Genetic Information vs Privacy Essay

   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

As individuals become proactive in managing their health there has been an increase in the popularity of direct-to-consumer (DTC) genetic testing. This increase in popularity further coincides with testing prices declining as a result of advances in technology. With widely accessible testing available to the general public it has become more important for the individual to be well informed. There are various positive and negative consequences connected with all types of DTC genetic testing. Consequences and general knowledge which a individual should be informed on while they are considering getting the test done.

The medical advances being made feasible by genetic testing are very exciting. It is possible for people with predispositions for genetic defects to know in advance if they will have a healthy child or not. If they find out there is a problem they can choose to terminate the pregnancy or they can prepare in advance for their child's special needs. There is even new technology called Ex Utero genetic testing. This test is performed on eggs fertilized through in vitro fertilization before they are even put in the mother's uterus. Understanding genes in the developing human will help doctors understand the nature of genetic diseases and may lead to countless other medical breakthroughs. Though it is probably a long way off doctors may one day be able to manipulate genes. If this is possible some genetic problems may be cured.

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

Bodily privacy is a significant issue in Genetic Profiling, as it is a human right which is in constant need of law reform. Technology is continually advancing, and genetic

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”

<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

The Goal of the Human Genome Project is to obtain genetic mapping information and to determine the complete sequence of all human DNA by the year of 2005. The project started in 1990 and 180 million dollars are being spent on it annually. This adds up to a total of over 2 billion dollars for the 15 year budget. Of this 2 billion dollars budgeted, 5% is spent annually on the ethical, legal and social issues. This report focused on some of these issues.

When people experience genetic tests, privacy incorporates the privilege to make an educated, free choice about whether others may know points of interest of their genome, e.g., insurance, businesses, instructive foundations, spouses and other relatives, scientists, and social agencies. This incorporates a privilege to settle on certain conceptive decisions, for example, regardless of whether to utilize genetic testing. It likewise incorporates a privilege to reject treatment. A couple of court choices discover security for such data under the established precept of security, yet more ordinarily, security assurance against revelation of individual data is found under customary law tort principle. (7) Moreover, there is a federal privacy act, (8) and in addition state statutes ensuring

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?

In this paper, I will discuss the principles that permit disclosure of protected health information with or without the patient’s consent for each of the four categories, government agencies, legal agencies or representatives and research groups. I will also state whether I feel privacy safeguards are adequate to support those principles.

The fear of genetic discrimination is a phobia gripping many people around the world. People find themselves asking, could my genetic information raise my health bills? Could this cause me to be rejected from a job opportunity? These anxieties are causing people to lash out at genetic research, and ultimately the human genome project. People do not want our understanding of human genomics to advance. This is because the risks of the development of the technology could inflict on them. A major risk is genetic discrimination. I believe that genetic discrimination is wrong and governments should continue to prevent it because it is an invasion of privacy, it violates equity, and it could really hurt people with genetic