Case Study H – Gene Therapy
Word Count: 999
Uni ID: 211322231
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3/14/2014
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Ethics are moral principles that govern a researcher’s behaviour on conducting of an activity; values that embrace ethics are; Voluntas aegroti suprema lex (The will of the patient is the highest law), Salus aegroti suprema lex (The safety of the patient is the supreme law), primum non nocere (First, do no harm) and fairness and equality.1 The National Statement on Ethical
Conduct (2007) encompasses ethical guidelines the Human Research Ethics Committees
(HREC) practices to identify ethical issues that may be prevalent in research proposals.2 The
HREC’s responsibility is to make sure participants …show more content…
A functional gene carried by the
“vector” repairs the faulty lymphocyte gene; and then inserted back into the patient to reconstitute their bone marrow to produce specific types of white blood cells that were formerly defective. According to researchers, gene therapy seemed more promising than the conventional treatment of unrelated donor bone marrow transplant since present lymphocytes identify self-MHC on repaired cells and prevent graft rejection; a high possibility via the transplant method.4
During treatment, the patient was unable to reconstitute bone marrow strongly and a top-up of modified gene was considered. However reports came in from Europe that 3 of their …show more content…
A child’s ability or competence to provide proper informed consent is often lacking and it’s the responsibility of the parents/legal guardians to provide the consent.2
Ethical dilemmas often arise when the judgment of the parents/guardians differ from medical professional as to what constitutes appropriate decisions "in the best interest of the child".5
Due to this in the past gene therapy trials have been restricted to only adults 6. It’s apparent
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from interviews with “HREC Chair A”; it was explained to the parents that if gene therapy wasn’t successful they could fall back to the conventional treatment; but gene therapy was a more optimal procedure.4 It was also understood the parent’s decision for electing gene therapy was acquired through information they had read on the internet; which may