The topic II\'m using is lupus do question 5 please also site where u got ur inf
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The topic II'm using is lupus do question 5 please also site where u got ur information from I got some resources there u can use please also type it on here rather than writing it on paper so I can copy paste u can email me if anything triniboom89@gmail.com What are the key ethical issues related to the disease. Are there KLSIs that have resulted from genomics research or testing? Are any of the KLSIs related the conditions that cause the health disparity for your disease? Choose at least one ethical, legal, or social issue related to your disease and discuss it. "Bioethics in Genetics" by Danielle Simmons, Ph.D. (Write Science Right) 2008 Nature Education Citation: Simmons, D. (2008) Bioethics in genetics. Nature Education 1(1) http://w.w.w.nature.com/seitable/topicpage/bioethics-in-genetics-42093 Policy, legal and ethical issues in genetic research, NHGRI http://w.w.w.genome.gov/PolicyEthics/Protecting your Genetic Identity: GINA and HIPAA, (2008), SciTable by Nature Education http://w.w.w.nature.com/scitable/topicpage/protecting-your-genetic-identity-gina-and-hipaa-678 Ethics and a specific disease search, i.e.x , with special attention to genetic aspects of the disease. Also, the organization specific to the disease many times will have issues related to this topic.Explanation / Answer
The ethical, legal, social issues related to the genomics research or testing:
Systemic lupus erythematosus usually due to autoimmune disease and due to Type II and II hypersensitivity reactions in the body result in butter fly shaped reddish clinical manifestations on the skin due to photosensitivity. Systemic lupus erythematosus (SLE) is an auto- immune disease characterized by the abnormal inflammatory responses towards the body’s own cells (autoimmunity). In the given case, the patient’s peripheral blood smear is presenting the decreased blood count for all types of blood cells, which is an important characteristic of lupus. The formation of immune complexes with the inner wall of glomerulus leads to the glomerular injury.
The major ethical & legal issues related to genomics research or genetic screening is "patient privacy". Patient autonomy must be respecting in maintaining patient confidentiality of data with adequate protection. Ownership of genomes is facing some ethical and social issues. The ethical issue to be concerned is about privacy and patient benefits. If a patient wants some information regarding that particular genome testing, they should approach that company, which may cause delay in response. Therefore, fidelity and justice should be maintained during the genetic testing. Patients may take advantage to for lethal issues if the clinical genetically screened data of any particular "lupus erythematous" (single nucleotide polymorphism) patient is disclosed outside without the written consent of patients followed by legal proceedings and prosecution.
Genetic testing & is performed for prenatal diagnosis to know any chromosomal or genetical -inherited abnormalities of human embryo associated with genetic polymorphism related "lupus erythematous". It has positive consequence, as some couples would like to avoid getting a baby with genetic abnormalities. However, there are negative consequences such as various "ethical and moral issues of prenatal diagnosis as explained below. Therefore, it is crucial to draw a line when conducting prenatal diagnosis of lupus erythematous finally, a couple must get legal permissions to undergo prenatal diagnosis
The following are the major ethical issue that normally found when performing a qualitative or quantitative research
(1) Stress; (2) possibility of deception (3) informed approval; (4) Debriefing issues are araised with the person who is agreed for clinical research to explain the research methods and ways.
For example, genome ownership of lupus erythematous research data from patients by the clinical research companies for the purpose of research has some beneficial effects at the same time also have some disadvantages. Ownership of genomes is facing some ethical and social issues. The ethical issue to be concerned is about privacy and patient benefits.
Advantages:
It encourages small industries to come forward to do research on patented genes to unravel of therapeutic stratagies for lupus erythematoous, because of less competence by the other companies during the patent period.
Disadvantages:
1. The main argument against the gene patenting responsible for lupus erythematous is that research progress will be delayed and may not be much effective because due to genome patenting other brilliant scientists cannot work on those genes.
2. If a patient wants some information regarding that particular genome testing, they should approach that company, which may cause delay in response.
If the genome information is collected by the national database information centers, this also faces some ethical issues. Though the data is collected for the purpose of genetic investigations regarding crimes or for the purpose of scientific research, it reveals the all the personal information of the patients including his disease profile. This put the patient privacy at risk. Genetic information storage might be an effective tool with strict regulations.
Are there any ethical issues with health disparity for "screening of genomic disease (viral mediated HSV screening, sexually transmitted disease) :
Yes, there are ethical issues with health disparity for screening of genomic diseases such as lupus erythematous as described below
Patients may take advantage to for lethal issues if the clinical genetically screened data of “patient with lupus erythematous” is disclosed outside without the written consent of patients followed by legal proceedings and prosecution.
For example,
A public health agency is considering a policy that requires everyone over the age of 18 to be screened for lupus. This policy would be used to determine those who are positive vs. those who are negative. Those who test positive will be required to undergo treatment and disclose their diseases status to any former and future offspring. However, ethical and economic concerns are such as “patient autonomy”, beneficience and justice
Patients “autonomy” must be respected and most ethical aspects because he/she must “serological screened” for a sexually transmitted disease and patient information must be kept with utmost privacy because ethical aspects of psychosocial and psychosexual effects may arise. Patients may get depressed as lupus erythematous, incurable, and life- long.
Patients should experience “justice” with respect to cost of screening independent of socio-economic status finally ethically make understanding & preparedness on the information
Patients must ethically treated with beneficence with respect to costs of the screening because for asymptomatic people, cost of the screening is very higher and they must be given counseling without getting fear & anxiety even in the absence of infection. Counseling must be given if there is a positive result and about the risk of stigmatisation
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