Genetic Testing

Introduction

One kind of medical test called genetic testing searches for variations in genes, chromosomes, or proteins. Genetic test results can help establish a person's likelihood of acquiring or passing on a genetic ailment, as well as validate or rule out a suspected genetic condition. There are already about 77,000 genetic tests available, and more are in the process of being created.

Genetic testing has revolutionized medicine, particularly diagnosing and treating neurobiological disorders. These tests pinpoint genetic mutations linked to various diseases, and people can learn how to act preventively and even modify their lifestyles to lower the chance of contracting a disease. Nonetheless, the rapid growth of genetic testing also raises various ethical and privacy issues.

Reasons for Genetic Testing

 Numerous reasons exist for which genetic testing might be offered, including:

·       In order to confirm or exclude a diagnosis in a person exhibiting signs of a hereditary disorder

·       For those who had a prior child who had a genetic disease or who have a family history of the condition

·       To identify potential genetic disorders in newborns so that immediate therapy can begin

Arguments for Regulating Diagnostic Genetic Tests

Privacy and Ethical Concerns

Genetic data is inherently personal and sensitive. There is a high potential for misuse by employers and insurance companies without proper regulatory frameworks. This is why, in the United States, the Genetic Information Nondiscrimination Act is so critical; it prohibits health insurance companies from using genetic information to make coverage decisions and bars employers from making hiring or firing decisions based on one's genetic makeup (U.S. Equal Employment Opportunity Commission, n.d.). Internationally, a consensus is being reached on the need for protection against genetic discrimination and to preserve privacy rights (Legislative Services Branch, 2019).

Benefits of Diagnostic Genetic Tests

Early Detection and Prevention

 Genetic tests can indicate a predisposition to different diseases, which allows early intervention and changes in lifestyle that reduce the risk of developing diseases considerably (Roberts et al., 2018). For example, testing for BRCA1 and BRCA2 leads to prophylaxis for breast and ovarian cancer, thus able to save lives (Collins & Varmus, 2015).

Genetic testing will facilitate personalized treatment and care because the genetic data will inform prescriptions of the patient and, therefore, the most suitable treatment given, which will optimize outcomes and reduce costs in healthcare (Genetics and mental disorders: Report of the National Institute of Mental Health's Genetics Workgroup, n.d.-a). This allows for better and more personalized treatment options and quality of care (Lewis & Vassos, 2020).

Protection from Misuse by Governments and Authoritarian Regimes

There is a fear that genetic information could be misused by the government, especially in authoritarian regimes, to discriminate against some groups of people in society and hence maintain social control. History is replete with instances of misuse of genetic data: selective breeding and population control in the eugenics movement, among others. To prevent such occurrences and take care of the genetic privacy of individuals, there is a requirement for international solid rules in this respect (Smith, 2023). For example, the recent controversy over China's use of genetic data for surveillance underscores the need for global regulatory frameworks (Leibold, 2020a).

Prevention of Discrimination

It is essential to regulate genetic tests to prevent discrimination in matters of employment and insurance. Though GINA protects individuals against genetic discrimination in the U.S., it is essential that similar protections are made worldwide so that people are not denied opportunities or treatment just because they have a specific genetic predisposition (U.S. Equal Employment Opportunity Commission, n.d.). Indeed, in the case of fears of discrimination, some functional genetic testing can be avoided. For instance, countries like Canada passed laws such as the Genetic Non-Discrimination Act to ensure citizens are not discriminated against on a genetic basis (Canadian Human Rights Commission, n.d.).

Ethical Issues and Infringement of Privacy

Genetic testing carries with it significant ethical concerns regarding the right to privacy versus the benefits that arise from the sharing of genetic information to undertake research or ensure public health. It would represent a gross violation of privacy if this information, without any authorization from the owners, were used for marketing and insurance purposes, which the genetic data is best reserved against (Vayena & Gasser, 2016). Genetic tests must be regulated to mitigate these abuses and to ensure that the ethical handling of genetic data is fostered (Nuffield Council on Bioethics, 2018). Many bioethics organizations in numerous countries demand the creation of such frameworks because of these various concerns and the need to protect the rights of people (Nuffield Council on Bioethics, 2018).

