International Bioethics and Genetics

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Table of Contents

Introduction
Bioethics Genetic Manipulation and Personal Data
Discussion
Conclusion
References

Introduction

Genetic discrimination remains a significant societal threat whose destructive effect is to create unequal opportunities for people based on their genetic profile. Genetic discrimination adversely affects people in employment and health insurance contracts: in pursuit of self-interest, vested interests create knowingly unequal conditions for vulnerable populations. In support of the 2001 ECOSOC resolution, national governments across North America have developed their own legislative projects to protect people’s rights. These include the targeted GINA Act from the U.S., which has already been shown to be effective for protection, the GNDA Act from Canada, which was just recently enacted, and an amendment to Mexico’s FLPED law. Each of these initiatives empowers genetically vulnerable groups legally and guarantees protection from discrimination. The use of such projects in jurisprudence is essential, as it allows for a transition from the theoretical foundations of protection to the actual practice of security safeguards. This means that patients’ personal data about their genetic profile have privacy, and forcing individuals to perform tests for the needs of employers or insurance companies is illegal. This essay examines national initiatives and proposals in detail and explores a civil rights program to protect against genetic discrimination by employers and insurance companies.

Bioethics Genetic Manipulation and Personal Data

In genetic engineering, one of the critical issues remains the study of bioethical considerations that regulate issues of personal data and patient confidentiality. For the current stage of medical development, genetic, epigenetic, and genomic interventions are not a rare practice, but on the contrary, it is quite actively used to study the patient’s genetic profile (Pujol et al., 2020). Becoming more personalized, the modern clinical practice provides a virtually individualized approach to treatment based, among other things, on the patient’s genetic portrait. In particular, this makes it possible to establish hereditary susceptibility to specific diseases, the potential for mutations, and the presence of preexisting nucleotide abnormalities. Although this is an excellent preventive and targeted treatment strategy because the cause and effect of pathogenesis are almost genuinely known, the personalized approach has a downside. This concerns the possibility of genetic discrimination, in which an individual receives unequal, partial care based only on the presence of a genetic mutation that increases the possibility of inherited disease. More specifically, it assesses the possibility of unequal treatment by employers or insurance companies but does not cover public antipathy toward such people since the latter is not legally regulated.

For example, if a company employee has a proven genomic abnormality that increases their chances of having sickle cell anemia, Down syndrome, or inherited cancers, this could cause-specific treatment by employers or insurance companies. There have been known cases where, because of genetic abnormalities, insurance companies have denied service to patients or offered them disadvantageous packages (Alexander, 2019). Texas-based health insurer GWG Life collected saliva samples from their customers in order to build their genetic profile and thus offer cheaper packages for epigenetically healthier individuals (Dupras et al., 2018). In addition, it has become increasingly reported that during COVID-19, patients with genetic mutations whose records were in medical records began to receive worse clinical care (Field et al., 2021). The above scenarios are the genetic discrimination that people are subjected to at work, in medical and insurance organizations, and in society every day.

Genetic discrimination is a problem of bioethical significance in which a patient’s confidential rights are violated to create favorable conditions on the part of the person or company who is the subject of the discriminatory practice. Clinical technologies continue to improve, and the progressivity of genetic manipulation can be expected to make a qualitative leap in the next decade. Such expectations, in turn, raise concerns about the likelihood of increasing genetic discrimination against individuals based on their genomic profile but not on merit, skills, and knowledge. With this in mind, major international agencies and national governments are developing initiatives to protect the private rights of such patients. One iconic, such body is ECOSOC, a department of the United Nations. In a 2001 resolution, ECOSOC calls on states to ensure that citizens are fully protected from genetic discrimination and protect the private rights of the public in cases of genetic testing (Belova, 2013). From a bioethical perspective, this includes obtaining full and informed consent for genomic analyses and complete protection of the data collected.

