(seventh place)

The Measures for the Administration of Medical Appraisal of Sick and Disabled Children have been deliberated and adopted at the ministerial meeting of the State Family Planning Commission, and are hereby promulgated and shall come into force as of today.

Director: Zhang Weiqing

2002 1 month 18

Measures for the administration of medical appraisal of sick and disabled children

Chapter I General Provisions

Article 1 In order to strengthen the management of medical identification of sick and disabled children, implement the family planning policy and improve the quality of the birth population, these Measures are formulated in accordance with the Regulations on the Administration of Family Planning Technical Services and other relevant laws and regulations of the state.

Article 2 These Measures shall apply to People's Republic of China (PRC) citizens living in People's Republic of China (PRC) whose children are sick and disabled for various reasons, who request to have another baby and apply for medical appraisal of the sick and disabled children.

Article 3 The term "disabled children" as mentioned in these Measures refers to children who are disabled due to congenital (including hereditary and non-hereditary diseases) or acquired diseases or accidental injuries, and cannot be treated at present or grow into a normal labor force after systematic treatment.

Article 4 Medical appraisal of disabled children refers to a specialized institution for medical appraisal of disabled children, which uses modern medical knowledge, technology and means, and makes appraisal conclusions on whether the appraised person is disabled and its degree according to the Diagnostic Criteria for Medical Appraisal of Disabled Children and the Guiding Principles for Parental Reproduction, and puts forward corresponding guiding opinions.

Article 5 The State Family Planning Commission shall be responsible for the management of medical appraisal of sick and disabled children throughout the country. Provincial and municipal family planning administrative departments shall be responsible for the organization, implementation, management and supervision of medical identification of disabled children within their respective jurisdictions.

Chapter II Evaluation Institutions

Sixth provincial and municipal family planning administrative departments to establish a medical expert database for disabled children. The members of the expert database are composed of relevant professionals who are serious and responsible, impartial, with high technical level, rich clinical experience, enthusiastic about family planning, and have the technical title of medical specialty at or above the deputy senior level. Before each identification, according to the number of applications for identification and disease classification, experts are drawn from the expert database to set up several identification groups, each of which consists of more than 5 experts. Each appraisal group has 1 team leader and 1-2 deputy team leader.

Article 7 The appraisal team shall perform the following duties under the leadership of the family planning administrative department:

(a) to review whether the medical identification materials of sick and disabled children are complete, true and reliable, and put forward relevant materials that need to be supplemented;

(II) Determination of medical identification, on-site physical examination and related auxiliary examination items for sick and disabled children, putting forward disease diagnosis (including disease name, etiology and genetic mode), degree of disability and risk analysis of birth defects recurrence of children who have given birth again, and putting forward suggestions on whether to give birth again and prenatal diagnosis according to the Guiding Principles;

(three) for cases that are difficult to diagnose and need treatment and observation temporarily, the time for putting forward treatment opinions and re-identification;

(four) to provide medical consulting services for the parents and relatives of the appraiser;

(five) to summarize the work of medical identification of sick and disabled children and put forward suggestions for improving the identification work;

(six) responsible for the medical appraisal of disabled children entrusted by the family planning administrative department at the same level.

Medical experts for disabled children perform their duties during the appraisal period. During the non-appraisal period, the opinions of any institution or individual shall not be used as the basis for medical appraisal of sick and disabled children.

Article 8 The relevant auxiliary inspection items determined by the appraisal team shall be carried out in the family planning technical service institutions or medical institutions designated by the family planning administrative department.

Ninth appraisal work shall be presided over by the team leader or deputy team leader. The appraisal diagnosis and conclusion must be made by the appraisal group through collective discussion. Different opinions should be truthfully recorded. Members participating in the appraisal shall sign the appraisal conclusion and affix the special seal for appraisal.

Chapter III Evaluation Application and Approval

Article 10 Anyone who thinks that his children have obvious disabilities or serious diseases, meet the requirements stipulated by laws and regulations, and requires another birth arrangement may apply for medical appraisal of disabled children.

Article 11 To apply for medical appraisal of sick and disabled children, in principle, a written application shall be submitted to the unit where the woman works or the village (neighborhood) committee where the woman's household registration is located, and the household registration book, relevant medical history data and other materials stipulated by the family planning administrative department of the local people's government at or above the county level shall be submitted.

Article 12 A unit or village (neighborhood) committee shall conduct a preliminary examination of the medical appraisers who apply for disabled children, issue written opinions and affix their official seals, and report to the family planning administrative department of the township (town, street) where the woman's household registration is located within 20 working days from the date of receiving the application materials.

