Newborn Bloodspot Essay

Lacks’s story is unusual because she lost her anonymity. But I’ve talked to other still-anonymous donors with strikingly similar experiences. Like the Lacks family, they’re proud they helped science. They believe tissue research is important, but they wish they’d been asked permission from the start, to avoid difficulties that followed: the shock of learning they were part of research, debates over who controlled samples, questions over profits. I’ve also heard from scientists and medical professionals who believe this transparency is overdue. And patients who want to control their tissues to, say, ensure their samples are used to study only their specific rare disease. So far, few of these people are part of the discussion. The Common Rule changes, like most such proposals, haven’t been widely publicized, and they’re laid out in a thick document even experts find confusing. But the Department of Health and Human Services has posted a brief summary and several explanatory videos. With few exceptions — like a public health emergency — the revised rule would require informed consent for research on all biospecimens, but not all genetic information inside them. How detailed that consent will be is up to researchers, but it can’t be less than “broad consent.” In a widely criticized move, the consent form template that would generally be required for “broad consent” hasn’t been released yet. Much of the debate has focused on what that form might look like, whether it can

At that time there was great flux in research oversight, so it wasn’t illegal though it was unethical to conduct a research without informed consent. A new law on Institutional Review Board approval and informed consent went into effect few days after the blood collection. So the family’s informed consent wasn’t gotten before they started conducting the research. They didn’t just cause them the pain of a needle stick, they invaded their privacy by uncovering their genetic information. The Lacks never knew what was going on, no one explained what the test was all about even if Hsu had claimed to have explained to Day. It was obvious that he never understood anything because of his lack of education. The family thought they were been tested for cancer, and there isn’t such thing as a test for cancer. Deborah kept

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

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

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

Mandatory screening is morally required, for if a parent were to refuse to get their child tested, they not only put the child at risk for rare diseases, but also others at risk if the disease is communicable. This not only denies the child proper health, but places a burden on the other children in the event that they did possess a transferable disease. Making the treatment non mandatory allows for refusal by any family, which would burden society as well. By mandating the test, the government assumes the initial burden of the infant’s wellbeing, but ultimately reduces the amount of resources it would have to invest in the infant if the disease matures undetected. For this reason, the cost on either the family or the healthcare system would be much greater later on.

Genetic screenings for newborns are mandated genetic tests that are performed on all babies after birth. Genetic screenings are used to determine the potential for illness, disease, or conditions that could be passed on, by one or both parents. The test performed can be found on the website http://www.wadsworth.org/newborn-screening/screened-disorders, but include a list of over forty current mandatory genetic screenings. Genetic screening is done to protect newborns from conditions, diseases, or illnesses, that otherwise appear normal and may not be visible at birth, but through the mandatory screenings, abnormalities to genetic disorders can be detected, so risks can be reduce, decision, interventions and treatments can be made, that might

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,

Many people argue over privacy and rights with providing DNA. With their arguments, they mention familial searching, or

Gross, S., & McKanna, T. (2015). The evolution of prenatal genetic testing. MLO: Medical Laboratory Observer, 47(5), 14. Retried from

Newborn genome screening is an issue that will becoming increasingly important in the coming decades. It has the potential to bring about many early diagnoses which could have a large impact on healthcare. This will only occur though if states can uniformly adopt a standard set of tests to be screened for. Equally important is the subject of uniformed consent. When we apply these variables to the 6 steps process we can fully compare the benefits and risks. This gives insight into taking the most appropriate actions in the future.

I think it is extremely interesting the newborn screening programs within the United States vary from state to state. In DC, newborns are screened for 52-55 genetic and metabolic disorders. In your state program screens for_______. The amount of test screened in not the only variation in the newborn screening programs. Informed consent, test result documentation, test results notification to parents or the healthcare provider vary as well from state to state. States screening “programs (45.1%) report only to physicians and require just their name (43.5%), an identification number (17.4%), a letter (26.1%), or a parent's signature (26.1%)… In 74.5% of programs, parents are notified but not asked for consent before collection of the sample; 19.6% neither notify parents nor obtain consent before screening” (Shlomit et al., 2002).

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

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

Establishing limitations can prevent controversial aspects of knowledge from being abused. This is seen today in certain medical practices, particularly in that of prenatal care. In the United States, noninvasive cell-free fetal DNA testing has received much scrutiny. According to The American College of Obstetricians and Gynecologists (ACOG) Committee Opinion Number 545, cell-free DNA testing of fetal “aneuploidy” utilizes plasma from the blood of the mother to determine possible abnormalities of the developing fetus. Cell-free DNA