KoNIBP 재단법인 국가생명윤리정책원 (KOREA NATIONAL INSTITUTE FOR BIOETHICS POLLICY)

* 파일 다운로드 :  1-장기등기증가 차별,불이익 현황조사 및 개선방안 연구-국가생명윤리정책연구원-김성덕.pdf  

도서관 소장확인 : https://www.bprlib.kr/web/odi/odiTotalSearchDetail.do?controlNo=4837&marcGubun=mt

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학술연구용역사업 최종결과보고서  (연구기간 :  2012. 3. 7 - 2012. 9. 6)

장기등기증자 차별·불이익 현황 및 개선방안
A Study on the Present State and Improvement Plan of
Discrimination and Disadvantage for Living Organ Donor

주관연구기관 : (재) 국가생명윤리정책연구원
질병관리본부

목차

목 차
Ⅰ. 연구개발결과 요약문
최종결과보고서 요약문·······························································································································11
Summary ·····························································································································12
Ⅱ. 학술연구용역사업 연구결과
제1장 최종 연구개발 목표 ·······················································································································13
제1절 목표 ············································································································································13
제2절 목표 달성도 ············································································································16
제2장 최종 연구개발 내용 및 방법 ·········································································································17
제1절 연구 배경 ······················································································································17
제2절 연구 목적 ·····························································································································19
제3절 연구 내용 ···························································································································20
제4절 연구 방법 ···················································································································20
제3장 최종 연구개발 결과·······································································································21
제1절 생존 장기기증의 개요 ·····································································································21
1. 생존 장기기증의 분류 ···························································································································21
2. 생존 장기기증의 위험 및 후유증 ·········································································································25
3. 생존 장기기증의 윤리적 문제들 ···········································································································30
4. 생존 장기 기증 관련 법률 ·····················································································································42
제2절 국내·외 생존 장기기증 통계 현황 ·········································································································44
1. 국외 생존 장기 이식 및 기증 현황 ·····································································································44
2. 국내 생존 장기 이식 및 기증 현황 ·····································································································49
3. 생존 기증자의 부작용 발생 현황 ·······································································································57
제3절 국외 생존 장기기증 관련 제도 ··············································································································58
1. 미국 ···············································································································································58
2. 영국 ································································································································73
3. 스페인 ························································································································78
4. 일본 ······································································································································81
5. 유럽 연합(EU) ··················································································································83

제4절 국내 생존 장기기증 관련 제도 및 법률 현황 ··················································································88
1. ‘장기등이식에관한법률’ ···························································································································88
2. 생존 장기기증 관련 기관 ·······················································································································93
3. 우리나라 생존 장기 기증 절차 ·············································································································98
4. 우리나라 생존 장기기증 후 사후 관리 ·····························································································102
5. 우리나라 생존 장기 기증자 지원 제도 ·····························································································103
제5절 생존 장기기증 관련 설문 조사 ··········································································································104
1. Euro Living Donors 만족도 조사(satisfaction survey) ································································104
2. 생존 장기 기증자 설문조사 ·················································································································112
3. 장기이식코디네이터 설문조사 ·············································································································138
제6절 민간 건강 및 생명 보험 약관 검토 ····································································································145
1. 검토 대상 보험 ·····································································································································145
2. 검토 항목 ·······································································································································145
3. 검토 의견 ······································································································································146
제4장 연구결과 고찰 및 결론 ·············································································································147
제1절 고찰 및 결론 ·························································································································147
1. 불충분한 생존 장기기증 정보의 제공 ·······························································································147
2. 생존 장기기증 동의 절차 및 내용에 대한 확인 부재 ·································································148
3. 기증자 선별 및 평가 항목의 미흡 ·····································································································149
4. 기증 결정에 대한 충분한 검토 과정 결여 ·······················································································150
5. 기증자의 사후 관리 미흡 ···················································································································151
6. 기증자를 위한 지원 제도 미흡 ···········································································································152
7. 생존 기증자 체감 차별 및 불이익이 다수 존재 ·············································································152
제2절 정책 제언 ··············································································································153
1. 뇌사자 장기 기증 활성화 ·····················································································································153
2. 생존 장기기증에 관한 정보 제공 강화 ·····························································································153
3. 생존 장기기증 동의서 법적 양식 마련 ·····························································································153
4. 생존 장기 기증 진행 과정 및 절차에 대한 검토 ···········································································154
5. 생존 장기기증 전담 코디네이터 제도 도입 ·····················································································154
6. 생존 장기기증 희망자 선별 검사의 보완 ·······················································································155
7. 생존 장기 기증자 사후 건강관리 강화 ···························································································155
8. 생존 장기 기증자 및 수혜자 등록 및 데이터 구축 ·····································································155
9. 생존 장기기증 지원 제도 마련 ···········································································································156

