THE FACTORS IMPACTING ATTITUDE OF MEDICAL COMMUNITY TO GENETIC RESEARCH AND MEDICAL CARE OF CHILDREN WITH INHERENT IMMUNITY ERRORS

Open Access Open Access
Restricted Access Access granted
Restricted Access Subscription or Fee Access

Abstract


The purpose of the study is to investigate factors influencing medical community's attitude to genetic research and medical care of children with inherent immunity errors and to develop recommendations for representatives of medical community (immunologists and allergists). Today, genetic research technologies and medical care provided on the basis of diagnostics are not considered as elements of health care management system in the Russian Federation. The factors (legal, ethical, organizational, etc.) affecting genetic research and medical care of patients with congenital immune errors are analyzed. The results of the expert survey carried out in sampling of allergists and immunologists of the Sverdlovsk Oblast are presented. Based on the results of survey, recommendations have been proposed for developing and implementing genetic research technologies and medical care. The conclusions are made concerning necessity of minimization of medical and social risks through introduction and regulatory consolidation of genetic research technologies and consulting technologies based on diagnosis of severe combined immunodeficiency; joining administrative and professional efforts in professional training in the field of genetic counseling, including other specialists in health care.

Full Text

Restricted Access

About the authors

L. I Voronina

The Federal State Autonomous Educational Institution of Higher Education «The First President of Russia B.N. Yeltsin Ural Federal University»

Email: l.i.voronina@urfu.ru
620002, Yekaterinburg, Russia

E. V Zaitseva

The Federal State Autonomous Educational Institution of Higher Education «The First President of Russia B.N. Yeltsin Ural Federal University»

620002, Yekaterinburg, Russia

I. A Tuzankina

The Federal State Budget Institution of Science «The Institute of Immunology and Physiology of the Ural Branch of the Russian Academy of Sciences»

620049, Yekaterinburg, Russia

References

  1. Тузанкина И.А., Дерябина С.С., Болков М.А. Первичные иммунодефициты в раннем возрасте. М.; 2018.
  2. Тузанкина И.А., Дерябина С.С., Болков М.А., Басс Е.А., Власова Е.В., Крохалева Я.М. Первичные иммунодефициты в раннем возрасте. М.: 2019.
  3. Печерских М.В. Управление процессом оказания медицинской помощи детям со злокачественными новообразованиями. Воронеж; 2009.
  4. Аксенова В.А., Леви Д.Т., Клевно Н.И. Туберкулез у детей и подростков. ГЭОТАР-Медиа; 2007.
  5. Селезнева А.И., Калатанова А.В., Афонькина О.В. Комплексный подход к изучению фармакологических веществ in vitro, ex vivo, in vivo. Медицинские науки. 2015; 37 (6):125.
  6. Сокол А.Ф. Современный врач: особенности, пути оптимизации профессиональных и личностных качеств. Социология медицины. 2014; 1(24): 12.
  7. Тузанкина И.А., Воронина Л.И., Зайцева Е.В. Развитие технологий генетических исследований и консультирования по выявлению врожденных ошибок иммунитета: проблемы и пути решения. Российский иммунологический журнал. 2019; 22(2): 1034-7.
  8. Voronina L., Zaitseva Е., Nechkin A. Tuzankina I. Legal and ethical aspects of development of molecular genetic research technologies in case of innate immunity errors. Opcion. 2019; (35) 21: 704.
  9. Валенсийская декларация по этическим проблемам проекта «Геном человека». 1998. Режим доступа: http://docs.cntd.ru/.
  10. Сборник статистических материалов. 2017. Режим доступа: http://www.miacso.ru/index.php/937-sbornik-statisticheskikh-materialov-za-2017-god.
  11. Mahlaoui N., Gathmann B., Kindle G. The European Society for Immunodeficiencies (ESID) Registry: recent advancements in the epidemiology of Primary Immunodeficiencies and how does that translate in clinical care. Rare diseases and orphan drugs. 2014; 1(4): 25-7.

Statistics

Views

Abstract - 65

PDF (Russian) - 0

Cited-By


Article Metrics

Metrics Loading ...

Refbacks

  • There are currently no refbacks.

Copyright (c) 2019 Eco-Vector



This website uses cookies

You consent to our cookies if you continue to use our website.

About Cookies