Genetic Information in the Light of Genetic Discrimination: the Experience of Foreign States

Introduction

Genetic information is often used for discrimination purposes. For example, the results of genetic testing can reveal a high risk of developing a disease in an apparently healthy person, which will require expensive medical care. Such information may affect decisions on the employment of a candidate for a job or the conditions for concluding an insurance contract (Gadzhiev & Gusov, 2017). Canadian media report frequent cases of discrimination against applicants by insurance companies, who base their calculations on test results predicting the potential for hereditary diseases. Some countries (the USA, Australia, EU member states) have adopted relevant legislative acts on counteracting discrimination on the basis of genetic status (Feldman, 2012).

Methods and materials

The international legal framework for combating genetic discrimination is formed by the following documents:

– UNESCO Universal Declaration on the Human Genome and Human Rights, 1997;

– UNESCO International Declaration on Human Genetic Data, 2012;

– Council of Europe Convention on the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine ("Oviedo Convention"), 1997;

– Additional Protocol to the Convention on Human Rights and Biomedicine on Genetic Testing for Medical Purposes, 2008.

These documents include a general prohibition of genetic discrimination and stigmatisation based on genetic status (Adams, Donnelly, & Macdonald, 2015). At the same time,

the difference between stigma and discrimination can be seen in the fact that stigmatisation is not necessarily associated with a restriction in the enjoyment of individual rights. Stigmatisation, in particular, can take the form of words or actions that impose a stigma on a person or a group of persons due to some of their known or supposed features (Tiller, Otlowski, & Lacaze, 2017).

Specification of the spheres of dissemination of discriminatory practices was carried out at the level of domestic regulation. Genetic discrimination concerns three main areas: employment, insurance, consumer services. Issues related to combating discrimination based on the genetic status of the most vulnerable groups of persons (indigenous peoples, ethnic communities, etc.) require a special attention. At the same time, two main models of legal regulation of genetic discrimination, namely, American and Australian are presented at the national level (Gerards, Heringa, & Janssen, 2005).

The American model of legal regulation of genetic discrimination presupposes the issuance of a single comprehensive legal act on these issues. In 2008, the USA passed the Genetic Information Nondisclosure Act (GINA), which limits its considerations to genetic testing in the context of health insurance and employment (Flynn, Cusack, & Wallen, 2019). At the same time, the provisions of law do not apply to life insurance, disability and long-term care insurance. This act is primarily aimed at determining the cases in which genetic testing for research purposes can be performed. In addition, it is stated that reference to ‘genetic information of an individual’ also includes a foetus or embryo for regulatory purposes (Keogh & Otlowski, 2013). In addition, the law prohibits the adjustment of premiums in connection with certain genetic information as part of a collective insurance agreement. The act provides an opportunity for workers to lodge complaints against their employers in case of discriminatory treatment based on genetic status. At the same time, the document discloses cases and conditions when mandatory genetic testing may be required (Motoc, 2009). In particular, it may be necessary for ‘genetic monitoring of the biological effect of toxic substances in the workplace’, subject to the requirement to ensure confidentiality (Steck & Hassen, 2019).

The Australian Genetic Discrimination Legal Model is an interconnected system of regulations containing provisions to counter discrimination on the basis of genetic status for various social groups. In 1992, the Commonwealth of Australia passed the Disability Discrimination Act 1992 containing a similar provision. At the same time, the regulations allow for discrimination in relation to the insurance sector if there are sufficient grounds. Insurers have the right to use information on the results of genetic testing even in the absence of obvious signs of the disease in order to refuse insurance payments or increase insurance premiums in the case of life, income, travel insurance. However, the legislator emphasises that the discriminatory attitude must be reasonably justified (Rothstein, 2018). The insurers are obliged to consider all possible measures to reduce the risk of an insured event, including constant medical supervision or surgery. This requirement distinguishes between legitimate (but ethically controversial) discrimination based on genetic status within the scope of applicable law, and unlawful genetic discrimination, which suggests that the insurer’s behaviour violates regulations (Chapman, Mehta, Parent, & Caplan, 2020).