In nearly twenty years of active legislative developments and initiatives released under the pressure of the 2001 Resolution, many positive changes have been achieved. Indirect evidence of this is the removal of the sub-item “Genetic privacy and non-discrimination” from the ECOSOC agenda by the 2012 Resolution (UN, 2012). In this context, the GINA Act, quoted by the U.S. Congress in 2008 (Suter, 2018), draws particular attention. Passed by President Bush, GINA covers the need to protect people in two sections: health insurance and employment. Section I postulates that the use of an individual’s genetic information to make decisions about insurance packages is prohibited. Thus, if a patient has a proven genetic abnormality, GINA strictly prohibits the use of that data for insurance decisions. In Section II, the law postulates a prohibition against discriminating against an employee in promotions, career advancement, hiring, or other corporate decisions based on genetic information. Thus, according to GINA, an employee with a predisposition to hereditary cancer will not be treated unequally by the firm’s management.

In contrast to the U.S., Canada has comparatively recently initiated a law against genetic discrimination, with its public acceptance still the subject of debate. In particular, the 2017 GNDA prohibits Canadian employers from requiring any genetic data from employees that might be valid for specific decisions (le Ministre de la justice, 2021). In addition, the GNDA imposes restrictions on the ability of interested parties to require an individual to undergo screening. Since its adoption in 2017, however, several public outcries, including from insurance companies, did not support its introduction, which delayed the implementation of the GNDA. It was not until 2020 that the Supreme Court of Canada fully embraced the law nationally, opposing a cabinet minister who had previously refused to support the initiative (Stefanovich, 2020). Thus, Canada’s jurisdiction protects individuals from genetic discrimination.

As another third of the national representations on the continent of North America, the Mexican government has also taken several steps toward rejecting discrimination. Mexico already had a FLPED law passed back in 2003, which prohibited discrimination and guaranteed social and cultural equality (Brogna, 2014; Joly et al., 2020). Only recently has the Mexican government expanded FLPED with an amendment to the genetic discrimination waiver from insurance companies and employers. In addition, a separate GSA law was passed in 2011 to ensure that information collected in genomic research is subject to the protection of private rights, and therefore cannot be used without the client’s consent (Rojas-Martínez, 2015). Thus, there have been some positive initiatives in Mexico to protect individuals’ private rights against genetic discrimination.

This is not to say that the initiatives created are entirely perfect since genetic discrimination has not ceased to be a threat, although its frequency has probably decreased. For example, GINA does not cover cases of companies with up to fifteen employees, which means that no one is safe from discrimination in ultra-small businesses. In addition, GINA does not protect against discrimination in insurance solutions other than medical, which means that such forms of unequal treatment may persist in insurance plans related to real estate or disability. In addition, private companies often circumvent federal law: this is true of Mountain Grove, Mo. of the United States, which required applicants to fill out a medical history before hiring (EEOC Headquarters, 2016). In that case, a federal judge ruled under GINA that Mountain Grove, Mo. violated the law. An exciting court case was handled in 2015 when Atlas Logistics Group Retail Services forced two employees to submit DNA samples to determine the identity of an employee who was “emptying” in a food warehouse (Suter, 2018). In that case, the plaintiffs (employees) sued the employer and won, further demonstrating the effectiveness of GINA in protecting the genetic rights of citizens.

Discussion

In underscoring the above, we must once again conclude that protecting individuals’ privacy, civil rights, and freedoms with respect to genetic manipulation is a sensitive issue. Medical technology continues to improve exponentially, which means that the threat of disadvantageous use of genetic information will soon become even more pressing. On the other hand, the number of mutations and hereditary anomalies seems to be increasing among humanity, which may be due to either an increasing population or a slow evolutionary change in the gene pool of Homo sapiens. The combination of these effects leads to the possibility that genetic discrimination may become part of the everyday practice of the future, and thus there is an urgent need to address this issue legally.

The national and international initiatives discussed above are effective practices for addressing the problem at the federal level. As has been shown, it does provide protection for individuals against the illegal actions of employers and insurance companies. In addition, it should be said that it creates a positive environment in which the public can be assured that they have safeguards against this type of discrimination. However, the societal stigma of people with genetic mutations is hardly solved by national laws alone: people with hereditary diseases can still be under societal pressure (Oudin-Doglioni et al., 2019). Although GINA, GNDA, and FLPED provide a foundation for combating organizational discrimination, more work is still needed to address the public bioethical problem.

