Premarital Testing Research Paper Example

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Abstract

Premarital testing can be a valuable prevention against the development of infectious and genetic diseases. It helps protect not only the husband and wife but also the future generations and society. Many countries have put into practice mandatory premarital testing programs. On the other hand, a number of ethical challenges emerge today, which manifest differently because of culture, tradition, and religion. Mandatory testing and respect of conﬁdentiality are among the most important ethical challenges in premarital testing. Autonomy in making decisions is one of the essential ethical rules in the medical ﬁeld, and making premarital testing optional may facilitate spreading of some diseases, while making it mandatory may contradict human rights and lead to social challenges. Respecting conﬁdentiality and privacy is widely accepted as a basic ethical right of people. Who has the right to know the personal information of other people is questionable, especially when information can be beneﬁcial and prevent future diseases and improve health. Moreover, other issues must be considered such as discrimination and stigma. In addition, contrary to the right to know, there is the right not to know, especially among family members. In addition to these ethical challenges, there are also economic challenges because of the cost of testing. However, regardless of these ethical challenges, premarital testing is an effective tool that can prevent the spread of diseases and improve the quality of life of individuals and societies.

Introduction

Over the past decade, an increasing number of governments, communities, and authorities have implemented obligatory premarital testing policies for both genetic diseases and infectious diseases. Hereditary or genetic diseases distress millions of families all over the world. About 5 % of all pregnancies lead to the birth of a baby with a considerable congenital malformation, genetic disorder, or disability. Albeit several affected people live happy and full lives without suffering or pain, many families continue to be deeply affected by hereditary conditions, regardless of better treatment, support services, and education. Furthermore, it is necessary to test for infectious diseases, particularly for HIV infection, since the outbreak of HIV has turned out to be a worldwide concern. In the face of the counter mechanisms to prevent the transmission in some areas, there is an increase of new infections in some regions. Moreover, outpatient medical, noninstitutional, social, and educational services, in addition to lost economic yield from family members caring for individuals with genetic disorders, impose a signiﬁcant cost on the community and economy overall. Certainly, prevention is the best defense against infections. Premarital testing can be a valuable prevention against the development of infectious and hereditary diseases. Through this testing, it is possible to protect not only the children but also the grandchildren. Many countries have put into practice the mandatory premarital testing program with the aim to reduce the incidence of genetic disorders and infections in future generations. Nevertheless, a number of ethical problems emerge today in this niche both in developed and developing nations. These ethical challenges manifest differently, depending on the context of culture, tradition, and religion.

History Of Premarital Testing

In 1975, a screening known as premarital thalassemia testing was ﬁrst conducted in Italy, as a component of a school prevention program. However, testing for sickle cell anemia was conducted even before in 1970 in Virginia. Afterward, nationwide screening and testing programs also commenced in Cyprus, Canada, Italy, the UK, and Greece during the 1970s, with established success. Premarital testing has been in practice in the western world for a couple of decades (Tosun et al. 2006). Many countries, such as Jordan, Saudi Arabia, Tunisia China, Malaysia, and India, later implemented this testing as mandatory or voluntary (Al Hamdan et al. 2007).

Conceptual Clarification/Definition

Premarital care is the health and well-being promotion strategy for couples before marriage, and it is regarded as the most important preventive care before planning for conception. It also serves as an imperative step toward protecting the society. Premarital care involves premarital testing and counseling. Marriage is a signiﬁcant event in the lives of individuals who decide to start a family. However, a number of couples give birth to babies with certain genetic disorders, which profoundly inﬂuences the lives of all family members. Many hereditary and infectious diseases cause signiﬁcant suffering and inﬂuence social, psychological, and even economic well-being of affected individuals as well as their loved ones. To avoid such repercussions of infectious and hereditary diseases, premarital testing is indispensable (Alam 2006).

Premarital testing is deﬁned as carrying out an examination for couples who are going to be married to recognize if there is any risk of infectious diseases and genetic disorders being passed between a couple as well as onto future generation. The testing involves medical consultation and counseling on the odds of transferring these diseases not only to the partner but also to their babies in the future. It also aims to provide couples with alternatives and options to help them plan for a sound, happy, and healthy family. Premarital examinations can be signiﬁcant factors in the prevention of the transfer of disease. They can identify and alter, via management and prevention, certain medical, behavioral, and other risk factors related to health that can inﬂuence pregnancy outcomes (Carroll and Doherty 2003).

