Introduction
An opportunity to use genetic testing as a way to predict and eliminate dangerous diseases is a unique phenomenon that was not possible several decades ago. Today, people can undergo laboratory tests to protect themselves from unwanted diagnoses and maintain confidence in the absence of health risks. However, genetic testing is associated not only with progress in medicine but also with some negative aspects, in particular, threats to privacy and discrimination. The participation of third parties in test procedures is inevitable, which, in turn, creates risks to the confidentiality of the information received and the chance of its publication. Such an outcome may entail discrimination expressed in the denial of health insurance, employment, or social condemnation. The lack of effective regulation of the issues related to confidentiality is one of the causes of the aforementioned problems. Based on the relevant background for analysis, existing problems and gaps will be considered in the context of regulatory omissions. Genetic testing is fraught with the violation of privacy and may result in discrimination in employment, poor access to healthcare services, and social censure exacerbated by stigmatization and pressure from third parties.
Threats to Privacy
From the standpoint of bioethics, medical confidentiality is based on the duty of physicians to maintain confidentiality concerning any clinical tests conducted with the participation of patients. Moreover, according to Predham et al. (2017), the information obtained can have serious consequences both for patients themselves and for their relatives in case of the identification of any violations or dangerous predispositions. As a result, obtaining individual health data by third parties is a potential reason to make sure that personal screening results are not disclosed or used in publicly available sources.
However, as practice shows, little depends on patients when the issue of confidentiality is raised. Chester (2020) analyzes potential omissions and notes that a person’s inability to conduct appropriate testing on ones own is a factor that causes doubts about privacy. The author gives an example of children’s tests and notes that parental attention is often associated with excessive activity and maybe the reason for the publication of certain data when health issues are raised (Chester, 2020). Despite the lack of a clear intention to ignore confidentiality, adults often ethical principles, thereby creating a social perception of the minimum right of a child to confidentiality. This approach exacerbates the problem and serves as a reason for revising the policy of disclosing individual health information.
Another factor associated with privacy in genetic testing is the credibility of a screening provider. Chester (2020) notes the inadequate competence of some commercial organizations providing such services and argues that any analyses should be submitted only if necessary in order to avoid the disclosure of personal data. Anonymity is questionable, particularly if the search for individual information is carried out by professional specialists. According to Pitts (2017), who provides the rationale, competent employees are able to identify specific samples with real personalities. The situation is aggravated if the results of genetic testing are controversial or unusual because this is the reason for close study and, therefore, attracting attention. Therefore, anonymity is not a guarantee in the case of evaluating the results of testing by competent specialists.
Finally, as a significant factor that exacerbates the privacy of genetic testing, one can note an underdeveloped public control system. Miller and Tucker (2017) note the existing gap in this topic and explain this by the inability to monitor personal patient screening at the state level. Conditional medical secrets between the client and the provider may be violated by the latter, and public authorities are not able to track such violations. In case the party responsible for conducting tests discloses the specific results of the genetic examinations, this may not be revealed immediately, and people who are liable for such omissions may evade liability. As a result, clients rely on the authority and professionalism of clinicians totally, thereby allowing the potentially unwanted disclosure of their individual information in case of an error or covert actions. Moreover, Cirino et al. (2019) note that many patients may be biased due to the widespread use of genetic testing. Thus, the issue of privacy is a significant aspect that requires addressing as a potential gap in modern medicine and a topic that can be resolved in case of appropriate regulation by higher authorities.
Poor Access to Healthcare Services
Although genetic testing is an officially approved procedure, screening tests may result in discrimination associated with poor healthcare delivery. In particular, individual clients may be denied obtaining health insurance based on the results of appropriate diagnostics. In addition, according to Bélisle-Pipon et al. (2019), not only patients but also members of their families may lose an opportunity to ensure their health due to the policies of individual companies. Legislative principles, as a rule, do not prohibit companies from establishing specific principles that determine the procedure for insurance registrations and payments. As a result, if an organization interacts with one of these firms, employees may be denied obtaining a corresponding social package based on the results of genetic testing. Such an outcome is obviously biased and discriminates against the human right to freely receive healthcare services. However, legislative conventions do not allow changing the situation, which, ultimately, leads to discrimination.
