Since scientists found out the sequenced the human genome in 2003, a number of studies of genetics and genomics have greatly contributed to determining the multiple factors of how acute and chronic diseases develop and progress, such as cancer or cardiovascular disease. Cancer is no longer a single disease, which occurs combined with other different disease-causing factors. The sequencing of the human genome is a powerful tool to diagnose and treat disease in a medical environment. This rapid advance in genomes studies can help many people to prevent and to treat the gene-based diseases, and healthcare professionals also are urged to use this knowledge in practice. However, these advancements in genomics are accompanied by many legal, ethical, …show more content…
These ethical codes can be the foundation for many healthcare professionals to make decisions more effectively and rationally. Informed consent with regard to genetic testing takes a role as more than a signed document because incidental findings can take place during the test. Healthcare professionals should have more in-depth communication with patients. To manage this ethical, legal, and social issues effectively in genomic nursing, healthcare professionals should have appropriate knowledge and skills, so they can serve patients in better …show more content…
These secondary findings can also raise ethical issues of whether or not healthcare professionals should inform patients. I think that although patients have the right to refuse to be informed, the risk factor is not gone. Because the disease-causing gene still exists, patients need to learn the information and should be prepare for that. Healthcare professionals should inform patients before testing the likelihood of incidental findings, so patients are not overwhelmed by the discovery. Accordingly, informed consent should be handled in open communication with all possibilities uncovered. I think that healthcare leaders should set up guidelines as to how to manage the unexpected findings that can take place during genetic
When Hopkins wanted more blood samples from the Lacks, the doctors told Day that the blood sample would be used to see if they would be prone to develop cancer in the future; however, the true intention of the doctors was to see if the Lacks had something that can contribute to further HeLa cell research. Also, informed consent was not present in this case of Henrietta’s autopsy. Although Day did get a consent form, he did not fully understand the agreements written on the paper. If Day had known that Henrietta’s cells would be used in experiments, he would not have agreed. In addition, another important case of informed consent violation is the experiment done by Chester Southam.
Henrietta Lacks did not know that a tissue sample had been taken from her cervix, but the turning point in medical ethics was when researchers started injecting patients with cancer cells without their consent, so they could see how cancer spreads. After that, the government institutionalized medical review boards and informed consent laws. By law, informed consent means that the patient knows that the study involves research, the purpose of the research, the duration of their participation, procedure,
Paper 2 A person who owns a small portion of someone's genes may be the deciding factor on whether a person's illness is further researched or put on hold. Should a person be given this much power over our very genes inside us whose research could save lives and cure diseases? A physician, Michael Crichton, who wrote “Patenting Life” and a economist, John Calfee, who wrote “Decoding the Use of Gene Patents” both discuss this medicinal dilemma.
And although, these privacy protections did not cover genetic information, 12 years later congress passed the Genetic Information Nondiscrimination Act (GINA) to fill the gap. (Stump) The National Institute of Health’s (NIH) now requires strict ethical standards including informed consent from all researchers seeking funding. These are steps in the right direction but just like anyone working in the medical field would tell you, there is still more to be done to ensure complete patient privacy and informed consent is the norm in every branch within the medical community. Whereas it took many years for the medical community to acknowledge the violations and origin of Henrietta’s cells it reassuring to see the progress that has been made to stamp out bad ethical behaviors.
In modern society, most depend on the opinion of a trained healthcare professional to ensure a solution to an issue. But what does one do when the patient has no understanding of the potential harm and side effects caused? Henrietta Lacks, a black woman of low social status, faced the trials of cervical cancer without providing informed consent, or the “legal rules that prescribe behaviors for physicians and other healthcare professionals.” If Lacks had not been a crusader in informed consent, then the legacy of patient awareness would not exist today. Lacks’ story takes place in Baltimore, Maryland when she checks into Johns Hopkins Hospital, to address a pain in her lower abdomen.
One of the most important concepts in the medical field nowadays is informed consent. Unfortunately, a few years ago this was not the case. The lack of importance given to informed consent can clearly be seen in the novel The Immortal Life of Henrietta Lacks by Rebecca Skloot. The novel that tells the story of an African American woman with cancer (Henrietta Lacks) who doctors and researchers took samples of cells (HeLa cells) in her body (without obtaining informed consent from her or her family) to conduct research studies. Chester Southam was a well- respected cancer researcher and chief of virology at Sloan- Kettering Institute for Cancer Research.