The healthy marriage is considered a national public program. Therefore, premarital testing aims to decrease the ﬁnancial burdens to the family and community that are associated with the treatment of disorders, limit the transfer of a number of genetic and infectious diseases, decrease the burden on health organizations, avoid the psychological and social implication of disorders, promote healthy marriage, and increase people’s acceptance of testing. Both premarital testing and premarital counseling are important through educating couples and offering them precise and unbiased information.

Reproductive partners can legally attempt to make sure that the children they generate are healthy without having to suffer needlessly from hereditary diseases. The interest in the health of future offspring reinforces the ethical justiﬁcation of reproductive associates to obtain information regarding their spouses’ genes (Carroll and Doherty 2003). Spouses can have an ethical responsibility to prevent bringing into life a baby with genetic defects, especially if there is an option to have a healthy baby.

Ethical Dimension

Medical practice concerning humans raises multilayered ethical, social, and legal matters. The ethical clinical practice depends primarily on three basic principles: beneﬁcence, respect for individuals, and justice. Beneﬁcence requires a positive balance between the possible beneﬁts and harms. Respect for individuals emphasizes the duty to obtain informed consent. Justice implies that vulnerable people must not be abused and that all people must be treated equally. To promote premarital testing for infectious and genetic diseases and reduce the bias by society and insurance companies, the disciplines of ethics and genetics counseling have congregated. Whether family members of somebody with a positive prognostic premarital examination should be informed of the results and possible risks is debatable, as the issue concerns the ethical and moral responsibilities of the patient and the diagnosing doctors. The decision to inform relies on the ethical analysis.

Therefore, the aim of bioethics is to offer individuals with the emotional as well as technical tools to make their own choices as wisely as possible in a multifaceted and sometimes unstable scientiﬁc setting. In terms of premarital testing, two central aspects have to be considered, i.e., the issue of mandatory testing and conﬁdentiality and privacy.

Mandatory Nature Of Testing

Mandatory testing for genetic and infectious diseases involves testing a person’s health status without obtaining his/her consent or considering his/her privacy and conﬁdentiality. Thus, the test (either negative or positive) is linked directly to the person without protecting his/her identity. Mandatory testing is advised to screen for biological activity or blood disorders to stop the spread of disease. Mandatory testing is necessary when it involves the screening of organs, semen, blood in blood banks, tissues, or any kind of biological samples. Nevertheless, it is always advisable to implement testing willingly with individuals’ consent that would ensure conﬁdentiality and privacy and with counseling before and after the test. Yet, by implementing mandatory testing for either infectious diseases or genetic testing or both may lead to stigma, conﬁdentiality problems, false positives, management insufﬁciency, and interruption in doctor-patient rapport that are widespread in the ﬁeld (Schuklenk and Kleinsmidt 2007).

From a public health perspective, it is not difﬁcult to give reasons for mandatory premarital testing. Reasons include the detection of an unrecognized genetic disorder or infection. Early detection leads to effective treatment. An early detection of infections like HIV can decrease HIV transmission to spouses and children.

Moreover, it has been well established that any kind of testing carried out without the consent of patient not only is immoral but can also be damaging to the patient and have negative effects on prevention endeavors. The existing research has validated that such testing and counseling can be a worthwhile element of prevention of the spread of hereditary disorders as well as infection, and the followers of voluntary testing consider mandatory testing insufﬁcient and unethical. They want premarital testing to be a part of a “package” of care and support services (Shaikha et al. 1997).

It is very easy to disapprove of the mandatory testing on grounds of oppression, human rights, and control. However, it is important not to overlook that in some countries, the centers responsible for testing are not obliged to keep all the tests results conﬁdential; instead, infected candidates for marriage must be reported to the police.

There is no doubt that conﬁdential and voluntary premarital testing is preferred over mandatory one (Uneke et al. 2007). In many countries and regions with gender disparities and those where religion is actually the major defense against infections like HIV, mandatory testing has been implemented for several years and regarded as a fundamental public health strategy to decrease transmission of HIV infection. Yet, social complications make the matter difﬁcult in terms of increasing the awareness (Gostin 2006). Knowledge regarding the infection is insufﬁcient, and tradition supports strong privacy surrounding some diseases, such as AIDS. Additionally, the families usually arrange marriages in these countries, making it difﬁcult for the authorities to enforce these mandatory tests.

Several studies have shown the beneﬁts of primary prevention. It is believed that it will take time to change the conservative traditional strategies of treating the illness rather than preventing the illness (Esack and Chiddy 2009). Considering the increasing epidemic of genetic diseases and certain infections particularly in high prevalent regions, mandatory premarital testing can be implemented to thwart the increasing spread.

