Newborn Screenings And A Systematic Framework

   The Human Genome Project is the largest scientific endeavor undertaken since the Manhattan Project, and, as with the Manhattan Project, the completion of the Human Genome Project has brought to surface many moral and ethical issues concerning the use of the knowledge gained from the project. Although genetic tests for certain diseases have been available for 15 years (Ridley, 1999), the completion of the Human Genome Project will certainly lead to an exponential increase in the number of genetic tests available. Therefore, before genetic testing becomes a routine part of a visit to a doctor's office, the two main questions at the heart of the controversy surrounding genetic testing must be

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

Genetic testing has brought about many changes in the way many couples look at conceiving and raising families. Through genetic testing you are able to screen for the increased chance that a fetus may have one of many congenital disorders, or even identify gene changes that are responsible for a disease that has already been diagnosed (Genetic Testing, March 2015). Unfortunately genetic testing is not always exact, in some cases giving parents false negatives or false positive results. Even if the results are accurate, there is the burden of knowledge once you know the results indicate a genetic abnormality such as Down’s syndrome. While caring for a 2 year old male patient with developmental delays and anotia, I learned that genetic testing had been started but never completed on the child. Genetic testing could help to identify genetic disorders that led to the child’s developmental delays and possible future disorders that may develop. The ethical dilemma I will be discussing to the ANA Ethical dilemma of the impact of informed consent of genetic testing on children for adult onset diseases and disorders.

In chapter four of her book Genetic Dilemmas, Dena Davis asserts that it is unethical for parents to subject their children to genetic testing for the markers of adult-onset genetic diseases because it places an unfair constraint on a child’s right to an open future. It both removes the child’s ability to choose whether to be tested as an adult and has the potential to negatively alter the overall trajectory of their lives. While the current consensus amongst medical professionals is that such testing should be prohibited (Davis, _____), many concerned parents correctly point out that discouraging such testing creates a conflict of interests between the “beneficence model of patient care and the rights of parents to their own autonomy”

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.

Indiana’s newborn screening program, codified at Indiana Code Chapter 16-41-17, requires hospitals to take a blood sample from every infant born under their care. It is a public health measure meant to check the newborns for certain diseases or conditions. Blood is collected in five circles on a newborn screen card, otherwise known as a dried blood spot (“DBS”) sample, and then given to a lab to test. The Genomics and Newborn Screening Program of the Indiana State Department of Health (“ISDH”) perform the tests—they punch small holes out of the DBS sample, often not using all five circles. There are no explicit directions on what to do with the remaining DBS cards, but from 1991 to June 2013 retained and

Soon after the child is born, several drops of blood samples would be collected. Additionally, parents’ or legal guardians’ written consent is necessary prior to screening. The consent would include detailed information regarding the testing program, sample storing process, retention, and future research use. According to the bill, legal guardians and parents of a child, or after 18 years, the newborn child would have a chance to request the department not to use the samples for research purposes and/or destroy the samples. The bill would help to determine phenylketonuria, the hereditary and congenital diseases, including, but not limited to, Biotinidase deficiency and cystic fibrosis (AB-170, 2015). The early prevention process would help to determine the causes of intellectual disabilities or physical defects. Furthermore, the process

Twila Brase, a public health nurse and president of the citizens’ council on Health Care who is aware of new born screening as the largest single application of genetic testing in medicine as a challenge that might result into an explosion of the return of Eugenics, issue of the privacy and sometimes involuntary genetic research. She addresses herself to physicians, medical researchers, and the interested patients in the article: “Newborn Genetics Screening Runs the Risk Violating Rights”, warning them that genetic testing might cause future disasters as the government with the help of researchers, they might eliminate, the people who do not meet their (eugenicists) point of view of being healthy. She critically discusses how the government,

The third study reviewed was written by Shyang-Yun Pamela K. Shiao and Ching-Nan Ou (2007), and is titled Validation of Oxygen Saturation Monitoring in Neonates. The objective of this particular study was to validate whether the clinical monitor was correct in recording oxygen saturations, comparing the results to blood samples.

In 1993, the average age for identification of a hearing impairment in the United States was approximately 3 years old (NIH, 1993). Consequently, the first three years of a child’s life are most important for speech and language development, and therefore, crucial years for detecting hearing impairments. Without the ability to hear, children will not develop speech or language skills. Therefore, a lack of efficacy in previous protocols fueled the innovation of “universal newborn screening.”

This paper focuses on Neuroblastoma in infants and toddlers. The title is Screening of Infants and Mortality Due to Neuroblastoma. The focus of this research paper and main hypothesis is to determine if early detection of neuroblastoma can decrease the mortality rate in infants (Woods et al., 2002). The research was conducted by the Quebec Neuroblastoma Screening Project (QNSP) from Quebec, Canada. The screening covered a five year period for infants born in Quebec from May 1, 1989 to April 30, 1994 (Woods et al., 2002).

If the school has made reasonable efforts, two attempts to contact in two different methods, to obtain consent from parents for the initial evaluation, the school can move forward with the initial evaluation through utilizing mediation or requesting a due process hearing. They also have the right to not pursue the initial evaluation in specific cases and in others they are not permitted to utilize due process or mediation.

Like my opinions abortion, I do not find value personally for genetic screening, although I do respect those who find comfort in knowing. Opting to not have my children genetically screened during any of my pregnancies was

Every state within the United States runs its own newborn screening program which test for at least 30 serious conditions which are treatable if caught early. The program is designed to save lives and uses the dried blood sample collected during the first week after birth. The blood sample is used to measure the presence of disease markers. The current newborn screening programs are fast, cost effective, and accurate in identifying disease before symptoms appear. Genome sequencing cost have now decrease to a price range like other complex medical test to be readily available for clinical application. It is possible for genome sequencing to replace or supplement the existing traditional panels for newborn screening tests. The