Article 13 The family planning administrative department of a township (town, street) shall re-verify the personnel who apply for medical appraisal of disabled children and conduct necessary social and family surveys, sign an opinion on the Application Form for Medical Appraisal of Disabled Children, affix its official seal, and report it to the family planning administrative department at the county level within 20 working days from the date of receiving the application materials.

Article 14 The county-level family planning administrative department is responsible for reviewing whether the materials applied for appraisal are complete, authentic and reliable, signing opinions and building official seals, and reporting all materials to the municipal family planning administrative department with districts 30 working days before the appraisal date.

Fifteenth districts of the municipal family planning administrative departments according to the situation for half a year or a year to organize an appraisal.

Article 16 If the appraisal conclusion cannot be made due to the limitation of local medical technical conditions, the municipal appraisal group with districts shall put forward written opinions on the medical appraisal of sick and disabled children at the provincial level, and apply for the provincial appraisal with the consent of the family planning administrative department at the same level.

Seventeenth parties have objections to the appraisal conclusion made by the municipal appraisal team with districts, and may apply to the municipal family planning administrative department with districts for provincial appraisal within 0 months from the date of receiving the notice of appraisal conclusion.

The municipal family planning administrative department with districts shall submit relevant materials to the provincial family planning administrative department within 30 working days after receiving the application for provincial appraisal submitted by the parties concerned.

Eighteenth provincial family planning administrative departments regularly identify the organizations that apply for re-identification according to the situation.

Provincial appraisal is final.

Nineteenth provincial or municipal family planning administrative departments will notify the county-level family planning administrative departments and applicants in writing within 30 working days.

Chapter IV Management Supervision and Legal Responsibility

Twentieth family planning administrative departments at all levels responsible for medical identification of sick and disabled children should establish and improve the file management system. The medical appraisal data of sick and disabled children shall be kept for a long time by the family planning administrative department at the same level that made the appraisal conclusion. Family planning administrative departments at or above the county level shall track and register the health status of re-born children.

Twenty-first medical appraisal fees for sick and disabled children (including appraisal fees and auxiliary examination fees) shall be borne by the applicant, and the charging standards shall be approved by the price departments of all provinces, autonomous regions and municipalities directly under the central government.

Twenty-second appraisal organizations independently carry out their work according to law, and no organization or individual may interfere in the appraisal work.

The family investigation, social investigation and medical appraisal involved in the medical appraisal of sick and disabled children all implement the avoidance system.

Twenty-third in the process of medical identification of sick and disabled children, one of the following acts shall be given administrative sanctions by the unit to which they belong, and economic penalties shall be given according to relevant laws and regulations. If the circumstances are serious enough to constitute a crime, criminal responsibility shall be investigated by judicial organs:

(1) Providing perjury or issuing false medical diagnosis certificates for the parties concerned;

(2) Accepting bribes or soliciting property from the parties concerned;

(3) The appraiser practices fraud and provides false materials, which leads to incorrect appraisal conclusion;

(4) maintaining or changing the original appraisal conclusion without normal medical appraisal procedures;

(five) there are other acts that seriously hinder the identification work.

Chapter V Supplementary Provisions

Twenty-fourth provincial family planning administrative departments may formulate supplementary provisions for the implementation of these measures according to local actual conditions. The application form for medical appraisal of disabled children and the notice of appraisal conclusion shall be formulated by the provincial family planning administrative department and reported to the State Family Planning Commission for the record.

Article 25 The State Family Planning Commission shall be responsible for the interpretation of these Measures.

Article 26 These Measures shall come into force as of the date of promulgation. The Interim Measures for the Administration of Medical Appraisal and Diagnosis of Only-child Sick and Disabled Children 1990 issued by the State Family Planning Commission on September 30th shall be abolished at the same time.

Attachment: Diagnostic criteria for medical identification of disabled children and guiding principles for parents' reproduction.

1. Non-hereditary diseases are disabled by non-hereditary diseases, and their parents generally do not have the same diseases when they give birth again.

(1) respiratory diseases

1. Bronchiectasis complicated with pulmonary abscess and emphysema seriously affects lung function and leads to pulmonary insufficiency. Chest X-ray or bronchography and pulmonary function examination confirmed that the patient could not be operated or could not return to normal function after operation.

2. Idiopathic pulmonary hemosiderosis, confirmed by chest X-ray and laboratory examination, accompanied by pulmonary insufficiency.

