Genetic Screening vs. Privacy

It is hard to argue that genetic screening has raised a strong public controversy due to the violation of numerous ethical aspects. The most arguable ethical aspect of genetic screening is violation of privacy, because there has been an agreement regarding the extent to which a patient's privacy and independence of choice can be affected. Genetic screening is known to address prevention of numerous genetically predisposed disorders and diseases, but its liability to misuse and public disclosure of a patient's genetic data makes its predictive power render ambiguous effects. That is why analysis and discussion of privacy in relation to genetic screening still remains pivotal. The following paper gives a profound account of genetic screening opposition to the basic concept of patient’s privacy in regard to social, ethical, and cultural constraints of this controversy.

The history of genetic screening dates back to the 1970s when the first testing for PKU was undertaken. Further, a so-called serum marking method was used to identify a wide array of genetic disorders such as NTDs, CF, HD, and BRCA. Besides, testing for Huntington disease was especially complicated because the disease was traced to obtain numerous forms. The present era of genetic testing is associated with the testing for breast cancer of such types as BRCA1 and BRCA2. It is informative to note that inaccuracy of genetic screening is still the most drastic gap of this biotechnology. This aspect presupposes that the results of genetic testing can present certain evidence for the genetic research but not a diagnosis. Unfortunately, this consideration is often neglected by practitioners, so that inaccurate genetic testing results facilitate discrimination, stigmatization, and stereotyping of patients, who undergo genetic screening, while their genetic data can be exposed to third parties.

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Societal and Ethical Problems

A widespread use of genetic screening has caused numerous problems in relation to the ethics and societal perspective of undergoing testing. The most distinct classification of these issues is presented by the World Health Organization (WHO), which has identified the following tendencies concerning ethical and societal problems of genetic screening. First of all, the WHO suggests that individual's right to choose is violated. In order to reduce prevalence of genetic diseases, many communities encourage couples to undergo genetic screening prior to marriage or birth of a child. Beyond a doubt, this prevents the development of numerous genetic disorders, but it is often debated that it violates a private freedom of choice, because couples and especially women are forced to undergo testing under the pressure of the community without their informed or free consent. 

It becomes clear that genetic information is a matter of privacy and confidentiality. Genetic screening allows assessing an individual's inherent probability of having a certain range of disorders and diseases, so that such predictive characteristic of genetic screening exposes its results to the potential misuse and hence leads to the violation of privacy. In spite of HIPAA and Affordable Care Act policies, insurance companies and employers are often reported to discriminate people with an abnormal genetic predisposition. As a result, there is a tendency of stereotyping such individuals according to their genetic testing results. Furthermore, the agreement not to disclose genetic information about a certain citizen can actually contradict the well-being of his/her relatives, who can potentially benefit from knowledge of specific genetic information. 

In order to return to the subject of societal perspective of genetic screening, it is fair to admit that individuals are often exposed to stigmatization and discrimination in their communities. Agreement for undergoing genetic screening as well as rejection of it may result in adverse social effects produced on an individual or even an entire group. Depending on genetic test results, society selects a particular pattern of behaviors for the given individual. Societies that rely on private insurance often avoid serving people with identified genetic disorders, as they find such cooperation to be unprofitable. Similarly, exposure of genetic data about a certain person frequently results in discrimination in many respects including refusal to provide employment, as well as refusal to provide a particular service, or even communicate. That is why these problems are extremely acute in the contemporary communities and should be addressed using a complex approach.     

Pros and Cons

Pros

Except ethical controversies regarding the use of genetic testing, it is informative to give an account of its factual clinical advantages. In fact, a distinct identification of a certain disorder can be precise due to a technology of single chromosome analysis called Preimplantation Genetic Diagnosis and Preimplantation Genetic Screening. These methods use fluorescent coloring of control DNA and biopsied cells for the detection of normality, monosomy, and trisomy as demonstrated on the picture below. Precision and relevance of genetic screening results are one of the strongest ethical debates, so that this technology suggests that accurate identification of adverse trends during prenatal and natal stages is still an important consideration for many families because they are timely informed about the need for treatment and further clinical intervention. 

At the same time, genetic testing can deploy a framework and specified guidelines regarding further reaction to the results of testing. Again, it is important to place an emphasis on the fact that the framework is aimed at measuring the precision of genetic screening results, so that decision-making of clinicians and families becomes more justified. For instance, genetic testing of channelopathies and cardiomyopathies already utilizes a classification system, which allocates the results according to three categories. The example of this classification is presented in the picture below. Such flexible framework can be applied to other branches of genetic testing, so that potential relevance of all genetic screenings is possible. Nonetheless, precise and accurate results of genetic testing do not exclude presence of psychological and social strain among individuals undergoing genetic screening.