Despite the unambiguous medical context of such an implication, privacy issues may also arise in the topic of problems with access to health insurance. In particular, Pitts (2017) states that the Act of 1996 allowed healthcare companies to share patients’ anonymous data, which was a potentially controversial practice and lasted until 2008. Even if customers had the right to not disclose the results of genetic tests, insurance services were entitled to utilize confidential data as a tool for sale to third parties. This fact defines the possibility of maintaining privacy as being in doubt due to the intentional or accidental declassification of the relevant examinations. Despite the fact that insurance companies profit from such practices, from an ethical standpoint, the situation is ambiguous since there is no guarantee that when transmitting individual client information, it will remain completely anonymous. Ultimately, the published results may affect the decision of individual providers to deny patients their services, thereby supporting discrimination.
This scheme is the desire of health insurance companies to protect their assets from unnecessary expenses. Chester (2020) explains this mechanism as follows: a patient who undergoes genetic testing anonymously cannot be sure that his or her results will not be passed on to third parties. Subsequently, when analyzing the history of these tests, insurance companies are not ready to sign an agreement on the provision of appropriate services. The reason is the fear of clients’ dangerous diseases and, consequently, high payments to customers in the long term. As a result, individuals are either denied insurance or offered to pay a substantially larger amount compared to the standard cost. This practice can be regarded as discrimination, which is caused by the desire of insurance companies to avoid possible costs.
Given the current challenges and prejudices, the health insurance industry is biased in relation to genetic testing. Vajda et al. (2017) argue that in the USA, this gap is widespread, while in European countries where healthcare systems are socialized, significantly fewer difficulties arise. As a result, the features of insurance policies are incentives for the discrimination of clients based on the results of their genetic testing outcomes.
Discrimination in Employment
Although the use of the results of individual genetic tests by third parties is unacceptable from both ethical and legal standpoints today, such an aspect as an employment opportunity may also be affected. In particular, as Miller and Tucker (2017) note, some employers study the history of screening tests of future employees carefully and base their choice on these results. As a criterion, preferences are given to those applicants with the absence of predisposition to any genetic diseases. However, this practice is discrimination that does not allow people with a tendency for certain illnesses to count on jobs. Moreover, Miller and Tucker (2017) argue that individual employers even design dismissal programs to and include their subordinates’ genetic tests in the list of reasons for dismissal. This approach cannot be considered objective not only due to the violation of the right to labor but also from a legal perspective. According to Bélisle-Pipon et al. (2019), since 2008, American insurance companies are not entitled to transmit information about their customers without the consent of the clients. Therefore, apparent bias is a negative consequence of the violation of the privacy law.
Open discrimination based on genetic testing is ethically unacceptable, but at the same time, a common social phenomenon. Pitts (2017) provides examples of individual cases and discusses what the world can look like if biology is superior to humans. The author proposes to consider unacceptable an example of how an employee cannot obtain a job just because there are genetic risks of autism in his or her family (Pitts, 2017). Another example discusses a political campaign in which a candidate cannot expect to win due to the tendency to Alzheimer’s disease (Pitts, 2017). In addition, not only individual work prospects but also job opportunities for all family members can be significantly reduced. Predham et al. (2017) cite a situation in which relatives of a person who has experienced denial of employment based on the results of genetic testing are also discriminated against due to the same bias. The inability to count on obtaining a stable job just due to a hereditary predisposition to any ailment cannot be considered either ethically or financially sound precaution. However, precedents prove that such situations occur in the labor market.
Despite the fact that today, attention is paid to this problem, and the relevant legislative documents address the problem of discrimination in employment on the basis of genetic testing, some gaps exist. For instance, Chester (2020) considers the Genetic Information Nondiscrimination Act that aims to regulate biased practices maintained by employers in relation to subordinates with an unfavorable genetic predisposition. However, as the author notes, this document only affects companies in which the number of employees exceeds 15 people, which, in turn, opens up the possibility for small firms to coordinate HR policies on their own (Chester, 2020). Such a gap proves that there are many opportunities for intervention and correction of the current situation. In the labor market, job seekers cannot obtain the desired position due to the prejudices of employers regarding the importance of avoiding subordinates with an unfavorable genetic history. However, such an attitude does not have a reasoned justification since, regardless of the health status, any person with appropriate qualifications has the right to rely on employment. Thus, discrimination expressed in the refusal to provide a job is one of the negative implications of genetic testing.