제5장 연구성과 및 활용계획···················································································································157
제6장 기타 중요변경사항 ·························································································································159
제7장 연구비 사용 내역 ···························································································································160
제8장 참고문헌 ···········································································································································161
제9장 첨부서류 ·········································································································································165
1. WHO Guiding Principles on Human Cell, Tissues and Organ Transplantation, 2010 ·············· 166
2. 장기매매 및 이식관광에 관한 이스탄불 선언 ·························································································169
3. 생존신장기증자보호에 관한 암스테르담 포름 합의문 ···········································································175
4. 미국 장기기증 및 회복증진에 관한 법률 ·································································································178
5. 미국 OPTN 생존 장기이식에 관한 규정 ··································································································184
6. 미국 UNOS 규정 세칙B, 첨부 1. 장기이식프로그램지정기준 ·····························································190
7. 영국 생존 신장이식에 대한 지침서(요약) ································································································198
8. 일본 장기이식에관한법률, 2011 ··················································································································210
9. 일본 장기이식에관한법률 시행규칙, 2012 ································································································221
10. 일본 장기이식에관한법률의 운용에 관한 지침, 2012 ··········································································233
11. 일본 이식학회윤리지침 및 부록, 2007 ····································································································243
12. 일본 생체간이식에 관한 조사(요약), 2005 ·····························································································249
13. 스페인 생존신장이식에 대한 SEN-ONT 권고사항, 2010 ··································································264
14. 스페인 및 다른 국가 내 생존 신장 이식 현황 ·····················································································266
15. EULID 생존 장기기증자 설문조사지 ·······································································································303
16. 개인정보이용 및 연구참여 동의서 ···········································································································308
17. 장기기증자 기증 후 현황 조사 ·················································································································309
18. 조사결과(표) ··················································································································319
19. 생존 장기기증자 설문 주관식 답변 ·········································································································345
20. 생존 장기기증 관련 장기이식 코디네이터 설문지 ···············································································357
21. 건강 및 질병보험 약관 조사 자료 ···········································································································360
22. 대한장기이식코디네이터협회 임원 간담회 회의록 ···············································································390
23. 생존 장기기증자 인권보호 방안 관련 의료사회복지사 회의록 ·························································391

그 림 목 차
[그림 1] 연구 수행 체계도··········································································································15
[그림 2] 신장 기증자의 교환이식 모식도 ····························································································24
[그림 3] 2010년도 WHO 지역별 생존 기증 신장이식 현황 ······························································47
[그림 4] 10년간 우리나라 장기이식 추이 ····························································································50
[그림 5] 우리나라 장기 기증자 변화 추이 ····························································································52
[그림 6] 최근 10년간 우리나라 신장이식 추이 ··················································································53
[그림 7] 최근 10년간 우리나라 간장이식 추이 ··················································································54
[그림 8] 2010년도 생존 기증자 연령별 분포 ························································································55
[그림 9] 생존 기증자와 수혜자 관계······································································································57
[그림 10] 영국의 생존 장기 기증 업무 흐름도 ····················································································75
[그림 11] 영국의 생존 기증자 비용 배상 업무 ····················································································77
[그림 12] 스페인의 생존 장기기증 절차································································································80
[그림 13] 일본 생존 장기이식 절차 ········································································································82
[그림 14] 질병관리본부 조직도 ··············································································································94
[그림 15] 우리나라 생존 장기기증 이식업무처리 흐름도 ································································101

