The Newborn Screening : Genetic Diseases : Blood Samples Collected Bill No

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.

There are two main ways genetic testing places a constraint on a child’s right to an open future. The first of these is that the revelation of a child’s disease status can change his life narrative and the way parents and others treat him, and substantially alter his or her life’s trajectory (Davis _____). Parents may feel guilty or shelter their not-yet-sick

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

The inclusion of genetic testing into Electronic Health Records impacts the overall healthcare of patient’s because it informs the physicians and other medical professionals the selection of effective treatment or preventive action. A manager’s responsibilities are to implement policies to protect the confidentiality, privacy, and security of genetic tests results and information of patient’s. Policies contributing to potential discrimination acts are also advised because genetic/genomic testing reveals a patient’s physical characteristics.

Even though the parents gave consent for the blood to be taken, the consent was only given to screen for diseases not anything else. Furthermore, it is not fair to use the blood in other ways all because the parents originally gave consent for one thing. Even with the strict oversight and approval process for research with human subjects the gap of complete informed consent allowed for these situations to occur. With the Indians, they were not fully aware of what they were consenting to. No one helped them understand it was more then just the diabetes research in which their blood will be used for. With the infants, the parents gave consent for the blood to be taken for the screening, but they were not informed that the blood would be kept and used for other researches. They took advantage of the parents wanting to make sure their baby was healthy in order to use the blood for

However, the initial blood test should not be made mandatory under our current healthcare system because of the “$84.50 fee for screening”.4 Mandating a charge like this places a further burden on the disadvantaged, preventing a small but still considerable portion of the population from accessing the treatment. Consequently, mandatory screening should be ethically required in the sense that as it would be unethical to not give every infant an equal opportunity to health, but cannot be, as the cost for the treatment would make the program a potential burden.

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.

I enjoyed the concepts prosed in Bloodchild, even though it was gruesome to read about the possible trade that may be associated with sharing a single planet with aliens. I found it easy to think about the feelings of the humans, but I couldn't quite grasp how T'Gatoi and her species felt after inseminating humans. After reading and initially experiencing horror and disgust, I began to think that T'Gatoi's felt compassion for Gan's family and the rest of the humans she had to treat cruelly in order to continue the life of her race. For this reason I think T'Gatoi used the sterile eggs and stings as a sedative for the humans in order to soften and dull the reality of what was truly occurring to them. For example with Gan's mom, T'Gatoi lulled

New born screenings have been implemented since the 1960s. More 44 states advocate for 21 of 29 screenings and yearly newborns go through screenings for genetic defects. The intention of new born screenings is to identify genetic conditions before traits occur for early treatment. For instance, PKU screenings pinpoint infants therefore a calculation of diet is given to prevent mental retardation. Unfortunately, not all conditions are treated the same with the use of dietary measures, it even goes as far as medical procedures. Diagnosed defects include developmental delays, neurological defects and increase in morality. Even more some are left without treatment being of its rare condition and become therefore become a patient in waiting. In

The lack of unity in the NBS practices does present some ethical issues. If the informed consent is required before screen is completed, and the consent form binds that the newborns information is place in a public database it may violate the wants of the parent. Often times the consent forms are too dense with knowledge and briefly explain by the unit clerks to the parents (Kenner and Lewis, 2013). What happens if the consent form is required prior to testing, and the parent does not agree with all the legal implications within the form? It forces the parent to adhere to what is outline in the consent form, without much room for negotiation to which could impact them in the future (i.e. public records and health insurance rates) (Black,

Brody, Jane E. "Breakthroughs in Prenatal Screens." New York Times. 08 Oct. 2013: p. D.5. SIRS Issues Researcher. Web. 02 Feb. 2014. This article explains the unique development in prenatal screenings. Down syndrome, a chromosomal abnormality disease, occurs in about one in every 700 births in the U.S. At 10 weeks of pregnancy a mother’s blood contains about 10 to 12 percent of the DNA that belongs to the fetus. With the use of a new screening test the blood can be tested in order to see if the fetus will acquire Down syndrome. This test is far more accurate and less invasive than any other tests on the market. If the test comes back positive the woman will then decide is she would like to undergo an amniocentesis or a chronic villus sampling (C.V.S.). In pre-modern times royal families often tried to have intermarriage between relatives. This would allow for a pure blood line which was most often seen in Western Europe. As a result there were many deformities and birth defects with the infants born. Due to the lack of technology, these diseases could not be foreseen.

Pre-natal genetic diagnosis was first used in 1989, after the introduction of in vitro fertilization. In the first cases, pre-natal genetic diagnosis (PGD) was used to determine the sex of patients carrying certain X-linked genes. PGD is now more widely used for selective pregnancy termination and can allow for sperm selection in order to display certain genes or prevent certain genes and diseases from developing. When it comes to the topic of pre-natal genetic diagnosis, one controversial issue has been whether there should be limits on what can be controlled or changed about a child through embryo screening and what. On the one hand, Christians argue that no one should screen embryos because they are trying to “play God” and others oppose PGD because it is killing more lives than it is bringing into the world. On the other hand, couples like S.M and C.D, a lesbian couple from the United States contend that PGD and embryo screening should be used to use a deaf sperm donor so they could have a deaf children. My own view is pre-natal genetic diagnosis can be used to prevent a children from being that would have a genetic defect, but should not be allowed to purposely have a disabled child.

Genetic screening is a current medical practice in which a parent may proceed with testing for specific genetic and chromosomal disorders which may affect offspring during & after parturition. If tests are performed, one gains knowledge of any high risk genetic or abnormalities which may be present and carry a high risk of altering an individual's health.

The exam given is a genetic exam, doctors are required to speak to the parent to receive it the beginning stage of pregnancy, also referred to as the first three months (Nierneberg, By Cari. "Prenatal Genetic Screening Tests: Benefits & Risks.") The test is completed and processed by recording the level of certain substances in the mother's blood and receiving an ultrasound (Nierneberg, By Cari. "Prenatal Genetic Screening Tests: Benefits & Risks."). Exams given to the mother is not what is physically harmful, but is what leads to the harm. Parents take this information given, whether it was good or bad and talk to their spouse. To the parents given bad information about their soon to become child, they get the option and are questioned by

2. Is it right to use genetic screening as a tool to keep tabs on their prospective enrollees?