Legal regulation is formed at three levels: federal, state, and local. The federal level is represented by the following main acts affecting aspects of discrimination in the field of insurance: the Sex Discrimination Act 1984, the Race Discrimination Act 1975 and the above-mentioned Disability Discrimination Act 1992. Moreover, the Acts of 1984 and 1992 include special provisions on the admissibility of discrimination in the field of insurance in the presence of certain circumstances. The 1975 Act does not contain such a provision. At the same time, it limits the information that insurers are allowed to use in underwriting applications in order to ensure that payments are received if an insured event occurs. Thus, insurers may not differentiate between applicants on the basis of race even though life expectancy of indigenous Australians is known to be noticeably lower than that of the Caucasian population as a whole (Hao, Macdonald, Tapadar, & Thomas, 2016).

Regarding the legislation at the state and local level, in each case it is a separate regulation in the field of insurance and non-discrimination (Lemke, 2005). Not surprisingly, states and territories adopted the provisions of the 1992 Insurance Discrimination Act under certain conditions. However, this does not exclude the possibility of conflicts of laws adopted at various levels (Dupras, Song, Saulnier, & Joly, 2018).

Results and discussion

Genetic discrimination concerns three main areas: employment, insurance, services. The issues of discrimination on the basis of the genetic status of the most vulnerable groups of the population, which include ethnic communities and indigenous peoples, form a separate category (Gammon & Neklason, 2015). Special attention should be paid to the following aspects of discriminatory practices:

– use of the so-called ‘incomplete’ informed consent for biomaterials from ethnic communities;

– lack of consideration of traditions and customs of peoples in the implementation of manipulations with biomaterial and genetic data;

– protection of national identity and counteraction to the exploitation of the genetic material of ethnic communities by representatives of the scientific community;

– unfair distribution of remuneration (benefits, preferences) from the use of genetic information (Underhill-Blazey & Klehm, 2020).

The practice of Australia is of particular significance in this context. Australian Aborigines have long participated in scientific research whose object was to obtain their genetic information. Moreover, the objects of research were not only limited to biomaterials of living people, it also included genetic information extracted from the remains of deceased representatives of indigenous peoples stored in museum collections. The case of Attorney-General v. The Trustees of the British Museum considered the issue of the possibility of transferring genetic material on display at the London National Museum of History to Australia for the purpose of burying the remains of Tasmanian aborigines in accordance with traditional rites (Taylor, Treloar, Barlow-Stewart, Stranger, & Otlowski, 2008).

Representatives of the Historical Museum’s board of trustees argued as part of the dispute that the return of Aboriginal remains after scientific testing should aim to strike a balance between what the trustees themselves believed were ‘two opposing views on how to proceed. On the one hand, the museum considered the possibility of returning the remains to the country of origin; on the other hand, it seemed necessary to use this invaluable and unique resource for the purposes of scientific research’. The board of trustees were determined to extract DNA samples from the remains, as they “represent the human population at a time when Tasmania was isolated from the rest of the world, and such scientific information could allow future generations to learn more about how their ancestors lived, where they came from." At the same time, the board of trustees recognised the unlawfulness of the seizure of the remains from the Tasmanian aborigines, which created the legal basis for their return (Taylor, Treloar, Barlow-Stewart, Stranger & Otlowski, 2008).

Due to the length of the proceedings and the increasing legal costs, the Museum’s Board of Trustees agreed to use mediation to resolve the dispute, as suggested by a High Court judge. Each of the parties appointed a mediator who jointly tried to bring the parties to an agreement by balancing their interests. The Museum pursued the need to protect scientific interests, considering the collection of data and the preservation of genetic material as fundamental for future research. According to Tasmanian traditions, the Aborigines, on the other hand, wanted the remains to be preserved in their original form, and opposed "any physical interference and the permissibility of desecration of the remains in the future". Ultimately, the mediator managed to convince the parties to agree to a mutually acceptable compromise. Aboriginal people recognised the importance of the Museum preserving the collected DNA collection, and the Museum staff, in turn, agreed that the remains and all related documentation should be transferred to the Tasmanian medical institution (Otlowski, Taylor, & Bombard, 2012).