Conclusion

In conclusion, genetic discrimination is a significant societal problem that leaves people with predispositions to inherited disease vulnerable. Modern medicine indeed continues to progress, which means that innovative diagnostic technologies are becoming more accessible. It is very likely that doctors will be able to determine the complete genetic profile of an embryo in the next few years, which will be a revolution for health care. This will improve the human gene pool by preventively deciding to abort those fetuses that are guaranteed to have health problems. For adults, this works even more obviously: by having their own genetic profile, the individual will be able to manage their health and monitor their quality of life, eliminating deleterious factors. However, improving clinical agendas has the opposite effect: it raises problems of genetic discrimination.

The stigmatization and unequal treatment of people who have hereditary abnormalities are critical to society. People are discriminated against by employers and insurance companies, which refuse to cooperate or create knowingly disadvantageous conditions of cooperation for citizens. In an attempt to minimize the destructive effects, the world community developed a resolution banning genetic discrimination. This initiative prompted national legislative developments to curb such a problem. It was considered that the governments of the USA, Canada, and Mexico have been implementing the practice of legal protection of citizens against violation of laws for several years. This includes initiatives such as GINA (US), GNDA (Canada), and FLPED (Mexico). It has also been shown that these laws have already been applied in litigation, which means that they have proven effectiveness. More specifically, two court cases were examined in which commercial companies had demonstrated discrimination against employees: this involved forcing the latter to surrender genetic material, which made sense for management purposes. In an attempt to create favorable conditions for themselves, such companies opposed national laws. As a consequence, the courts ended up in favor of the plaintiffs, forcing the companies to pay large compensations. However, it is still a big question to root out genetic discrimination at the societal level, which would fully protect vulnerable groups from the oppression of societal pressures.

References

Alexander, A. (2019). Peeking at your genes can raise red flags for life insurers. Bloomberg Law.

Belova, G. (2013). Some Comments on Human Rights and Bioethics. Balkan Social Science Review, (1), 39-49.

Brogna, P. (2014). Los juegos de verdad en el discurso jurídico de la igualdad: Notas sobre los derechos humanos y el derecho a la no discriminación de las personas con discapacidad [PDF document]. Web.

Dupras, C., Song, L., Saulnier, K. M., & Joly, Y. (2018). Epigenetic discrimination: emerging applications of epigenetics pointing to the limitations of policies against genetic discrimination.Frontiers in Genetics, 9, 202-208.

EEOC Headquarters. (2016). Court grants judgment in favor Of EEOC in disability and genetic discrimination case. EEOC.

Field, R. I., Orlando, A. W., & Rosoff, A. J. (2021). Genetics and COVID-19: How to Protect the Susceptible.Trends in Genetics, 37(2), 106-108.

Joly, Y., Dupras, C., Pinkesz, M., Tovino, S. A., & Rothstein, M. A. (2020). Looking beyond GINA: policy approaches to address genetic discrimination. Annual Review of Genomics and Human Genetics, 21, 491-507.

le ministre de la Justice. (2021).Loi sur la non-discrimination génétique [PDF document].

Oudin-Doglioni, D., Gay, M. C., Lehougre, M. P., Arlet, J. B., & Galactéros, F. (2019). Les représentations de la drépanocytose comme déterminants de l’observance thérapeutique.Annales Médico-Psychologiques, Revue Psychiatrique, 177(6), 517-525.

Pujol, P., Fodil-Chérif, S., Mandel, J. L., Baertschi, B., Sanlaville, D., Zarca, D.,… & Geneviève, D. (2020). Réflexions éthiques sur le dépistage génétique préconceptionnel en population générale: le débat français et l’avis de la Société Française de Médecine Prédictive et Personnalisée. Ethics, Medicine and Public Health, 12, 1-12.

Rojas-Martínez, A. (2015). Confidentiality and data sharing: vulnerabilities of the Mexican Genomics Sovereignty Act.Journal of Community Genetics, 6(3), 313-319.

Stefanovich, O. (2020). Supreme Court of Canada upholds genetic non-discrimination law. CBC Canada.

Suter, S. M. (2018). GINA at 10 years: The battle over ‘genetic information’ continues in court.Journal of Law and the Biosciences, 5(3), 495-526.

UN. (2012). Resolution adopted by the Economic and Social Council [PDF document]. Web.

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