DOI: https://doi.org/10.25040/medicallaw2018.01.065

Med. pravo., 2018; 1(21): 65-74

UDС: 340

TERZI OLENA OLEKSANDRIVNA 

candidate of legal sciences, senior lecturer of the department of philosophy and bioethics of the Odesa National Medical University

Predictive Medicine: Right to Confidentiality and Protection Against Discrimination

This article is devoted to questions of protecting the right to confidentiality
in the implementation of predicative medicine. The article deals with the
consolidation of this right at the national and international level. The
issue of genetic discrimination and the regulation of the prohibition of such
discrimination at the national, international and CIS level was explored. The
approaches to solving the problem of the use of genetic information in the
field of insurance in such countries as Belgium, the Netherlands, Portugal,
the United Kingdom, the USA, Canada are analyzed.
Genetic data makes it possible to predict the future health status of a
healthy person at the time of the survey with a high probability and can
therefore be used as grounds for discrimination in the use of third parties.
The question of the protection of personality, physical and intellectual
integrity of a person in the conditions of the progress of biology, medicine
and biochemistry has repeatedly become the subject of consideration in the
reports of the Secretary-General of the United Nationsand the World Health
Organization.
The purpose of the article is to analyze the right regulation of predictive
medicine through research in this context the right to privacy and protection
against discrimination. As predicative medicine is a rather new branch of medicine, there is currently no single regulatory framework for regulation of relations in this area. Commissions and advisory bodies of international organizationsare trying to codify the ethical evaluation of genetic tests in their recommendations. At present, the government is responsible for combating genetic discrimination and the threat of genetic confidentiality.

Key words: predictive medicine, genetic data, confidentiality, genetic
discrimination, insurance.

Reference list:

1.      Konstytutsiya Ukrayiny, vid 28.06.1996 254k/96-VR. Vidomosti Verkhovnoyi Rady Ukrayiny (VVR). 1996. 30. 141 st. Rerievied from zakon5.rada.gov.ua/laws/show/254 %D0%BA/96-%D0%B2%D1%80

2.    Osnovy zakonodavstva Ukrayiny pro okhoronu zdorovya. Zakon Ukrayiny vid 19.11.1992 r. 2801-XII Rerievied from http://zakon3.rada.gov.ua/laws/show/2801-12/print1477024305397066

3.    Recommendation No. (92) 3 of the Committee of Ministers to member states on Genetic Testing and Screening for Health Care (Adopted by the Committee of Ministers on 10 February 1992 at the 470th meeting of the Ministers Deputies) Rerievied from: https://rm.coe.int/16804e913a

4.    Zahalna deklaratsiya pro henom lyudyny ta prava lyudyny, OON, YuNESKO, 11.11.1997. Rerievied from http://zakon2.rada.gov.ua/laws/show/995_575

5.    Consultation Document on Predictivity, Genetic Testing and Insurance, Elaborated by the Steering Committee on Bioethics. DH-BIO/INF (2012). Rerievied from www.coe.int/t/dg3/healthbioethic/Source/Final %20E%20consult%20doc.pdf

6.    Additional protocol to the Convention on human rights and biomedicine, concerning genetic testing for health purposes. 2008 Rerievied from http://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/203

7.    Pochemu nash myr takov, kakov on est. Pryroda. Chelovek. Obshchestvo. [sbornik] cost. A. Aleksenko AST. CORPUS. Moskva, 2015. Rerievied from https://7lafa.com/book.php?id=158385&page=14

8.    Proposed International Guidelines on Ethical issues in Medical Genetics and Genetic Services. Report of WHO Meeting on Ethical Issues in Medical Genetics. Geneva, 15–16 December 1997. World Health Organization. Human Genetics Programme. 15 p.

9.    O rekomendatsyyakh Ob etyko-pravovom rehulyrovanyy y bezopasnosty henetycheskykh medytsynskykh tekhnolohyy v hosudarstvakh uchastnykakh SNH. Postanovlenye Mezhparlamentskoy assambley hosudarstv uchastnykov Sodruzhestva Nezavysymykh Hosudarstv. 29-12. Rerievied from https://www.lawbelarus.com/039923

10. Law of 25 June 1992 on Terrestrial Insurance Contracts. Belgium. International Digest of Health Legislation 1994; 45(2). 191 Rerievied from https://repository.library.georgetown.edu/handle/10822/526011

11. Portugals Genetic Information Law. (Law 12/2005, 26 Jan.) Jorge Sequeiros. IBMC, Univ. Porto. ESHG (WS10), 14 Jun 2010 Rerievied from https://www.eshg.org/fileadmin/www.eshg.org/documents/Europe/LegalWS/Portugal_Law-UnofficialEnglishTranslation.pdf.

12. Medical Examinations Act (1997). Netherlands. Staatsblad, 1997-08-21. No. 365, p. 1 Rerievied from http://www.ilo.org/dyn/natlex/natlex4.detail?p_lang=en&p_isn=68977&p_country=NLD&p_count=2273

13. Insurance, privacy and the Concordat and Moratorium. Genetic Alliance UK. Last reviewed 12/05/2016 Rerievied from http://www.geneticalliance.org.uk/information/living-with-a-genetic-condition/insurance-privacy-and-the-concordat-and-moratorium/

14. Henetycheskaya dyskrymynatsyya / Y. Behtyn. 09.08.2016 Rerievied from https://www.vedomosti.ru/opinion/articles/2016/08/08/652204-geneticheskaya-diskriminatsiya

15. Genetic Discrimination. National Human Genome Research Institute. Last Updated: April 20, 2017 Rerievied from https://www.genome.gov/10002077/

16. Khendel N. V. (2014) Konstytutsiyno-pravovi zasady realizatsiyi prava na medychnu dopomohu v Ukrayini. Ukrayinskyy chasopys mizhnarodnoho prava: naukovo-praktychnyy zhurnal. 3. p. 185–189.

17. Khendel N. V. (2014) Mizhnarodno-pravove rehulyuvannya spivrobitnytstva derzhav u sferi okhorony zdorovya avtoref. dys. kand. yuryd. nauk. Odesa, p. 20.

18. Khendel N. V. (2014) Byomedytsynskye prava cheloveka. proshloe, nastoyashchee, budushchee. Uniwersalny i regionalny wymiar ochrony praw czlowieka. Nowe wyzwania nowe rozwiazania. T. 3. Warszawa, p. 36–49.

Full text