IndexContextContextGenetic Testing MethodsGenetic Testing IssuesSteps to Managing IssuesConclusionBibliographyThe field of genetic testing and genetic research is expanding very rapidly. Along with this arise many questions, ethical issues such as genetic privacy, the possibility of genetic discrimination and eugenics. There is also the question of how to transmit this genetic information correctly. The big question is, “Should the field of genetic testing expand or stay as it is?” Say no to plagiarism. Get a tailor-made essay on "Why Violent Video Games Shouldn't Be Banned"? Get an original essay BackgroundNowadays we live in a very technologically progressive society. Every day scientists make new discoveries about how things work in this world. It was in the 1980s that many scientists realized that detailed knowledge of the structure of DNA, the double helix, was needed to improve understanding of basic biology. That's when the comprehensive mapping of our DNA began, which became known as the Human Genome Project (HGP). This is the mapping of all our +/- 100,000 genes and the decoding of the complete sequence of our 3 billion base pairs. In 1994 this HGP managed to create a complete map of the human genome. This does not mean, however, that the Human Genome Project has been completed, much research still needs to be done. Since the inception of the Human Genome Project, a large number of common and rare genetic diseases have been identified and linked to specific genes. The completion of the Human Genome Project has much to offer in this field. For example, special cures and therapies for diseases such as tumors or genetic diseases can arise if its genetic structure becomes known. With HGP it has become much easier to test and determine whether an individual (or their family) suffers from a genetic disease. Eventually the HGP should be able to accurately identify all genetically related diseases and disorders. Even before the Human Genome Project genetic testing existed, but it has increased very rapidly thanks to all the knowledge coming from the HGP. Genetic testing is described as "the analysis of human DNA, RNA, chromosomes, proteins, and certain metabolites for the purpose of detecting genotypes, mutations, phenotypes, or karyotypes related to hereditary diseases for clinical purposes." In the past, genetic tests were based on observation of patients, to which was added laboratory research on blood or tissues and sometimes also extensive family history research. Nowadays genetic testing is much more advanced. The presence and likelihood of genetic diseases can now be easily detected. Unfortunately, it is too simple to say that the mutation of a single gene is the cause of a disease or genetic disorder. Most genetic diseases are multifactorial, which means that the disease is caused by the interaction between different genes and environmental factors. Some examples of these multifactorial disorders are diabetes, schizophrenia, and asthma. In these cases, genetic tests are only useful if it is possible to identify all the genes and factors that interact with each other. And even if these diseases could be detected, more research would be needed to find a way to treat them. Genetic Testing Methods There are several reasons for genetic testing. The first and main reason is to identify whether patients are suffering from any genetic diseases or disorders by using medical tests to enable doctors to treat them properly. Tests can also show the severity of the disease. Many genetic diseases (such as some cancers) can be identified by these tests which can then provide informationand help decide how rigorously to treat the patient. Another reason genetic testing is used is for presymptomatic testing, which is testing before symptoms of a specific disease appear. can be determined. With this type of test people who are at risk for future disease can be identified. These DNA-based diagnostic tools (genetic tests) can be used, for example, on children in whom a genetic disease is likely to occur, since most hereditary diseases appear in childhood. The idea of ​​pre-symptomatic testing is to prepare people mentally, financially and emotionally for possible future illness. Preventing this disease is in most cases very difficult if not impossible. A third reason to carry out genetic tests may be for couples who wish to have a child. In this type of test the couple is tested to help them decide whether or not to have a baby based on the result of whether the baby has a high chance of developing a genetic disease. This is very useful for people who already know they have an inherited genetic disorder. Tests can also be carried out at various stages on the potential child if the couple is already sure of having one. They can, for example, use in vitro fertilization (pre-implementation testing) to see if their embryo has genetic diseases. Only disease-free embryos are implanted into the uterus. Another frequently used testing method is the criminal test, which prepares parents emotionally and financially for the possibility of a child being born with a disease. Some parents may choose to abort their baby when they discover that the baby will have an illness. This is often seen as one of the disadvantages of this way of testing. More and more people are starting to prefer preimplantation diagnosis because it avoids abortions and can therefore also avoid the maternal risk and emotional trauma of an abortion for the mother. An advantage of preimplantation testing is that it can check for multiple diseases. One disadvantage is that it can give people of this generation power and control over future generations because they can decide who lives and who does not. Problems Concerning Genetic Testing For many people many problems and questions arise with all these genetic tests. Some of them even think that, due to the high rate of progress, "we are unprepared as a society to deal with many of the complex problems that will arise from advances in genetic technology." Personal genetic privacy is a big deal for some people. Due to the large amount of information generated by these tests, people think that it will become difficult to ensure the privacy and confidentiality of patients' personal medical records. Others fear a significant increase in costs if privacy and confidential information is guaranteed because healthcare workers must be trained on how to work with the privacy-sensitive information given to them. Thanks to these tests it will be possible for a doctor to carry out a routine blood sample and with it discover everything there is to know about this person's genome, containing information that not everyone should know because it can, for example, lead to discrimination , which will be explained later. Testing on newborns raises the question of the right to privacy, because this genetic information will be stored for future use without the donor's consent. Even though these sample banks or