3. Severe bronchial asthma, chronic pneumonia complicated with pulmonary heart disease, typical clinical manifestations, recurrent attacks, confirmed by chest X-ray, electrocardiogram, blood gas analysis and other tests with emphysema and pulmonary heart insufficiency.

4. The respiratory tract of nose, pharynx and larynx is seriously deformed, which seriously affects the physiological function and cannot be corrected by surgical treatment.

5. Severe thoracic deformity, pleural lesions, pulmonary cyst, etc. Can not be operated or still affect lung function two years after operation.

(2) Diseases of digestive system

1. Congenital digestive tract malformation and digestive tract injury caused by various reasons, confirmed by X-ray examination, can not be operated or after the operation, it still seriously affects normal development and cannot become a normal labor force.

Liver cirrhosis, confirmed by clinical and various auxiliary examinations, after more than two years of systematic treatment, liver function is still seriously damaged.

(3) cardiovascular diseases

1. Non-hereditary cardiovascular malformations, such as severe tetralogy of Fallot, atrial septal defect, ventricular septal defect and complete transposition of great arteries, have typical clinical manifestations such as cyanosis, hypoxia and heart failure. The diagnosis was made by heart examination, X-ray, electrocardiogram, echocardiography, cardiac catheterization and angiocardiography. The operation cannot be performed or the operation effect is not good.

2. Rheumatic heart disease with typical symptoms and signs can be diagnosed by X-ray, electrocardiogram and echocardiography.

3. Infectious myocarditis, with typical symptoms and signs, still has serious arrhythmia and cardiac insufficiency after more than two years of systematic treatment.

4. Primary cardiomyopathy with clinical symptoms and signs accompanied by heart failure can be diagnosed by X-ray, electrocardiogram and echocardiography.

5. Other heart diseases and cardiac insufficiency have been systematically treated for more than two years.

Diseases of urogenital system

1. Urogenital system is severely deformed and underdeveloped, which affects physiological function and cannot be operated or recovered after operation.

② Chronic renal insufficiency caused by various reasons is still ineffective after systematic treatment for more than two years.

3. Nephrotic syndrome, with typical clinical manifestations, has been confirmed by laboratory examination, and has not been relieved or developed into chronic renal failure after more than two years of systematic treatment.

4. Renal vascular hypertension, with hypertension as the main symptom and sign, was confirmed by radionuclide renogram, renal arteriography and plasma renin activity determination. , surgical treatment is ineffective.

(5) Blood system diseases

1. Aplastic anemia, hemolytic anemia, idiopathic thrombocytopenic purpura, etc. , with typical clinical manifestations, confirmed by peripheral blood picture and bone marrow picture, is ineffective after systematic treatment for more than two years.

2. All kinds of leukemia, with typical clinical manifestations, are confirmed by peripheral blood picture, bone marrow picture or other examinations.

(vi) Connective tissue diseases

Connective tissue diseases, such as dermatomyositis, systemic lupus erythematosus, polyarteritis nodosa, rheumatic fever, etc. After more than two years of systematic treatment, it is ineffective and causes tissue and organ damage or limb dysfunction.

(7) Nervous system diseases

1. Disability caused by various nervous system diseases, accompanied by severe neurological dysfunction and mental retardation above moderate level, with IQ index below 55 in IQ test.

2. Encephalitis, meningitis, poliomyelitis, myelitis and other diseases have caused serious sequelae and neurological dysfunction, with exact medical history, symptoms and signs, and confirmed by other auxiliary examinations.

3. Cerebral hypoplasia, hydrocephalus, cerebral palsy, typical symptoms and signs, which can not become a normal labor force after examination and diagnosis.

4. Vascular malformation of brain and spinal cord with symptoms and signs, diagnosed by auxiliary examination, can not be operated or the effect after operation is poor.

5. Secondary epilepsy, with obvious etiology, detailed medical history of more than two years, ineffective after systematic treatment, frequent seizures, EEG and other tests confirmed.

(VIII) Endocrine diseases

1. Hereditary pituitary dwarfism, giant pituitary malformation, sporadic cretinism, hypothyroidism in childhood, etc. , with typical symptoms and signs, has been seriously affected by laboratory examination, and can not be treated or failed after systematic treatment for more than two years.

2. The severity of endemic cretinism is the same as sporadic cretinism, but the recurrence rate is high, so it is generally not suitable for childbearing. After the systematic treatment is effective, the parturient can consider giving birth again.