표 목 차
[표 1] 연구 목표 달성도 ········································································································16
[표 2] 생체 장기 기증과 관련된 위험의 종류 및 관련 요인들 ························································25
[표 3] 외과 수술에 따른 부작용의 중증도에 따른 분류····································································26
[표 4] 각국의 미성년자 생존 장기 기증 허용 여부 ············································································34
[표 5] 2010년도 세계 지역별 생존 장기 기증자 현황········································································45
[표 6] 2010년도 우리나라 장기이식 현황······························································································49
[표 7] 10년간 우리나라 장기이식 추이 ································································································50
[표 8] 우리나라 장기 기증자 변화 추이································································································51
[표 9] 최근 10년간 우리나라 신장이식 추이 ························································································52
[표 10] 최근 10년간 우리나라 간장이식 추이 ····················································································53
[표 11] 최근 10년간 우리나라 췌장이식 추이 ····················································································54
[표 12] 2010년도 생존 기증자 연령별 분포··························································································55
[표 13] 생존 기증자와 수혜자 관계 ········································································································56
[표 14] 생존 기증과 관련된 유럽 각국의 윤리위원회 역할······························································85
[표 15] EU생존 기증 만족도 조사 참여 국가 및 참여자 수 ··························································106
[표 16] EU생존 기증 만족도 조사 참여자의 성비 ············································································106
[표 17] EU생존 기증 만족도 조사 참여자의 기증 장기 ··································································106
[표 18] EU생존 기증 만족도 조사 참여자의 환자와의 관계··························································107
[표 19] EU생존 기증 만족도 조사 참여자의 기증 당시 직업 ························································107
[표 20] EU생존 기증 만족도 조사 참여자의 장기기증에 대한 견해············································107
[표 21] EU생존 기증 만족도 조사 참여자의 기증 동기 ··································································108
[표 22] EU생존 기증 만족도 조사 참여자의 기증에 대한 감정····················································108
[표 23] EU생존 기증 만족도 조사 참여자의 기증에 대한 부담 여부 및 정도 ·························· 108
[표 24] EU생존 기증 만족도 조사 참여자의 설명에 대한 만족도················································109
[표 25] EU생존 기증 만족도 조사 참여자의 사전 검사에 대한 의견 ··········································109
[표 26] EU생존 기증 만족도 조사 참여자의 병원 입원에 대한 의견 ··········································109
[표 27] EU생존 기증 만족도 조사 참여자의 기증으로 인한 고통에 대한 견해························ 110

[표 28] EU생존 기증 만족도 조사 참여자의 재기증 의사······························································110
[표 29] EU생존 기증 만족도 조사, 기증으로 인한 사회적 영향···················································110
[표 30] EU생존 기증 만족도 조사, 가족이나 사회생활에 영향·····················································111
[표 31] EU생존 기증 만족도 조사, 기증 후 삶의 질 변화 ·····························································111
[표 32] EU생존 기증 만족도 조사, 기증 후 건강 상태···································································111
[표 33] 응답자의 성비······························································································································114
[표 34] 응답자의 기증 장기 ··················································································································114
[표 35] 응답자의 연령······························································································································115
[표 36] 기증자와 수혜자의 관계············································································································115
[표 37] 생존 장기기증에 대한 태도 ····································································································116
[표 38] 생체장기 기증 인지 경로··········································································································117
[표 39] 생존 장기기증의 동기 ················································································································117
[표 40] 생존 장기기증 관련 정보 습득 경로······················································································118
[표 41] 기증 전 기증과정 및 적출수술에 관한 설명 ······································································118
[표 42] 장기기증 전 설명이 중요하다고 생각하는 지······································································119
[표 43] 장기기증 전 검사 및 수술과 관련한 설명이 충분했다고 생각하는지····························119
[표 44] 기증 전 부작용, 합병증 및 사망 위험에 대한 설명을 들었는지·····································120
[표 45] 수혜자의 장기이식 수술 결과가 성공적이지 않을 수 있다는 설명을 들었는지·········· 120
[표 46] 생존 장기이식 외에
뇌사자 또는 사망자로부터 장기이식이 가능하다는 설명을 들었는지 여부 ················· 121
[표 47] 기증 전 제공된 정보의 유용성································································································121
[표 48] 장기 기증에 대해 설명을 받고 충분하게 생각하고 결정하였는지··································122
[표 49] 장기기증 결정 과정에서 압력을 느낀 적이 있는지 ··························································122
[표 50] 장기기증 결정 과정에서 다른 사람과 상의 여부································································123
[표 51] 상의를 했다면 누구와 상의했는지 ························································································123
[표 52] 상의하지 않은 이유····················································································································124
[표 53] 장기기증 결정 시 가장 큰 걱정······························································································124
[표 54] 경험한 장기기증 설명 등의 과정에 대한 생각 ····································································125
[표 55] 장기기증 사전 검사의 어려움에 대한 의견··········································································125
[표 56] 장기기증을 위해 받았던 사전 검사 과정의 일상생활 방해 여부····································126