Confidentiality And Privacy: Who Has The Right To Know?

Conﬁdentiality refers to the obligation to not disclose the information that an individual has revealed in conﬁdence. Privacy is an individual’s right to protection from unauthorized access and use of the information pertaining to this individual (Hodge 2003).

Who has the right to know individuals’ genetic structure and for what purpose? Likewise, healthcare professionals and reproductive partners have similar reasons for knowing the information. As long as individuals with genetic anomalies face distrust and prejudice, societies cannot lawfully compel people to be acquainted with their hereditary makeup (Juengst 1995). On the other hand, it is recognized that the work of community health authorities is typically resulting from epidemiologic data obtained by gathering the data about the illnesses and well-being of people. If this effort promotes human well-being and decreases human soreness, then to some extent, the moral duty is to disclose the facts that can help the authorities. Moreover, if it is believed that other individuals should not obstruct public health agendas by hiding private information, then it is the moral duty to disclose the information to health-care authorities and related people. Yet, when it comes to completely mandatory ethical duties and lawful compulsory obligations, the condition is different. The harm imposed on others by concealing their genetic data is indirect and ambiguous, whereas the harm imposed on people with genetic disorders in the form of suffering and bias is direct and considerable. In an ideal world, individuals may do their best to support the public health authorities in their attempts to improve health facilities. At the same time, they may not want to live in fear of discrimination should they expose their genetic diseases.

Nonetheless, genetic diseases, although possibly lethal, are preventable or curable if detected at an early stage. Thus, it is beneﬁcial for people to identify such a latent condition. However, there are two types of cases. If the disease can be prevented or treated by a minor surgery that does not have severe consequences on the patient, then each reasonable individual would decide to undergo such treatment. However, if the management were unsuccessful, painful, or difﬁcult, the patient would have a reason to avoid such treatment. The decision to inform people of their genetic makeup or deviation is an ethical issue. The libertarian and utilitarian perspective may produce different outcomes.

Utilitarians claim that ethical decisions must consider a burden/beneﬁt ratio from a shared point of view. This position validates the good of public over that of the individual. To estimate total happiness, certain factors have to be considered, such as proximity, intensity, extent, certainty, duration, purity, and fecundity (Brannigan and Boss 2001). If a great number of persons are at risk, they ought to be informed. Informing family members at risk could decrease their suffering via medical intervention, decrease the amount of symptoms, reduce the casual pain, delay the beginning of the symptoms of the disease, enhance the life quality by means of satisfactory preparation and lifestyle changes, and avert the transmission of the disease. This motivates other people to undergo screening and make decisions that inﬂuence their families. The information could discourage people from having offspring and passing on the genetic defect. Genetic risk testing can have implication for communities and economies at large by saving health-care costs. A communitarian outlook highlights the ethical values of a distinct community. Besides considering the beneﬁt/risk for the public, decisions are also based on the welfare of a community, which can include solidarity (Beauchamp and Steinbock 1999). Premarital prognostic testing of extremely penetrant disorders is often a decision of the individual or family. Meanwhile, public health authorities assume screening or testing for additional universal, less penetrant illnesses, including chronic health diseases.

Libertarians are of the view that individual independence is of utmost importance. People have the right to freedom of speech, privacy, conﬁdentiality, and autonomy. The autonomy suggests that after obtaining full information and counseling, each individual has the right to decide how to use this information and whether to notify family members. Additionally, a trust exists between the patient and the medical doctor. Breaking the trust between the patient and the physician can have overwhelming outcomes.

In terms of public health, freedom rights are often in disagreement with utilitarian perspectives. The expectation is that people would support testing not merely for their own beneﬁts but also for the sake of their family members as well as society. In addition, social stigmatism is connected to infectious diseases and genetic disorders. People diagnosed with an infection or some genetic disorder are often mocked or discriminated by other members of community or even family members and/or companions. Libertarians emphasize that individuals have the right to survive in the absence of such discrimination, terror, and social stigmatism.

Concerning family members, an obligation exists, i.e., “a right not to know”; family members may not want to know about their risk for a hereditary disorder or an infection, since this knowledge might signiﬁcantly inﬂuence their lives. An individual may avoid getting married, having family and offspring, or making important career choices, causing frustration and separation. The principle of non‐maleﬁcence supports “the right not to know.” The followers of libertarianism may conclude that every individual has a right to be contented and make choices without being inﬂuenced by counselors, doctors, and other society members.

