Везде
Orphan Diseases: Biosocial Loci and Regulatory Practices
Table of contents
Annotation Estimate Publication content
References Comments
Share
QR
Metrics
Orphan Diseases: Biosocial Loci and Regulatory Practices
Annotation
PII
S023620070007678-2-
DOI
10.31857/S023620070007678-2
Publication type
Article
Status
Published
Authors
Olga Popova 
ORCID: 0000-0002-3825-7544
Occupation: Leading Researcher, Head of the Department of Humanitarian Expertise and Bioethics
Affiliation: RAS Institute of Philosophy
Address: 12/1 Goncharnaya Str., Moscow 109240, Russian Federation
Edition
Volume 30 Issue 6
Pages
156-173
Abstract

The article discusses the existing regulatory approaches to the problem of orphan (rare) diseases, conducts their ethical and philosophical analysis, and demonstrates the possibility of the influence of the ethical conceptual apparatus used in the framework of a particular approach on the stigmatization of certain groups of patients. The phenomenon of self-organization of patients with orphan diseases and the creation of public clusters (biosocial loci) in order to ensure their own rights to protect their health in the context of the genetization of society and the lack of public resources to meet the needs of healthcare is also investigated.

It is concluded that the ethical principle of convergence of efforts is of relevance for solving the problems of orphan diseases. It causes a resonance and consequences both in relation to the formation of scientific knowledge and specific political steps to protect the rights of patients with orphan diseases. It is aimed at providing information support to patients and their families, exchanging databases of various diseases, forums for doctors and patients; creation of models for informing about orphan diseases, based not on the analysis of statistical data, but on the individual differences in the course of the disease, analysis of personal life experience with the disease; the formation of an extensive network of charitable organizations that raise funds to provide patients with essential medicines, as well as global multinational programs in the field of drug development; self-organization of patients; proactive integration of genetic technologies into the healthcare system with the goal of timely diagnosis of orphan diseases and the choice of treatment pathway; analysis of the problems of orphan diseases not only within the framework of the medical model of health and disability, but also the social model.

Keywords
orphan diseases, genetisation of society, biosociality, regulatory approaches to the problem of orphan diseases, stigmatization, discrimination
Received
12.12.2019
Date of publication
12.12.2019
Number of purchasers
78
Views
2277
Readers community rating
0.0 (0 votes)
Previous versions
S023620070007678-2-1 Дата внесения правок в статью - 25.11.2019
Cite   Download pdf

References

1. Assael B.M. D'yavol'skii gen [Devilish Gene]. St. Petersburg: “Ostrovа” Charity Fund, 2017.

2. Bogomyagkovа E.S. Povorot k biologii: perspektivy razvitiya sotsiologicheskogo znaniya [Turn to Biology: Development of Sociological Knowledge]. Bulletin of St. Petersburg University. Sociology. 2018. Vol. 11, iss. 1. P. 35–50. URL: https://doi.org/10.21638/11701/spbu12.2018.104 (date of access: 28.09.2019).

3. Voronin A.A. Moskovtsev G.N. Rets. na kn.: YA dyshu, ili Mukovistsidoz iznutri (St. Petersburg, 2013) [Book Review: Moskovtsev G.N. I Breathe, or Cystic Fibrosis from the Inside (St. Petersburg, 2013)]. Chelovek. 2013. N 1. P. 182–184.

4. Guzeev G.G. Aktual'nye problemy mediko-geneticheskogo konsul'tirovaniya [Actual Problems of Medical Genetic Counseling]. Osnovy prenatal'noy diagnostiki [Basics of Prenatal Diagnosis], ed. by E.V. Yudina, M.V. Medvedev. Moscow: RAVUZDG: Real time, 2002.

5. Ivanyushkin A.Ya., Popova O.V., Lapin Yu.E., Smirnov I.E. Metodologicheskiye voprosy razrabotki eticheskogo kodeksa vracha-genetika [Methodological Issues of Developing an Ethical Codex of a Geneticist]. Russian Pediatric Journal. 2013. N. 5. P. 57–62.

6. Eurordis. The Voice of Rare Disease Patients in Europe. URL: https://www.eurordis.org (date of access: 28.09.2019).

7. Gericke C.A., Riesberg A., Busse R. Ethical Issues in Funding Orphan Drug Research and Development. J. Med. Ethics. 2005. Vol. 31. P. 164–168. URL: http://jme.bmj.com/cgi/content/full/31/3/164 (date of access: 28.09.2019).

8. Hedgecoe Ad. Geneticization, Medicalisation and Polemics. Medicine, Healthcare and Philosophy. 1998. Vol. 1. P. 235–243.

9. Hüsing B., Hartig J., Bührlen B. et al. Individualisierte Medizin und Gesundheitssystem. TAB-Arbeitsbericht. 2008. N 126. URL: http://www.tab-beim-bundestag.de/de/publikationen/berichte/ ab126.html (date of access: 28.09.2019).

10. Lippman A. Led (astray) by Genetic Maps: the Cartography of the Human Genome and Health Care. Social Science and Medicine. 1992. N 35 (12). P. 1469–1476.

11. Miller P.S., Levine R.L. Avoiding Genetic Genocide: Understanding Good Intentions and Eugenics in the Complex Dialogue Between the Medical and Disability Communities. Genet Med. 2013. Feb., N 15(2). P. 95–102. URL: http://www.ncbi.nlm.nih.gov/pmc/ articles/PMC3566260/ (date of access: 28.09.2019).

12. Rabinow P. Artificiality and Enlightenment: From Sociobiology to Biosociality. Essays in the Anthropology of Reason. Princeton, NJ: Princeton Univ. Press, 1996. P. 91–111.

13. TDR. For Research on Diseases on Poverty. URL: https://www.who.int/tdr/en/ (date of access: 28.09.2019).

Comments

No posts found

Write a review
Translate