(9) Motor system diseases

Skeletal system deformity, joint movement disorder, spinal column and limb disability caused by various factors can not move normally, which seriously affects growth and development. After more than two years of systematic treatment, there is no obvious effect or surgical correction, and it cannot become a normal labor force.

(10) Acquired eye and ear diseases

1. People who are blind (including monocular blindness) and deaf due to various acquired reasons.

2. Visual impairment caused by trauma or other eye diseases, after treatment, the corrected visual acuity of both eyes is still below 0.3, or the visual acuity of one eye is below 0.2, and the visual acuity of the other eye is below 0.5, making it difficult to take care of themselves.

(1 1) Other diseases

1. Diseases that can't be treated at present or still have poor results after systematic treatment, which seriously affect physiological functions and can't become a normal labor force.

2. Various malignant tumors, malignant histiocytosis, histiocytosis, etc. , with typical clinical manifestations, confirmed by various tests.

3. Extensive burns, scalds, trauma, hemangioma, nevus, etc. , seriously affect the function, can not be corrected surgically or the treatment effect is not good.

Second, hereditary diseases.

Children who are disabled by the following genetic diseases and cannot grow into normal labor force shall be judged comprehensively to determine whether they are suitable for re-birth according to the genetic mode and prenatal diagnosis, and according to the guiding principles. Those without family history are not necessarily genetic diseases, such as recessive linkage inheritance, which can only be fully expressed in each generation. Therefore, family history should not only look at parents, brothers and sisters, but also expand the scope to understand their grandparents, uncles, aunts, uncles, cousins and draw a genealogy. Some recessive genetic diseases, due to the high gene frequency of the population, sometimes even if the blood relationship is far away, will make their children sick. Need to know the family history of both parties.

(a) autosomal dominant genetic diseases

1. Common diseases: achondroplasia, lack of fingers, syndactyly, osteogenesis hypoplasia, Marfan's syndrome, congenital atresia of external auditory canal, mandibular facial bone hypoplasia, congenital myotonia, torsion spasm, periodic paralysis, familial multiple gastrointestinal polyps, bladder valgus, polycystic kidney (adult type), neurofibroma, renal diabetes, tuberous sclerosis, congenital. Retinoblastoma, congenital spherocytosis, thalassemia, ichthyosis, hereditary angioneurotic laryngeal edema, variant erythematous keratosis, hereditary hemorrhagic telangiectasia, chronic progressive chorea, pityriasis pilosa, idiopathic fibroalveolitis, etc.

2. Guiding principles

(1) If one parent of a disabled child is sick, the risk of recurrence is very high (50%). If there is no reliable prenatal diagnosis method, don't give birth again.

(2) The disabled children's parents are normal, and the family investigation excludes the family genetic disease history, which may be caused by gene mutation, and the risk of recurrence is low, so we can consider giving birth again.

(2) autosomal recessive genetic diseases

Common diseases: albinism, phenylketonuria, galactosemia, glycogen storage disease, hypophosphatasis, sphingomyelin storage disease, mucopolysaccharide storage disease (other than type II), homocystinuria, uremia, familial amaurosis, hepatolenticular degeneration, congenital deafness's disease, microcephaly, polycystic kidney (infantile type), etc. Laurenby syndrome, pernicious anemia (congenital type), hereditary cerebellar ataxia, congenital glaucoma, congenital microphthalmia, congenital color blindness, retinitis pigmentosa, xeroderma pigmentosum, pituitary dwarfism, premature senility, hepatorenal syndrome, hereditary Q-T prolongation syndrome, endocardial elastic fiber hyperplasia, hereditary agranulocytosis in infants, progressive spinal muscular atrophy in infants, alveoli.

2. Guiding principles

(1) Although the parents of disabled children are normal in appearance, they are all carriers of pathogenic genes. Every child born has a 25% chance of getting sick and 50% is a carrier, so the risk of recurrence is very high. If there is no reliable prenatal diagnosis method, don't give birth again.

(2) Diseases that can be prevented and treated in neonatal period, such as phenylketonuria, galactosemia, sporadic cretinism, etc. If the first child causes irreversible mental retardation for some reason, it is possible to consider giving birth again. But screening and laboratory tests must be carried out after birth. If you are sick, you should take medicine or diet treatment in time; If there are no conditions for early screening, diagnosis and treatment, it is not appropriate to give birth again.

X-linked recessive genetic disease

1. Common diseases: such as progressive muscular dystrophy (Duchenne type) and hemophilia (types A and B). Agammaglobulinemia, anhidrotic ectodermal dysplasia, mucopolysaccharidosis (type II), self-destructive appearance syndrome, renal diabetes insipidus, chronic granuloma, hydrocephalus caused by aqueduct obstruction, etc.