Social Censure and Stigmatization
The consequences of discrimination based on the results of genetic testing are reflected in the features of social interaction among people and, in particular, are stigmatizing factors. However, one cannot argue for the unconditional correctness of such analyses, which is an additional reason for reviewing liability for unfounded bias. Wu et al. (2019) report the results of studies carried out by reputable laboratories and note extremely significant outcomes: about 40% of all positive tests conducted by one of the corporations are false (p. 758). This correlation proves that the social condemnation of people with a genetically unfavorable history is unacceptable from an ethical perspective. The risk of errors is an additional factor that is to be taken into account, and stigmatization as a phenomenon cannot be sustainable if there is no accurate and verified information. At the same time, even if relevant laboratory tests are justified, bias towards a person based on a predisposition to certain diseases is a factor of uncivilized attitude. Society supports people with physical and mental disorders, and the manifestations of intolerance towards those with a potentially negative genetic history are illogical.
The manifestations of social condemnation of people with negative results of genetic tests are unacceptable not only due to the ethical factor. As Bélisle-Pipon et al. (2019) argue, for many patients, certain laboratory tests are prescribed from a medical perspective, and their health depends on how timely potential harm can be prevented. It is wrong to condemn a person for the fact that he or she monitors one’s well-being and wants to provide oneself with an opportunity to avoid severe problems. However, the existing bias prompts such tests to be conducted secretly, which contradicts the principle of free access to medical services. According to Bélisle-Pipon et al. (2019), many people are concerned about discrimination and are not ready to share the results of their analyses with insurers. According to the authors’ research, the number of respondents who support this position is 28% (Bélisle-Pipon et al., 2019, p. 1198). Such a result indicates that people understand the stigma, which, in turn, is unacceptable in conditions of free access to health care. Therefore, stigmatization as a result of not accepting other people’s negative genetic tests is an unfair outcome of social bias.
Social stigmatization may be one of the reasons why genetic testing has not developed enough to maximize its potential. As Cirino et al. (2019) remark, the knowledge that this procedure provides can improve the diagnosis of diseases of various profiles and exclude the development of dangerous ailments at an early stage. However, the fear of possible condemnation by employers, insurers, and other third parties prevents many people from undergoing such laboratory tests, which is the result of erroneous beliefs. Neither medical personnel nor other persons involved in genetic testing have the right to publish the results of analyses. However, even if specific data need to be presented publicly, for instance, to draw up an insurance policy, this is not a justification for conviction or bias. According to Miller and Tucker (2017), the advanced mechanisms of genetic testing and the regulation of this procedure could increase its value in the context of global health due to the capabilities of high-precision screening. Therefore, no prejudices should impede people’s right to protect personal health and rely on highly qualified and modern medical care.
Conclusion
Despite its potential benefits, genetic testing carries some negative implications, in particular, threats to privacy, employment discrimination, the denial of health insurance services, and social stigmatization. In order to address these challenges, appropriate regulation is necessary in order to eliminate bias towards people for whom such a procedure may be necessary. Otherwise, modern advances in the medical industry cannot be realized, and dangerous diseases will not be detected at early stages due to the existing prejudices. In addition, the violations of the ethical principles of interaction among people will continue, which is unacceptable in a modern civilized society. The practical value of this research is an opportunity to assess the existing gaps and take appropriate measures to address them.
References
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Chester, D. (2020). Why private DNA testing is a threat to our privacy. Infosecurity.
Cirino, A. L., Seidman, C. E., & Ho, C. Y. (2019). Genetic testing and counseling for hypertrophic cardiomyopathy. Cardiology Clinics, 37(1), 35-43.
Miller, A. R., & Tucker, C. (2017). Privacy protection, personalized medicine, and genetic testing. Management Science, 64(10), 4648-4668.
Pitts, P. (2017). The privacy delusions of genetic testing. Forbes.
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Vajda, A., McLaughlin, R. L., Heverin, M., Thorpe, O., Abrahams, S., Al-Chalabi, A., & Hardiman, O. (2017). Genetic testing in ALS: A survey of current practices. Neurology, 88(10), 991-999.
Wu, S., Pollard, J., Chowdry, A., Scheller, R., & Gentleman, R. (2019). Addressing the accuracy of direct-to-consumer genetic testing. Genetics in Medicine, 21(3), 758-759.