The Disadvantages of Genetic Testing on Children Discussed in Dena Davis' Book Genetic Dilemmas

It is patients’ right to opt for genetic testing on their own DNA, although they are accepting a great risk by doing so.

As you can see genetic testing is very important and can affect a child's and parents lives for the better and the worst. Children all over the world have serious genetic diseases that affect their life on a daily. Some of these diseases are Achondroplasia, Down syndrome, and Turner's syndrome. Many believe genetic testing is a good way to test for these genetic conditions before the child is even born, but others think that it can harm the baby very badly and even cause a miscarriage, so they choose not to do this kind of testing. Knowing about the most serious genetic diseases is very important for expecting parents to be informed as well as being

Gina Kolata’s article, Ethics Questions Arise as Genetic Testing of Embryos Increases (2014), explains that as the increase of the testing of embryos for parents to choose whether or not to have children has also brought its ethical questions in the light. Kolata uses the Kalinskys case, a family in the article, and how their neurological disease, Gerstmann-Straussler-Schinker (GSS), has raised questions for ethicists who have looked into the case. Kolata’s purpose in writing this article is to inform the audience on the growing topic of embryo testing and also the ethical question that also accompany in order to have the audience to develop a personal view on the issue. Given how the author explains the technical terms used within the article, Kolata is writing to an audience that is not fully aware of genetic testing.

In Improvements in Prenatal Genetic Testing Raise Ethnic Issues, R. J. Crayton produced an article about prenatal testing and whether or not parents should be allowed to have these tests done. First the situation of a high risk baby who will have a disability or defect after birth, so the parents decide to abort the child is being viewed as an inequality to the disabled community. Secondly, certain adoptions are put on hold since the biological parents chose to not carry the unborn child through the entire pregnancy, however, the surrogate mother wants to carry the child through the entire term. Lastly, research shows that the results can be a false positive, so unintentionally the parents decide not to keep the unknown, but healthy baby.

Genetic testing has become a highly controversial issue among both the general population and the scientific community. It is a process that exposes a person’s entire genome sequence, allowing it to be read and evaluated to identify potential risks for genetic diseases or diseases that could be passed onto offspring (Holt Productions, 2012). With thousands of genetic tests already being used, and more being established, it seems logical to put this growing technology to use. Some agree that it is a person’s right to know and understand his or her genetic makeup. However, others argue that, despite the benefits of genetic testing, caution should be used to carefully inspect the risks associated with this new technology.

In the following, I will attempt to map out the current debate as it applies to genetic screening and testing, with special attention paid to the criticism offered by disability studies theory and disability rights advocates. I will begin with a brief overview of the traditional arguments in favor of reproductive liberty and a more permissive stance toward the use of genetic technology. This will include a discussion of autonomy as the underlying ethical principle at work, and the related focus on informed consent as both a guiding axiom and common target of criticism. The principle of beneficence is a crucial underlying

<br>4. The rights of knowing someone's own health status and keeping that information private to oneself should be provided to all members of a society. Only the individual should have full access to information about his own genetic constitution and others should be prevented by legal regulations. As we have said above, the results of genetic tests can sometimes be detrimental to the individual. If a person does not want to know the information, its nobody's business nor right to declare it. This includes even not explaining favorable test results without the individual's request.

If the genetic information is only accessible to the individual then there is a decreased chance of such discrimination occurring because the information is disclosed to who the individual wishes to. Genetic information can raise questions about personal responsibility, personal choice versus genetic determinism, and concepts of health and disease. Personal factors, family values, and community and cultural beliefs can mould the reactions to these issues. For example the response to the genetic information and suggestion from physicians after the test will be drastically different in a society where traditions and religion determine life choices, such as India, than to a more individually liberal society like the USA. Even in a progressive society that has had specific ethnic groups for multiple generations disparities with medical technology are common. A study conducted, using the national representative data, in the USA with the sample that consisted of 1724 men and women of non-Hispanic whites, Latinos, and African American background. Results exposed significant differences by racial/ethnic groups in knowledge and concerns about the potential misuse of genetic testing. Significantly higher levels of mistrust in a physician and the medical system was a common thread within minorities. The genetic tests can be a way of ridding anxiety attached to the assumed inheritance of genetic disease due to family background whilst for others the genetic test reveals their reality. The results can have a great deal of a psychological impact upon the individual. The possibility of developing a genetic disease alone can create anxiety within some. The psychological impact from the results revealed is another issue that society is concerned about. A

Nor is autonomy impacted by setting limits on the scope of the testing to eliminate frivolous testing. Even though eye and hair color can be tested, “the genetic counselor can help ensure that the patient makes her own decision about whether to accept those values and undergo testing, but she cannot proclaim her complete neutrality with respect to them” (Wachbroit and Wasserman pp. 4).

I think in an advancing society it is necessary but, with limitations. A person has a right to know about their future children and is entitled to avoid anything they may consider to be too troubling to handle; however, patients should be made aware that the results may be negative or defamatory. But, access to this kind of information requires a serious amount of sensitivity and the person handling it should be aware of this and understand that the only ethics that have entitlement in this situation are the subjects’ . I think it’s all very delicate and subjective. There should be many considerations when having a child or dealing with one’s genetics but, the most important one is quality of life. As long as the ethics support that they are not only beneficial but,

Many parents claim that they should have the right to have their children tested for any late-onset diseases if that child is at risk. The professional consensus of most medical professionals (Kopelman), do not agree and claim that testing children for late-onset diseases not only affects the child in a negative manner, but also negatively influences the parents’ relationship with that specific child (Davis). I argue that children at risk for late-onset disorders, such as Huntington’s or Alzheimer’s disease, should not be tested for such genetic markers at the request of their parents.

One of the most captivating chapters throughout her book, Genetic Dilemmas, is her argument against childhood testing for late-onset genetic diseases. She also discussed how parental knowledge of the results violates the child’s right to an open future and can strain the relationship between parent and child. Yet, Dena Davis has been criticized for these claims in many publications, including a popular article by Mary Ann Sevick. In this paper, I will argue that children should not be forced to know their fate and show that the critics are not looking at the bigger picture.

Tarini BA, Goldenberg A, Singer D, Clark SJ, Butchart A, Davis MM. Not without my permission: parents’ willingness to permit use of newborn screening samples for research. Public Health Genomics. 2010;13(3):125-130.

Genetic information can be identified at any point throughout a person’s lifespan from pre-conception until after death. In addition to heritable, biological information, family history, genetic test results, and medical records are also sources of genetic information” (Jenkins & Lea, 2005). We are put in a position to gather and retain information that could be utilized for a better future, but is confidentiality involved for the sake of profiting? Ask yourself, who should have access to genetic information? Who owns and controls it? How can families resolve conflicts when some members want to be tested for a genetic disorder and others do not?

Let’s retrace this article’s path. There exist distinctions between disease traits and other – e.g., culturally-influenced – traits. The value of culturally-influenced traits change; thus, parents cannot always be morally obligated to “what [they] have the most reason to do” when selecting children, because what is most reasonable in one time/place can be morally abhorrent in another. It is also problematic to claim that people should recognize and implement social institutional reform, instead of genetic selection, when social institutional problems are present – history points to the implausibility of this suggestion. Finally, allowing unfettered, private genetic selection is likely to lead to adverse or unknown outcomes: a) It could lead to the selection of traits that are by no justifiable means ‘best,’ traits that drive homogenization, or both; and b) New genetic technologies have the potential to permit near-unlimited manipulations, the implications of which we don’t know, and thus, cannot allow