Direct-To-Consumer Testing And Genetic Diseases

   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.

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.

<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

As a more cost-effective practice, clinicians make use of a person’s family history, instead of genetic testing, to

I do not believe that “direct-to-consumer” genetic testing is wise, especially without the involvement of trained professionals or set guidelines. As mentioned in the prompt, some of the risks that I believe are important involve the ethical and social challenges direct-to-consumer testing can create as well as the complexity of certain genomic tests.

In the video, Personal DNA Testing, Neil Tyson states “knowing our genetic risk for disease will actually lead us to longer, healthier lives” (Tyson). However, there are various negative and positive factors of genetic testing that make it questionable. For example, individuals that are aware of hereditary diseases should consider this type of tool, so they can prevent it. On the other hand, people do not know if the results will be accurate because error is possible. It is important to research this type of test before requesting approval.

Today consumers are able to purchase multiple types of over the counter test kits in a drug store. For example, drug store shelves hold over the counter drug test kits, pregnancy test kits, urine dipstick analysis kits, and over the counter genetic test kits. Therefore, why are Genetic test kits becoming available and placed on drug store shelves? Well, for one thing, genetic test kits are used in screening an individual’s gene for high possibility of health aliment noted Rob Stein (2010). Therefore, genetic test reveals a high probability of developing a health aliment (e.g. diabetes, obesity, hypertension, hyperlipidemia, and cancer) based on individuals’ genes. Indeed, genetic testing is beneficial in encouraging consumers in preventing future health aliments; but why should the government evaluate over the counter genetic testing? Also, why should consumers become educated on genetic testing?

While the consumers are optimizing for their health, another stakeholder that plays a critical role are the genetic testing companies. To investigate the growing market for lab-developed genetic tests, it is important to examine how companies are developing, marketing, and selling tests to understand the reasons behind this immense growth. Usually the mission of the companies that develop LDTs says that they aim to “empower people so they live healthier, longer” in the case of Veritas Genetics, are “dedicated to saving lives and improving the quality of life of patients worldwide” in the case of Myriad Genetics, or another mission statement heralding a patients-first mentality. Underneath this patients-first ideal, there is inherently a tension

The laboratory reports the test results in writing to a person's doctor or genetic counselor, or directly to the patient if requested. Newborn screening tests are done on a small blood sample, which is taken by pricking the baby's heel. Unlike other types of genetic testing, a parent will usually only receive the result if it is positive. If the test result is positive, additional testing is needed to determine whether the baby has a genetic disorder.However,before a person has a genetic test, it is important that he or she understands the testing procedure, the benefits and limitations of the test, and the possible consequences of the test results. The process of educating a person about the test and obtaining permission is called informed consent. (Reference, 2016) .The genetic screening is nowadays worldwide obtainable to support notice the inherited conditions like cystic fibrosis such as to know if the families are delivery the illness .In addition, the rising capacity to recognize embryos with specific traits earlier than they are implanted in the woman`s womb have led to concerns about so called “designer babies”

The use of genetics and reproduction sciences has been an ongoing debate for years. Some argue that the use of genetics and reproduction sciences are unjust, unethical and inhumane. The other side of the debate argues that the use of such sciences is a “life saver”, that it will improve medical advancements, health, and society. Genetics and reproduction sciences are used for informing individuals about possible outcomes, abnormalities, and genes of current and future pregnancies. Genetic testing analyzes chromosomes, DNA, proteins, and genes to determine the presences of altering genes that cause disease or disorders. The sole purpose for using genetic testing is that is can confirm or rule out suspected genetic conditions. The test will help determine the probability of chance of developing or passing on the disorder.

Considering the technology of using genetic testing is a relatively new source, the test results often show false positives. When testing, less than 1% of a person’s genes is sampled (Hall). This statistic proves that gene testing does not sample a reasonable amount of a person’s DNA to prove he or she posses a disease. When a woman is pregnant, she is given the choice to have her child’s genes tested for possible illnesses. However in multiple cases, many parents are given incorrect results causing them to terminate the pregnancy. For example, 85% of parents who learn that their child will have Down’s Syndrome abort the baby (Camosy). When in reality, considering the amount of false positives, these babies may be completely healthy but are never given a chance of life. The