Communication of the risk in the public health and medical backgrounds can be regarded as important issues, but the ﬁnal decision depends on the patient. Alternatively, family members could look at their rights in a different way. They may possibly think they have the full right to be acquainted with their risk to make informed choices. This is where the doctor could have to decide between the rights of the patient’s family members and the rights of the patient.

Some propose equilibrium between libertarian and utilitarian interests pertaining to premarital testing. Therefore, they suggest a number of ethical considerations when making ethical choices. These involve respect for conﬁdentiality and privacy, independence, individual best interests, accountability for the genetic and infectious health, increased social interest/reduced grave social injury, the reproductive autonomy of people, genetic justice, affordability, cohesion/joint help, and value for dissimilarity (Modell and Citrin 2002). These considerations focus on the advantages to the person as well as society so that gains T to both parties can be enhanced and detrimental consequences to both parties can be reduced.

Consequences Of Testing Results

When people realize that they have a genetic disease or infection, e.g., HIV, they are likely to feel overwhelmed, anxious, and depressed. However, premarital testing aims to help individuals lead a happy and fulﬁlling life. The affected people might be told to avoid marriage for the sake of their future children and in case of any infection; they might be asked to undergo a treatment before marrying. In case of HIV infection, treatment is done until the viral load decreases because HIV can be easily transmitted to the partner via sexual contact. It also has a vertical transmission, i.e., it can be transferred from a mother to a baby. However, being positive for HIV does not imply social isolation. Although the treatment is promising, no cure exists. People need to be encouraged, and it is their right to be happy even if premarital testing is positive for a genetic disorder, infection, or both. Counseling is usually offered to inform people in a fair or unbiased way so that they can make their own decisions regarding their marriage. People may feel more comfortable making a decision following a discussion with a counselor. The counselors may discuss the risk of onset of genetic disorder in future offspring in light of the certain deﬁnite facts. Knowing about the risks in their progeny is important and the lawful right of the individuals.

Counseling or talking to a doctor is important before making a further decision. It has been observed that uncertainty is often present following the testing. A doctor or counselor can help people sort through their choices at this point, helping them reduce the risk (Shaikha et al. 1997). Though usually nothing can be done to avoid the transmission of genetic disorders, certain infections can be managed easily, and following the treatment, the transmission can be eliminated.

Furthermore, it is important to remember that having a defective gene or any sort of communicable infection is not the fault of individual who carries such gene or has infection. No one can be blamed for defected genes they have inherited. It has been observed that families who cope with genetic risk occasionally have feelings of blame, guilt, or liability; however, genes are allocated by chance and no discrimination is allowed.

Other Ethical Challenges

Some researchers suggest that the enforcement of mandatory premarital testing gives rise to a number of legal concerns about the breach of fundamental autonomy, the right to get married, and the inferences of unintentional withdrawal of blood (McKillip 1991). They concluded that mandatory premarital tests were not a cost-effective means to prevent and control HIV infection. Another concern they noted was the decrease in the number of marriage licenses.

Mandatory premarital screening thus has huge ﬁnancial implications associated with assessing several new couples every year. Mandatory premarital testing is more expensive compared to other prevention programs, and it has a restricted inﬂuence on the epidemic. Therefore, some alternatives and economical strategies may be useful, such as screening for HIV in pregnant women and subsequently treating affected fetuses as well as increasing the accessibility to treatments.

Conclusion

Premarital testing must be undertaken as an element of public health measures to promote health appropriate behavior, prevent infections and genetic disease spread, and offer precise and practical knowledge of the risk. Premarital testing offers various beneﬁts for everyone, including adult men, women, as well as children. It has been proposed that premarital testing can improve the quality of life and increase the life span and survival rate of infected individuals. Organizations along with health professionals should assist people and families impacted by certain genetic disorders by offering genetic services and improving measurement and assessment tools. Incorporating premarital tests into individual as well as public health care can lead to noticeable health improvements, particularly when administered by well-educated health professionals who understand the interaction of environmental and genetic factors in health and sickness.

In addition, the media are vital sources of information in relation to premarital testing, genomics, communicable infections, and their social implications. Additional programs should be developed to help people understand the purpose and necessity of such testing and screening.

Additionally, a certain level of cultural consciousness is an essential requirement for the culturally sensitive delivery of care. Governments as well as institutions should consider the rights of individuals and promote or prohibit obligatory testing, depending on situations or personal preferences , to make it more human friendly. They should focus on improving the access to premarital testing, counseling, and other services and passing laws to prevent prejudice and stigma, which are more proliﬁc compared to the mandatory testing. An important prerequisite is to enact suitable laws to protect the human rights.

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