biobanks serve a reasonable purpose, the owners of the samples and their relatives have completely lost power and control over their genetic information. This worries people because they don't know who will get their hands on it and what they will do with it. The partiesInterested in this data include the government, healthcare providers, insurers, employers and family members. Governments and health professionals may need them to compile statistics on the presence of a certain disease in a country or in subgroups. They can also use it to predict the need for certain facilities and resources for treatment. Family members may fear that a positive test for a genetic disorder could affect them too. Another issue with genetic testing is personal privacy in population testing. “Once the specific genes for the most common pathologies have been isolated, it will be possible to screen the population for these anomalies.” Many people fear being marked as having an anomaly because they are part of a particular population in which many people have this anomaly. This raises the question of whether, and to what extent, it is worth carrying out genetic screening (testing entire populations). they fear for example that insurance companies or future employers may use it against you, they may use it to determine whether a person is a "good risk" (high risk) or not information resulting in genetic discrimination. Insurers could use applicants in the future, so they can refuse insurance to people who test positive for certain things, otherwise they will receive a higher commission. Cases where insurance has been denied due to a genetic disease have already occurred, because the insurer calls it a “pre-existing condition.” Elliot argues, however, that almost any genetic disorder could be considered a "pre-existing condition," so if coverage can simply be denied based on our genetic code, insurance will soon cover little more than broken bones and other such incidents . Insurance companies, on the other hand, argue that high-risk customers cause an increase in overall premiums that can drive away low-risk customers. Insurers say consumers are protected from unfair discrimination due to the highly competitive market. Despite this, people feel that genetic information will be held against them. This fear can lead people to avoid these medical tests, to ensure their insurance premiums don't increase. Some states have taken action against this genetic discrimination by insurance companies. They use anti-discrimination laws to protect individuals from being denied coverage because of the results of their genetic tests. Some states even prohibit insurers from requesting genetic test results. There are two factors that limit the protection against discrimination afforded by current state laws. First, the federal Employee Retirement Income Security Act exempts self-funded plans from state insurance laws. Second, nearly all state laws focus narrowly on genetic testing, rather than more generally on genetic information generated from family history, physical examination, or medical records. So, even with these anti-discrimination laws, people are not 100% free from the fear of discrimination based on their genetic makeup. As mentioned above, employers also have an interest in the genetic makeup of individuals. People are hesitant to share their information because employers may refuse to hire people with genetic predisposition to diseases to ensure they avoid thecosts of care in the future. Drlica says he understands this discrimination because companies can save large sums of money by avoiding workers with costly health problems. Employers argue that they need to know their employees' genetic information due to: possible future absences, conditions that put employees at risk in the workplace if employees are sensitive to the workplace environment (chemical allergies , etc.). The fear of discrimination is not only generated by employers and insurers, but also by society as a whole. This becomes very clear from issues related to racism and women's equality and similar problems. Daniel Kelves asks: “Will the ability to analyze the genetic structure of individuals be used to try to define better individuals and thus fan the flames of racism?” Some people fear that these genetic tests create a class of genetically vulnerable people who easily face discrimination. , trauma and stigmatization. Genetic tests may be positive in cases where the disease can be prevented, such as in the case of PKU, where delay in newborns can be prevented. Diseases for which prevention is not possible may be unnecessarily labeled as diseased. One factor that must be taken into consideration is that genes are not the only factor that creates a disease, so people labeled with the genetic makeup for a specific disease do not necessarily develop that disease because other factors do not accompany it. This must be taken into account when dealing with genetic testing to prevent people from being misclassified. A third issue related to genetic testing is that of eugenics. Many people see this as an opportunity to eliminate undesirables from society. The Congress Office of Technology Assessment believes that "new technologies for identifying and altering genes make it possible to achieve eugenic goals through technology as opposed to social control." Eugenics arose from Social Darwinism, the idea that due to evolution (Darwin's theory of evolution) only fit species will survive, while less fit ones will die, and this is how the quality of species is ultimately improved . In this advanced technological age, eugenics can easily use prenatal testing. With DNA tests and screening programs diseased fetuses can be identified and with abortion the incidence of genetic diseases can be reduced. This raises the ethical question: ''when does life begin?''. These prenatal tests give parents the power to decide on the genetic makeup of future generations. Screening and aborting affected fetuses, however, cannot eliminate the gene that causes the disease because carriers can pass on this gene without ever developing the disease. So abortion screening must continue for eternity if we want to eliminate some diseases from this world. The fourth problem with genetic testing is that patients often misunderstand the test results because they find the information difficult to understand, which scares them unnecessarily. Thomas Lee therefore states that "screening programs as well as individual genetic tests require accurate and clear explanations of the results." For this reason, more and more genetic tests are using genetic counselors to help patients better understand the results and to have someone to turn to when things get difficult. Other difficulties arise when genetic counselors are faced with issues like these. Who should they report to? Only the patient? The patients' family? Their husband/wife? All these parties have interests in the test results. 151-155.