Examples of Misuse in the Real World

A major example of putting genetic data to use in tracking individuals and solving crimes is the case of the Golden State Killer, which again raises numerous concerns with regard to privacy. Law enforcement obtained genetic data from commercial databases without consent, thereby fueling debates on issues of privacy and the necessity for regulatory oversight (Leahy, 2018). This is an excellent example of the potential for abuse of genetic information and the need for privacy and protection under the law (Leahy, 2018).

Anticipated Views against the Control of the Diagnostic Genetic Test

Innovation and Advancement

Scientific research and development, with over-regulation, may pose challenges through a proper balance between oversight and innovation, technology will be constantly refined and expanded on concerning genetic testing, thereby an integral part of the progress of medicine (Evans & Burke, 2008). Overregulation can impede the development and availability of new tests and restrict access to advanced health care. The biotechnology industry proclaims that flexible regulatory policies are necessary for innovation and rapid access to new technologies. These can also reduce morbidity and mortality from infectious diseases rapidly by proper management of the outbreaks.

Autonomy and Informed Choice

Overregulation can encroach on personal freedom and the right to make informed health decisions. As a result, people should be free to access or reject genetic information, with such freedom based on the highlighted "the right to know and the right not to know" principle without unnecessary government interference. Regard should be done, balancing the need for privacy with respect for individuals' autonomy in managing their genetic data. For example, the bioethics community supports policies that allow information to reach individuals so that they can make autonomous decisions about genetic testing (National Institutes of Health, 2020).

Employer and Insurer Interests

Employer Benefits

Employers are, once again, in a position to use genetic information in designing workplace wellness initiatives that can lead to more employer productivity. Through proper treatment targets based on genetic information, there is a healthier and, hence more productive workforce.

Risk Assessment for Insurance

On its part, the insurance industry claims that access to genetic information would enable adequate risk assessment and support the provision of premium rates that are sensitive to a person's health status. From this point of view, what is being called for is a balanced approach to this issue—the apparent contradiction between the protection of private data and a life reality in which insurers exist. That is the essence of the given perspective: "Playing the Odds: Health insurers want to know what's in your DNA" by (Joly et al., 2010). It has been argued by the industry that with genetic information, the right estimates of the risk being posed could be accessed and consumers would benefit through accurate pricing. (Joly et al., 2010)

Non-Regulatory Alternatives

Alternatives of regulation in the form of education promotion and industry self-regulation also turn out to be an effective strategy in solving privacy concerns. Educating the public and fostering transparency through using genetic data will promote trust and informed decision-making (National Alliance on Mental Illness, n.d.-a). The efforts led by industry, including the voluntary codes, can be used hand in hand with the regulatory bodies to implement protection of genetic information better (GenomeWeb, 2019).

Psychological Impact

Genetic testing has a significant psychological impact that it attributes to anxiety, stress, and fear of discrimination. Knowledge of a genetic predisposition may cause psychological stress. Genetic counseling is provided to help the individual understand and accommodate the result of the test. Genetic counseling helps the individual cope with his or her decision-making process and emotional concerns associated with genetic testing and assists in offering support and information. This is where genetic counselors come in to play a vital role in minimizing the psychological impact and making sure that individuals are adequately informed of what their genetic data means (Addressing psychological implications of genetic testing on patients and families, 2013).

Conclusion and Personal Stance on Regulation

After thoroughly reading the arguments and potential risks, I side with the idea of regulating diagnostic genetic testing for individual privacy protection. Thus, there is a strong need for a regulatory framework due to the potential misuse of genetic information that may result in discrimination against an individual and invasion of privacy. It is, therefore, important that genetic data be protected under laws that relate to privacy, without which the public will not entrust such genetic testing or make use of the same for health benefits.

Regulating genetic tests combines the dual benefits of advances in medical science with the ethical responsibility to protect individuals from misusing their genetic information. Such an approach could then make it feasible for genetic testing to be a positive force in healthcare without being open to potential exploitation and abuse.

 

 

 

 

 

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