The Ethical Dilemmas of Genetic Testing for Huntington's Disease

Just as most bioethicists and medical professionals agree that genetic testing for curable or preventable diseases is beneficial to patients, they also agree that genetic testing for incurable and untreatable diseases, such as Alzheimer's, is useless (Hubbard & Wald, 1999; Ridley, 1999). Although a negative test may afford a person the reassurance that he or she will not develop the disease, a positive test could be a death sentence. For example, since 1986 people who are at risk for Huntington's disease have had the option of being tested for the mutation on chromosome 4 that is linked to the disease (Ridley, 1999). In Genome, Nancy Wexler, a woman who set out to identify the Huntington's gene in the late 1970s, relates the story of a woman who asked doctors whether or not she had Huntington's disease (Ridley, 1999). Although the doctors found that the woman was showing subtle signs of the disease, she could not detect these signs herself. The doctors, rather than telling the woman that she had the disease, let her believe that she was well and did not have Huntington's disease. After the woman left the doctors' office, the woman's friend came into the office and asked the doctors what they had said to the woman, because earlier the woman had told her friend that she

Danville Airlines has created an ethical and legal dilemma by not being accurate, precise and clear on how they are doing medical testing, causing undue stress and potentially career-ending circumstances for David Reiger, one of their best pilots. What Danville did was illegal and unethical due to negligence. David Reiger has every right to sue them to continue flying, and the medical evidence suggests that the Huntington's disease gene can be dormant for decades before being active and changing a person's nervous system (Darden, 2004). The company has violated the 1974 Privacy Act, the Heath Insurance Portability and Accountability Act of 1996, and the 1990 Americans With Disabilities Act. As is best practice with the nascent, emerging field of genetic testing, Danville did not warn Reiger of the testing taking place, did not get his permission, and didn't even have a process in place for dealing with pilots, whom the traveling public relies on for safe transport, when they are tested positive for these types of diseases (Murry, Wimbush, Dalton, 2001). Clearly Reiger would win any lawsuit, the collateral damage to Danville being the lack of oversight and gross negligence in managing health screening.

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

The mother may decide to conduct a genetic test or speak to her children about the potential risk of inheriting Huntington’s disease, this is an option a family may have knowing the medical genealogy.

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 gene for Huntington’s disease is fatal, and if passed down, the offspring will develop the disease at some point in their life ("Genes and Human Disease"). This means that if one parent is affected, which in this case happens to be Alice and Nancy’s mother, there is a 50% chance that each of them will acquire the fatal gene. Alice also learns that her mother’s father and her three uncles passed away due to Huntington’s. This heritable nature of Huntington’s causes many ethical issues for Alice, which will be discussed next.

Given that some specific genetic disorders are more predominant in a population group can result in judgmental aspects toward that particular person or group. For example, a person that has mention publically that they are a carrier of Huntington's disease can experience the perceptions of discrimination from insurance companies, relatives and in social settings; although they may not be showing any symptoms of the disease. Although this disease may not occurs in one population group, the duration may only give a person 15-20 life span after diagnosis which could affect the way a person could be considered in a long term approach in

The use of WGS brings to light several ethical issues. First, the majority of patients that come for initial diagnosis are minors. Therefore, it is usually a parent or guardian that consents to the any testing which raises the issue of what results to report back to the patient and family. The European Society of Human Genetics has recommended to filter out known variants that have little or no clinical utility. While the American College of Medical Geneticists states that there needs to be a respect for autonomy, report all incidental findings regardless of age, and proposes patient’s decision shall apply to the entire set genes deemed actionable. Although, the Canadian College of Medical Geneticists recommends communication to parents about all results of a clinically actionable conditions that will present during childhood; furthermore, adult-onset should not be disclosed unless it could prevent harm to the health of the parents or other family members and if the parents desire the disclosure (Szego & Zawati, 2016).

Huntington's disease affects people in different ways. One member of a family may have more trouble with clumsiness while another may have emotional outbursts. Moreover, symptoms of Huntington's disease in the same individual change over time.

Genetic testing, do we or don’t we? This is the question. Advances in science, as they call them, are able to screen for some types of genetic disorders. Although this type of testing has allowed the opportunity to test couples who are at risk for Tay-Sachs and others who are at risk for Cystic Fibrosis, Sickle Cell Anemia, and Huntington’s disease there are still vast limitations. There is a potential for the loss of privacy, test errors, psychological and social stress. Overall genetic testing has the potential to be wholly deterministic and results in information that is simply probabilistic. Errors could occur and result in severely misreading test results deluding individuals about their personal health. The contingency surrounding genetic

Huntington’s Disease is a late-onset fatal genetic disorder that results in the gradual deterioration of nerve cells in the brain. Typical symptoms include involuntary movements, loss of muscle control, depression,

I believe that testing an unborn baby to see if they hold the altered HTT gene and are at risk of developing Huntington’s disease is unethical. I am of the opinion that a human’s life begins at fertilisation, and that taking a genetic test that could potentially harm the unborn baby is a very serious decision. Terminating a pregnancy based on negative genetic test results is devaluating the lives of babies, and creates this image that all babies should be without

Huntington’s disease is a neurodegenerative disorder that slowly breaks down somatic tissues. This degeneration causes a mass amount of chorea, change in mental functioning, change in behavior, decreased memory, along with other serious psychological problems. Since the mechanism of the disease is still not fully understood, there is no cure for the disease, but there are several therapies and medications available. All of the medication and treatment available only help to manage symptoms; they are just stalling the progression of the symptoms but not the overall disease.

Imagine caring for someone with constant jerky movements, and every word he or she attempted to say came out with a slur. Something as simple as speaking is an everyday struggle for an individual with Huntington’s disease. This is just a brief description of obstacles a person may experience with Huntington’s disease. Huntington’s disease is a genetic neurodegenerative disease that causes defects in a person’s cognitive thinking, movement, and physiological stability. (Ersoy 2007) This disease has said to affect one in ten thousand people in the United States, regardless of race, gender, or ethnic background. (Ersoy 2007) Males and females with this disease are affected by at least one of their parents, meaning