Cons

Ethical issues of genetic screening are frequently discussed due to the presence of the following disadvantages of its use. First of all, invasive genetic testing is described as painful and surgical, so that patients are supposed to expose their privacy to physical contact. Such decisions are often made under the pressure of a family, community, and prevalent culture. Thus, these individuals experience a proactive invasion into their privacy and autonomous decision-making. A personal consent of an individual does not necessarily mean his/her natural willingness to undergo testing. Besides, the prolonged processing of testing results forces many individuals to quit medical care. Women in pre-natal period often stop being attached to their state because they expect a result recommending termination of pregnancy. Again, testing results implicitly force women to make a particular decision, especially with consideration of their financial state to afford treatment of a to-be-born child. Women are observed to have a high level of anxiety after undergoing genetic screening in a pre-natal state. Likewise, the misuse of genetic screening results in irrelevant diagnosis and hence miscarriage of pregnancy. It becomes increasingly apparent that all these constraints fiercely violate privacy of decision-making. Choosing a particular decision becomes a matter of family, community, and clinicians involved in care and support of a person undergoing genetic testing. Existing stereotypes and adverse socio-economic state of low-income citizens make them act in a particular way, which often does not coincide with his/her private decision. 

Analysis of Ethical Issues

The main ethical issue related to the use of genetic screening is potential harm to the health of a patient and a future child in case a pregnant woman undergoes testing. As it has been already mentioned, unclear and irrelevant results of genetic testing lead to inappropriate treatment and intervention, which result in adverse outcomes for the patient. Being forced to undergo treatment on the basis of testing outcomes places patients in a difficult position, meaning that refusal to accept treatment may result in worsening of a state, but acceptance of related interventions may also be harmful. Hence, genetic screening requires a more precise processing of patient’s genetic data as well as involvement of alternative means of diagnosis in order to avoid unjustified and forced decision-making. 

Moreover, vague and irrelevant results of genetic testing also cause a rise of stigmatization and discrimination in socio-cultural environments of a patient. Exposure of the patient’s genetic data for job application, participation in social initiatives, and even opportunity to establish relationships with other individuals has already become a source of strong societal discrepancies. Citizens reported to have any disorders on a genetic level are often rejected by employers, communities, and even relatives. Communities start to strongly believe that presence of certain genetic disorders may cause harm to their environments, so that they attempt to isolate individuals with reported genetic disorders. Stereotyping as a result of privacy violation can be largely observed in such cases, so that a more tolerant culture and behavior should be fostered among the public. 

Eventually, it is necessary to get back to the subject of autonomous decision-making. It becomes increasingly difficult to ignore the fact that such individuals as pregnant women, couples, and entire families are forced to undergo genetic screening because of the pressure from the side of the society and prevalent cultures. Nevertheless, undergoing genetic testing is a part of the ethical problem. As a matter of fact, being tested positive for a particular genetic disorder or disease forces a patient to make a respective decision concerning treatment or any other clinical interventions. Women are forced to terminate their pregnancy or be abandoned by their male partners because of the same stereotypes discussed above. Another dimension of this problem is a social disparity, because of which low-income families have to reject an idea of having children because of their inability to afford treatment of their future child. Taking these points into account, it is reasonable to suggest that genetic screening as well as subsequent treatment (if required) should become a responsibility of the government, especially in regard to such policies as HIPAA and Affordable Care Act. Socio-cultural constraint of the problem needs a proactive promotion of new public agenda, which will tolerate any decision-making of individuals with genetic disorders. Similarly, the development of a culture of free and independent consent for undergoing genetic testing is also an important consideration, which will protect privacy of every single citizen.

Conclusion

The above paper has provided a profound account on the ethical issue of privacy in regard to genetic screening. The study has described the main ethical and societal problems of genetic screening, discussed pros and cons of a genetic testing, and analyzed the ethical problems associated with it. It is necessary to say that the study has identified numerous perspectives of the ethical controversy, which are the following. Ethical perspective of genetic screening is primarily related to the matter of privacy in all respects. Societal and often cultural pressure forces people, especially pregnant women, to undergo genetic screening prior to the birth of a child or marriage. In such a way, they lose independent decision-making and act without informed and free consent. In case a woman or her family cannot afford subsequent treatment, they are forced to terminate pregnancy or marriage, or even neglect any related medical care. At the same time, exposure of genetic testing results frequently raises a problem of stigmatization, stereotyping and discrimination. People with a particular genetic disorder are rejected to have medical private insurance, employment, or even close relationship with other individuals.

It is appropriate to make a general comment on the fact that the society as well as the government should address the problem using a complex approach. Balancing between a reasonable need for genetic screening and forced decision to undergo it is an important consideration, so that local communities should be encouraged to demonstrate tolerance and respect for any decision made by women and couples in this regard. Furthermore, the provision of sufficient financial support for genetic testing and disorder treatment (if present) should become a governmental responsibility. Such solution to the problem is justified based on HIPAA, Affordable Care Act policies, and basic constitutional right for creating a family and giving birth to a child disregarding the accompanying conditions.

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