Thus, as well as raising the question of who owns the DNA collection, the process invoked a consideration of how to ‘balance’ the museum’s ownership of biomaterials and the determination of the Tasmanian Aboriginal Study Center to protect “Aboriginal cultural and spiritual beliefs”. Under Australian common law, human remains cannot be subject to ownership (the ‘zero-ownership rule’) unless the object has been transformed to the point where it can be considered a work of art. At the same time, at the international legal level, the importance of obtaining the consent of indigenous peoples when handling the human remains of their ancestors is recognised (Otlowski, Taylor, & Bombard, 2012).

The 2007 United Nations Declaration on the Rights of Indigenous Peoples explicitly states that ‘indigenous peoples have the right to respect and revitalise their cultural traditions and customs’ and that ‘states provide remedies through effective mechanisms, which may include restitution, developed in collaboration with indigenous peoples, with regard to their cultural, intellectual, religious and cult property, alienated without their free, prior and informed consent or in violation of their laws, traditions and customs’ (Article 11). The internationally proclaimed need to ensure the protection of the rights and legitimate interests of indigenous peoples can become an effective tool in countering their discrimination, including with respect to the right to repatriate the remains of their ancestors, the right to use DNA materials, in particular to interfere with them for scientific purposes only with indigenous peoples’ consent (Slaughter, 2008).

Discriminatory practices often manifest themselves in relation to the use of ‘incomplete’ informed consent for biomaterials from representatives of ethnic communities. Noteworthy in this context is the American case ‘Havasupai Tribe v. Arizona Board of Regents’, which addressed the use of DNA samples from tribal representatives for purposes other than the initial collection of genetic data. The case was resolved in favour of the tribe: tribal members received $700,000 in direct compensation, funds for the tribal clinic and school, and the return of DNA samples. It was agreed that the genetic material was to be disposed of in a special ceremony (Sorokina & Ponomareva, 2020).

The Havasupai case challenged the concept of informed consent, especially for vulnerable populations, pointing out that extended consent forms and incomplete disclosures did not lead to a full understanding of the research needed to make a truly informed decision to participate in health projects. It also raised the issue of the need to conduct research with the participation of indigenous peoples in a fair and non-discriminatory manner, including addressing the issue of how to deal with ‘old’ DNA samples and ‘old’ informed consent when working with the modern generation of participants in genetic research. While DNA samples have unquestionable value, they become less usable as they ‘mature’, and long-time informed consent prevents the use of samples today. The Havasupai case also raises the question of how before legal community should treat the original, ‘old’, but valuable DNA samples.

Legal regulation of the use of genetic information of the most vulnerable groups of the population in scientific research requires a special approach from the point of view of ensuring a balance of regulation and traditions, ethics and law. The law enforcement practice of Australia and the United States in this matter clearly demonstrates the emerging tendency to take human rights (the rights of indigenous peoples) into account when deciding on the transfer of biomaterials and their re-use in scientific research (Sorokina & Ponomareva, 2020).

Conclusion

The development of legal regulation of genetic discrimination requires a special approach in terms of ensuring a balance between legal regulation and traditions, ethics and law. Considering the issue of the possibility of implementing the best foreign practices into Russian legislation, it is important to emphasise that the relations arising from countering discrimination on the basis of genetic status are not currently reflected in the realities of the Russian Federation’s legislation. Amendments to the legislation should take account of emergent social relations and practical issues related to their regulation. Until such time, the legal community can limit itself to the formulation of norms and principles (including general prohibitions such as that of genetic discrimination) enshrined in a number of international treaties in the field of genomic research, which may in the near future be ratified by the Russian Federation (in particular, the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: 1997 Convention on Human Rights and Biomedicine).