PREDICTIVE MEDICINE: THE RIGHT TO PRIVACY AND PROTECTION FROM DISCRIMINATION

Terzi O. O., 
Ph.D., Senior Lecturer, Department of Social Medicine,
Medical Law and Management
Odessa National Medical University

Genetic data makes it possible to predict with a high probability the future health status of a healthy person at the time of the survey and, therefore, can be used as grounds for discrimination by third parties.
The issue 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 Nations and the World Health Organization (WHO).
The purpose of the article is to analyze the legal 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, currently there is no single legal regulatory framework for the relations in this area.
Commissions and advisory bodies of international organizations have been trying to codify the ethical evaluation of genetic tests in their recommendations. Nowadays, the government shall be liable for combating genetic discrimination and the threat of genetic confidentiality.
Recommendation R (92) 3 of the Council of Europe Committee of Ministers on genetic testing and screening for the purpose of health protection contains the principle of professional secrecy, according to which persons engaged in genetic information shall comply with professional rules of conduct and rules established by national legislation aimed at preventing the abuse of such information and, in particular, with the obligation to adhere to strict confidentiality. Personal information obtained by genetic testing is protected on the same basis as other medical data, according to the rules for the protection of medical data.
The principle of confidentiality of medical information is a strict legal obligation of the physician and can only be lifted for a very limited number of exceptions, namely, subject to strict legal conditions (required or permitted by law and / or after obtaining consent of the patient).
There are cases where the non-disclosure of the results of a genetic test can threaten the life or health of other family members. According to Art. 18 of the 2008 Optional Protocol to the Convention on Human Rights and Biomedicine concerning genetic testing for medical purposes, the patient should be provided with preliminary information on the significance of the results of genetic testing for his family members in such case.
Confidentiality in the exchange of data about the genomes of individuals shall also be respected because of possible discrimination, since people are not equal in their biological capacities due to the uniqueness of combinations of gene variants.
There are three areas of application of the discriminatory approach:
- insurance (to prevent large risks from insurance companies, which generate their large payments in the future, and "unfair load" on all insured and insurers);
- employment;
- family life (when choosing a spouse or in case of adoption of children).
The recommendations on genetic screening and genetic testing proposed by WHO in 1997 set the principle of privacy protection in this way: test results should not be disclosed to employers, insurance companies and other third parties without the consent of the patient in order to prevent discrimination.
Art. 6 of the 1997 Universal Declaration on the Human Genome and Human Rights notes that, based on genetic characteristics, no one can be subjected to discrimination, purpose or result of which consist in an attack on human rights, fundamental freedoms and human dignity.
Protection against discrimination is enshrined at the level of the organization of the Commonwealth of Independent States in this way: the use of data obtained as a result of the application of genetic technologies with the aim of discrimination in the field of labor relations, insurance and other spheres of life should be rejected (Resolution of the Interparliamentary Assembly of the member states of the Commonwealth of Independent States No. 29-12 "On recommendations "On ethical and legal regulation and safety of genetic medical technologies in the CIS member states"").
However, the practice of obtaining access to health-related data stored by a family doctor or other healthcare provider or medical center with the consent of the insurance claimant does not contradict this obligation of medical confidentiality of medical professionals under the laws of some countries.
In addition, it should not be forgotten that in some countries (for example, in France), only the patient can report to the insurer the relevant information from his or her medical file, since the physician is not allowed to report to the insurer any information related the patient even with the consent of the latter.
Currently, in most developed countries, genetic discrimination is restricted or completely prohibited at the legislative level due to the uncertainty of the action of potentially harmful variants of the gene on human health. Asymptomatic carrier of such variants falls into the risk group, but the pathology itself may not develop. The possible cause of such uncertainty is the complex networks of interacting genes that are unique to each person.
The following national approaches to solving the problem of using genetic information in the field of insurance can be distinguished:
1) the prohibition by legislation;
2) restriction by law:
- for certain types of insurance;
- if the insured amount is lower than the established level;
3) moratorium (voluntary agreement between insurers not to use genetic data).
In 2010, the Forensic Genetics Policy Initiatives (FGPI) was created as a joint initiative by GeneWatch UK, Privacy International and The Council for Responsible Genetics. This project monitors the laws of the states regarding the restriction of the use of genetic information, and details how genetic data can be used to violate human rights.
The United States a series of statutes help to protect people from genetic discrimination at the state-level together with Anti-Discrimination Report on Genetic Information at the federal level. The latter was adopted in 2008 and prevents discrimination from health insurance and employers, but does not apply to life insurance or long-term insurance.