevention and treatment to the society,and reversing society’s prejudice against rare diseases.The second is to strengthen the refined management of rare diseases,and deal with rare diseases in different levels and stages.Third,we should pay equal attention to the prevention and treatment of rare diseases,early detection and treatment is the best way.The fourth is that orphan drugs are mainly imported from abroad at this stage,while increasing incentives for local independent research and development.Fifth,risk sharing among stakeholders.The sixth is to advocate multi-party cooperation,especially global cooperation to deal with rare diseases.This part gives the ethical governance path of rare diseases from the perspective of humanitarian utilitarianism.Finally,it is concluded that the exploration of ethical path of prevention and treatment of rare diseases and the formation of humanitarian utilitarianism are always completed in the exploration of prevention and treatment of rare diseases in America,Japan and China,the repeated game between humanity and utilitarianism,and the repeated comparison between humanity and utilitarianism.Humanitarian utilitarianism is not only a philosophical conception,but more importantly,it is formed on the basis of rich scientific practice.Humanitarian utilitarianism is the theoretical sublimation of various practices,and it is a theoretical summary and philosophical thinking on rare diseases and other related practices.Humanitarian utilitarianism is a smooth way out of the ethical dilemma of prevention and treatment of rare diseases.It is absolutely necessary to pay attention to rare disease,not optional."On the road to health,no one can be less." Don’t give up on anyone,life comes first.Caring for vulnerable groups represented by rare diseases is a symbol of social civilization and progress.They share breath,life and weal and woe with us.