Despite her family’s multiple health issues , they could not even afford health insurance. The study suggests that although it is still flawed to a certain extent, the informed consent process has substantially improved. Only 5.9% of the participants believed that they were not given enough information before deciding to participate. In Henrietta’s time, it was legal for doctors to take her cells and use them for research without her knowledge. Today, consent is required if the donor’s name is attached.
Medicine has changed in ways over the years that one might have never thought twice about having anything like that happen to them. People today have increased their knowledge overall about their health situations and how to treat themselves. Patients are stepping up and making decisions about their healthcare choices each day with physicians. And in this process it has turned out to be so important for people to understand what is truly being done before medical treatment is given. We have talked this semester about informed consent and how important it is that our patients understand the meaning of what they are having done.
Val Jones (2012) notes that the idea of the informed shared medical decision is “as old as the Hippocratic Oath”, but its widespread adoption would “create an extra layer of bureaucracy” (Jones, 2012). In order to understand the validity of this claim, it is recommended to take a look into the innovation. The main idea underlying the informed shared medical decision is that patients should be informed by independent consultants who would help them to make more accurate decision regarding medical interventions. It is suggested that experts hired by a health insurance company or government agency are more objective in their recommendations, when compared to doctors who are familiar with the nuances of an individual’s case (Jones, 2012). Despite the apparent validity of this assertion, the shared medical decision has a number of limitations that make informed consent a practice harmful for health care institutions.
Informed consent is defined as the knowledgeable and voluntary agreement given by a patient. Informed consent protects patient autonomy and endorses trust between the medical community and the patient. If a patient knows that they are lied to, or not told the entire truth, the patient will lose confidence in the medical community as a whole (Eval, 2011). If this non-education does happen, then the patient will not be able to make choices about the end of their life, medially or financially (Piper, nd). Personal integrity is gained when informed consent is used, as the person is making their own choices, not having their family or others make choices on their behalf, when the patient is excluded for the education of the disease (Eval, 2011).
In this case study the primary nurse, Amelia Wilkerson, is caring for a patient, Katy Palmer who has recently been admitted to the hospital for fatigue and abnormal lab counts. The patient asks Amelia for information regarding her diagnosis. Amelia has seen Katy’s results and knows that she has been diagnosed with acute myelogenous leukemia. The ethical dilemma seen in this situation is that it is outside of the scope of practice for Amelia to discuss Katy’s original diagnosis with her.
5. Ethical, cultural and social implications The Human Genome Project is rich with promise, but also fraught with social, cultural and ethical implications. We expect to learn the underlying causes of thousands of genetic diseases, including sickle cell anemia, Huntington disease, myotonic dystrophy, cystic fibrosis, and many forms of cancer—and thus to predict the likelihood of their occurrence in any individual. The dangers of misuse and the potential threats to personal privacy are not to be taken lightly.
Genetic counselling ethical issues in management of hemoglobinopathies Q1 describe the risk assessment in genetic counselling A1. Hereditary counselling is essentially the most central angle that can help patients in different ways it not just covers the zones of fitting and right determination additionally administration and steady treatment. essentially a hereditary guide is a man who connects with the patient and assists them with comprehension the upsides and downsides of the issue that the patient may be enduring subsequently this permits the patient to settle on the right choices in the opportune time which permit the patient to avert unanticipated outcomes. despite the fact that occasionally hereditary issue are not anticipated if
In spite of curing the, other mutations may also occurred. This significantly affects the growth of the child and may introduce physical and mental illness (Friedmann, 2000). Even though the idea of informed consent protect the patient right, the age of consent may hinder the possible treatment for the younger patient, who are not eligible for consent of medical
To continue gene editing to remove diseases can cure genetic cancer instead of chemo or radiation. Sadly some of us get cancer from genetics, but there is a solution to prevent cancer in the future. although we cannot remove the cancer gene from people with cancer, we can remove the gene from future