Research Paper: Genetics Technology Where the Buck

Pages: 7 (2679 words)  ·  Bibliography Sources: 7  ·  Level: College Junior  ·  Topic: Disease  ·  Buy This Paper

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[. . .] The bottom line is that a patient's right to confidentiality need not be violated just to inform his relatives of his carrier status. The ethical principles of beneficence and patient autonomy impose that specific informed consent for disclosure to third parties. This specific consent also identifies the patient or person to whom the information may be revealed, the specific information and the probable uses of the genetic information being revealed (CEJA).

Reflection

Lawsuits have arisen against healthcare professionals on account of a defect or disorder in a fetus, which is discovered through prenatal testing or not detected or suspected prior to conception by means of screening, counseling or diagnosis of the parents (Crockin, 2002). These are mostly claims of "wrongful birth" and "wrongful life" claims, often interpreted by the courts simply as negligence, professional negligence or medical malpractice. "Wrongful birth" claims are raised by parents who contend that they would have aborted or never conceived the defective child if the health care professional promptly informed them about it. "Wrongful life" claims are raised by the defective child, or someone in his or her behalf, that if it were not for the health care professional's negligence, he or she would not have been born and suffer the consequences of the defect or disorder (Crokin).

The Trosacks couple was both raised as Catholics who, at this time, do not consider abortion as an option. Their physician is assumed to have informed them thoroughly of what can be expected from the continuation of Rita's pregnancy and the consequent physical and mental deterioration of her fetus. This also appears to be their first child. Repeat pregnancies may not be advisable as they are advancing in age. The risk of developing Tay-Sachs disease also remains at 25% with each pregnancy as both Rita and Peter are carriers of the mutated gene. If they change their minds and decide to abort the fetus, they must contend with their Catholic belief that abortion is always murder. They must live in that guilt for as long as they observe Catholic doctrines as well as with the memory of losing the only child they will ever have or should have on account of their double carrier status. If they choose to continue with the pregnancy, there are other hard realities they must also contend with.

There are no cures for Tay-Sachs at present. Their child will develop the symptoms and will not grow or live like normal babies and children. They can rely on the support of health care professionals only to reduce their child's pain and suffering through symptomatic medications and some techniques (CEJA, 1991). This is in pursuit of the principle of beneficence. The child will be completely dependent on his parents for all his needs and his condition has no promise of improvement. Progressive physical and metal deterioration is expected even if he grows up and matures. But in most cases, a child with Tay-Sachs dies at age 4 or 5. If the Trosacks prefer to suffer the consequences of their child's disease than take its life, they must be prepared to unceasingly provide him physical and mental care throughout his short life. They may decide to endure it and take the chance that a cure will eventually be discovered while their child lives. The availability of health and support resources is another area of concern for the Trosacks. These resources may not always be adequate, accessible or affordable to them in the long-term even if they are so now as yet (CEJA).

And if the Trosacks' defective child manages to survive the symptoms and lives long enough, he may file a wrongful birth claim. Or someone compassionate may do so in his behalf. Most cases involve genetic impairment. The majority of States refuse to recognize claims like this, however, out of an unwillingness to weigh the value of a defective life against the value of non-existence. The few States, which recognize it, award damages for extraordinary expenses in managing the disease, but not for having been born with it.

Advocacy for Mrs. Trosacks' Decision

Her decision to proceed with the pregnancy is an extremely difficult one because of the certainty of Tay Sachs. But it is much more difficult for her to abandon her faith and her true feelings about the pregnancy if she terminates it in order to prevent a defective child. Her conscience prohibits abortion as murder and she will have to live with it if she decides to terminate. She chooses both her faith and the life of child, though defective. Her belief that it is the right choice to make enables her to cope and wait for some possibility, no matter how small or distant, that there may be some cure forthcoming. Science is not final. She will take that chance and make the necessary preparations to enhance the possibility of an improvement or a cure. She will be better able to care for her pregnancy, her child when born and herself if she lives in comfort with her conscience. She will allow possibilities rather than stop all of them by choosing an abortion.

The couple can be assisted to contact pro-life organizations for emotional and moral support in their decision to continue with the pregnancy despite present odds and risks. Then they can obtain all possible medical support to optimize Mrs. Trosacks' health to insure the best possible gestational conditions for the child. In addition, they can be assisted in contacting health care providers who will mostly be called to provide physical, financial, material and psychological support for the child when it is born. Meantime, the other affected members of the families of the couple will be informed about the situation and asked to obtain their individual genetic tests so they can make their own decisions for themselves about the likelihood of having their own defecting offspring.

BIBLIOGRAPHY

CEJA (1991). Ethical issues in carrier-screening of cystic fibrosis and other genetic disorders. CEJA Report. Council on Ethical and Judicial Affairs: American Medical

Association. Retrieved on October 24, 2011 from http://www.ama-ass.org/ama/pub/upload/mm/369/ceja_1191.pdf

Committee on Bioethics (2001). Ethical issues with genetic testing in pediatrics. Vol 107

# 6 Pediatrics: American Academy of Pediatrics. Retrieved on October 24, 2011 from http://aapolicy.aappublications.org/cgi/content/full/pediatrics.107/6/1451

Crockin, S. (2002). Overview of court decisions involving reproductive genetics. Genetic & Public Policy Center. Retrieved on October 24, 2011 from http://www.dnapolicy.org/resources/Overviewofcourtdecisions_Crockin.pdf

Jenkins, J. (2011). Ethics, ethical implications of genetic information. The Online Journal

of Issues in Nursing: American Nurses Association. Retrieved on October 24, 2011

from http://www.nursingworld.org/ANAPeriodicals/OJIN/Columns/Ethics/EthicalImplications ofGeneticInformation.aspx

Lagay, F. (2000). Why physicians should know the legal and ethical issues raised by genetic information and technology. Vol 2 # 11 Virtual Mentor: American Medical

Association. Retrieved on October 24, 2011 from http://virtualmentor.ama-assn.org/2000/11/gnth1-001.htm

NINDS (2011). Tay-Sachs disease. National Institute of Neurological Disorders and Stroke: National Institute of Health. Retrieved on October 24, 2011 from http://www.ninds.nih.gov/disorders/taysachs/taysachs.htm?css=

Sheth, K., reviewer (2011). Tay-Sachs disease. PubMed Health: National Center for Biotechnology Information. Retrieved on October 24, 2011… [END OF PREVIEW]

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