2. Guiding principles

(1) The risk of recurrence of X-linked recessive genetic disease is very high, with 50% of male patients and 50% of female carriers, so it is not suitable for reproduction.

(2) For Duchenne muscular dystrophy, hemophilia A or B and other diseases that can be diagnosed before birth, whether it is suitable for childbearing is determined according to the prenatal diagnosis results. Without prenatal diagnosis conditions, it is not appropriate to give birth again.

(3) If the maternal family (uncle, nephew, cousin) has no disease and the sick child may be caused by genetic mutation, then you can consider giving birth again.

X-linked dominant genetic disease

1. Common diseases: such as vitamin D resistant rickets, hereditary nephritis, congenital nystagmus, glucose -6- phosphate dehydrogenase deficiency, etc.

2. Guiding principles

(1) When the first-degree and second-degree relatives of disabled children are not sick, it may be caused by gene mutation, and the risk of recurrence is relatively low, so we can consider giving birth again.

(2) When the mother of a disabled child is sick, each child has a 50% chance of getting sick, and the risk of recurrence is high, so it is not appropriate to give birth again.

(3) When the father of a disabled child is sick, every girl is sick and all boys are normal. After prenatal diagnosis, you can consider giving birth to a second child. Without prenatal diagnosis conditions, it is not appropriate to give birth again.

(5) Polygenic genetic diseases

1. Common diseases: such as congenital heart disease, childhood schizophrenia, familial mental retardation, spina bifida, anencephaly, juvenile diabetes, congenital hypertrophic pyloric stenosis, myasthenia gravis, congenital megacolon, airway and esophageal fistula, congenital cleft palate, congenital dislocation of hip joint, congenital esophageal atresia, clubfoot, primary epilepsy, manic-depressive psychosis, hypospadias and congenital asthma.

2. Guiding principles

(1) Patent ductus arteriosus, congenital hypertrophic pyloric stenosis, congenital megacolon, congenital cleft palate, congenital dislocation of hip joint, etc. The surgical effect is good and it is not suitable for reproduction.

(2) For prenatal diagnosable diseases such as spina bifida and anencephaly, in principle, we can consider giving birth again, but under the supervision of prenatal diagnosis. Without prenatal diagnosis conditions, it is not appropriate to give birth again.

(3) Do a family survey for diseases that cannot be diagnosed before birth. If the first-and second-degree relatives are not sick and the recurrence risk rate is less than 5%, they can consider giving birth again; First-and second-degree relatives are patients with the same disease, and the risk of recurrence is higher than 10%, so it is not suitable to give birth again.

(6) Chromosome diseases

1. Common diseases: such as 2 1- trisomy syndrome, 13- trisomy syndrome, 18- trisomy syndrome, meow syndrome, Dunant syndrome, Creutzfeldt-Jakob syndrome, unbalanced rearrangement and fragile X syndrome.

2. Guiding principles

Children with (1) chromosome diseases should also have their parents' chromosomes examined. If it is normal, you can consider giving birth again, but you must be diagnosed as a normal fetus before delivery.

(2) Children with chromosome diseases, if one of their parents is a carrier of homologous chromosome translocation, the recurrence rate is 100%, which is not suitable for reproduction; If one of his parents is a carrier of non-homologous chromosome translocation, he can consider giving birth again, but he must be diagnosed as a normal fetus before delivery. Without prenatal diagnosis conditions, it is not appropriate to give birth again.

Third, others.

1. For other genetic diseases or diseases whose genetic nature is difficult to determine, consultation should be organized, and the preliminary diagnosis opinions, all examination data and family investigation data should be reported to the provincial medical appraisal group for further diagnosis.

2. Parents of disabled children suffer from serious diseases, such as infectious hepatitis, tuberculosis, sexually transmitted diseases, AIDS, heart disease, primary thrombocytopenic purpura, diabetes, hyperthyroidism, epilepsy and malignant tumors. And it is not suitable for childbearing before it is cured. After the approval of the re-fertility index, it should be given birth under the guidance of family planning technical services and medical and health departments, and consultation and pre-pregnancy and pregnancy examination should be carried out.

Release department: National Development and Reform Commission (including the former State Development Planning Commission and the former State Planning Commission), release date: 0 1.08, implementation date: 0 1.08 in 2002, and 2002 (stipulated by the central government).