Technology advancement in the medical sector has had an important contribution in the pathology of many diseases. One of the innovations has been, testing human DNA, commonly referred to as Genetic testing. The procedure involves determining the DNA sequence and changes in the DNA sequence of specific genomes in a human body (McCormick and Connors 317). The tests are used to diagnose traits and diseases, assess the severity of a given disease, and determine gene changes that can be inherited from one generation to another, determining medical treatments and gene changes that have a higher risk of causing a disease (Sakharkar and Chow 984-985). However, the different genetic tests raise ethical issues for society, medicine, public health policies regarding the confidentiality, implementation and use of the tests (McCormick and Connors 317). Also, there are cases where the tests results have been used to discriminate people for example in employment and insurance covers (McCormick and Connors 321). This paper is a response to a case study of the ethical issues in genetic testing.
Genetic testing is done on tissue samples from saliva, blood, hair, skin, tumors, amniotic fluid and the inside part of cheeks (Sakharkar and Chow 984-985). There are different types of gene testing based on the purpose of the test (Sakharkar and Chow 984-985). The diagnostic test is done to determine an already existing ailment. Predictive and presymptomatic tests the probability of a person developing a disease (Sakharkar and Chow 984-985). Carrier testing is done on persons who have a gene change that can cause a disease but do not portray any symptom of the disease. Carriers can pass the gene to their offsprings for the disease to manifest itself (Sakharkar and Chow 984-985). The test is done by historical medical records in a family. Fetuses diseases can also be tested through a prenatal genetic testing, and a can also be screened a day or two after birth. There is also pharmacogenomic testing that determines how an individual body process a given medicine (Sakharkar and Chow 984-985). Lastly, research genetic testing is done for knowledge improvement in a given area of medicine (Sakharkar and Chow 984-985).
Autonomous agents advocate for individual reasoning, willingness, and decision making to be respected by all social, legal and moral norms without any interference (Andrews 247). In the context of genetic testing and screening, autonomy refers to one’s right to make an informed, independent choice whether to take a genetic test and receive the test results. Also, a person should have a right to control their destiny irrespective of their genetic status without interference from others (Andrews 247). Many religious ethicists are against discrimination of people on genetic testing grounds. The major challenge of gene testing is insurability; some people may be discriminated from getting employment and medical services (Andrews 247). In 1989, the Church and Society Commission of the World Council of Churches released a study document, “Biotechnology: Its Challenges to the Churches and the World,” which draws attention to “unfair discrimination in work, healthcare, insurance and education.” Similarly, in the proposal approved by its 1992 General Conference, the United Methodist Church Genetic Task Force listed prominently among possible Human Genome Programs repercussions, “discrimination: the suffering and/or hardship that may result from “The use of results of genetic screening of adults, newborns and the unborn for the purpose of discrimination in employment and insurance is unacceptable.” (Andrews 250). Although screening has its advantages in medical settings, employers may take advantage of the information to cut medical insurance premium costs for employees with hereditary medical conditions, adding a new class of poor, vulnerable and uninsured people (Andrews 248). High-risk individuals pay a higher premium for medical covers and at times denied the cover.
The law protects human dignity and it is on this ground that adults have autonomous decision-making rights. We should make decisions on reliable information provided to us; health care providers should disseminate valuable information to patients to inform their decisions (Andrews 248). Information may detail any potential risks, benefits of the tests and prognosis nature and offer alternatives. A patient has a right to control the use of any tissues obtained from their body, there are some limitations to this right in some states where research on humans can be carried out on blood samples provided for the purpose of gene testing like in the case of newborn screening, on conditions that the sample remains anonymous, and the use had not been anticipated prior to the sample collection (Andrews 249). Otherwise, if there was a prior motive to use the sample, consent must be obtained. A person also has a right to their privacy that should not be intruded, in David’s case, His sister was not in a position to force David to take action regarding the news she gave him, and he had to decide on his own to take the tests.
On taking a test, an individual has the right to decide who can view their results without feeling coerced to reveal any information to employers, spouses, insurers, family members, researchers or any other third parties that might be interested in the same information (Andrews 249). However, the right to privacy scope is limited, and cannot override the interest of other people. Health care providers should always consider the issue of confidentiality when dealing with the samples entrusted to them by patients and results of patients (Andrews 250). There should be controlled access to patients’ medical information even to employers and insurance companies. Confidentiality rules are a must for patient and social welfare; these rules foster trust and encourage people to seek medical care when ill (Andrews 251). Rules also provide a platform for autonomy and privacy principles. There are instances when these rules are limited for the purpose of protecting other values like preventing serious harms, communicable diseases and venereal diseases (Andrews 251).
Moreover, the prevention justification given for limiting patients’ rights does not directly apply to most genetic diseases. Currently, most of the genetic diseases are not being prevented, but rather the controls are to prevent the birth of a particular individual (McCormick and Connors 317). This issue is one of the questions David battled with whether they would be forced to terminate Nancy’s pregnancy. People’s views on disabilities differ, and the intervention took also raises questions among different schools of thoughts. Religious morals do not advocate for abortion. Genetic screening may increase the abortion rate among those who get to learn the genetic risks to their fetus (McCormick and Connors 324). Furthermore, people with a particular genetic disorder may feel threatened and view this as an attempt to eliminate them. Also, it can have an impact on their self-esteem bearing the fact that the condition cannot be corrected, and they have to live with it for a long time (Andrews 253). Thus, the unexpected revelation from genetic testing can haunt the person.
Christians believe that every human life is sacred and should be protected as it belongs to God. Despite one having deformities, Christians should take it as part of sharing in the suffering of Christ, and they should not seek to modify the creation of God through genetic modifications. Modifying human genetics is considered as “playing God” and attack on the sovereignty of God (McCormick and Connors 325). The notion that we are all created in the image and likeness of God serves as a reminder to respect all kinds of people. Contrary to this is the co-creation task that humans are called to. God commanded us to procreate and complete the creation He began at the beginning of the earth. However, our ability to create is limited to altering materials existing in the Genesis creation order (McCormick and Connors 325). Genetic screening benefits to society cannot be ignored. However, there should be limits to what extend the procedures compromise our moral standards, the dignity of humans, social rights, and religion teachings.
Andrews, Lori B. Assessing Genetic Risks. Washington, D.C.: National Academy Press, 1994. Print.
McCormick, Patrick T, and Russell B Connors. Facing Ethical Issues. New York: Paulist Press, 2002. Print.
Sakharkar, K. R., and V. T. K. Chow. "Exploring Genome Architecture Through GOV: A WWW-Based Gene Order Visualizer." Bioinformatics 20.6 (2004): 984-985. Web.