[표 57] 장기기증으로 인한 입원 기간··································································································126
[표 58] 장기기증을 위한 적출 수술 후 회복······················································································127
[표 59] 장기기증 후 일상생활로 돌아가는데 걸린 시간··································································127
[표 60] 장기기증을 위해 병원에 입원한 동안 적절한 보살핌을 받았는지··································128
[표 61] 장기기증 진행 과정에서 포기하고 싶다는 생각을 하신 적이 있는지····························128
[표 62] 장기기증 후 후유증 여부··········································································································129
[표 63] 장기기증으로 새로 복용하게 된 약이 있는지 여부 ····························································129
[표 64] 장기기증 수술 후 발생한 질환이 있는지 여부····································································130
[표 65] 기증 전의 설명과 경험 후의 일치 정도 ················································································130
[표 66] 기증 후 경험한 고통의 정도에 대한 생각············································································131
[표 67] 장기기증으로 발생한 경제적 손실 ··························································································131
[표 68] 기증이 가정 및 사회생활에 미친 영향··················································································132
[표 69] 장기기증 이후 사회적인 차별이나 불이익의 경험······························································133
[표 70] 건강보험이나 사보험(생명보험) 관련 문제를 경험하였는지 ·············································133
[표 71] 장기기증 비용 해결 방법··········································································································134
[표 72] 장기기증 수술 후 건강관리를 어디에서 받았는지······························································134
[표 73] 장기기증 수술 후 건강관리 받은 기간 ··················································································135
[표 74] 장기기증 후 건강에 관하여 적절한 조치를 받았는지························································135
[표 75] 현재 건강과 기증 전 건강 비교······························································································136
[표 76] 다시 기증을 선택할 기회가 주어진다면 다시 하겠는지····················································136
[표 77] 주변 사람에게 장기기증을 권장 의향····················································································137
[표 78] 기증 후 가장 걱정되는 것········································································································137
[표 79] 장기이식 코디네이터 설문 응답자 연령 ················································································139
[표 80] 장기이식 코디네이터 설문 응답자 업무 근속 기간 ····························································139
[표 81] 장기이식 코디네이터 설문 응답자 ··························································································139
[표 82] 장기이식 코디네이터 설문 응답자 업무 난이도··································································139
[표 83] 장기이식 코디네이터 설문 응답자 업무 만족도 ··································································140
[표 84] 현재 신장 기증자 건강관리 기간 및 응답자가 생각하는 이상적인 건강관리 기간···· 140
[표 85] 현재 신장 기증자 기증 후
건강관리 담당과 및 응답자가 생각하는 이상적인 건강관리 담당과·······························141

[표 86] 현재 간장 기증자 기증 후
건강관리 기간 및 응답자가 생각하는 이상적인 건강관리 기간·····································141
[표 87] 현재 간장 기증자 기증 후 관리 담당과 및 응답자가 생각하는 이상적인 담당과 ······ 142
[표 88] 응답자 근무 장기이식 의료기관 중 병원윤리위원회 설치 여부 ······································142
[표 89] 응답자 근무 장기이식 의료기관 중 비혈연 생존 장기기증 실시여부 ····························142
[표 90] 생존 장기기증에 병원윤리위원회의 개입 여부 ····································································142
[표 91] 생존 장기기증에 있어서 윤리 위원회의 역할······································································143
[표 92] 생존 장기 기증 관련 윤리위원회의 개입 필요성································································143
[표 93] 생존 장기 기증자 전담 코디네이터 유무··············································································143
[표 94] 생존 장기 기증자 전담 코디네이터의 필요 여부································································144
[표 95] 생존 장기 기증자를 위한 전담기구의 필요성 ····································································144