Huntington disease ethical issue

Regions of the brain have differing amounts and reliance on these types of neurons, and are affected accordingly.

Huntington disease ethical issue

Ethics, as a form of philosophy, refers to systematic reflection on the moral aspects of life and the associated conflicts that may arise,[6] while biomedical ethics involves the study of ethical issues that occur in research, medicine and society.

Traditionally, the paradigm that has guided medical geneticists is principle-based ethics. The symptoms include choreiform movements, progressive dementia, cognitive dysfunction and psychiatric problems; onset is generally in the 40s, although a few juvenile cases have been reported. The causative gene and genetic mechanism were identified in With this Huntington disease ethical issue, diagnostic, prenatal and predictive genetic testing became possible, and family members at risk could be informed of their status.

In the context of predictive testing for HD, the questions are whether it is ethical to provide individuals with information about their future health when no treatment for the condition is available, what the beneficence, non-maleficence and justice issues are, and if the service is offered, how it should be conducted fairly.

J G R Kromberg jennifer. The primary principles include respect for autonomy, beneficence, non-maleficence and justice. Another case where predictive testing was carried out on two young children, at high risk, by a laboratory at the request of an adoption agency and a doctor, with a view to giving information to the foster parents, also posed many ethical conundrums for the counsellor.

The ethical issues that arose in these cases are discussed in this paper. S Afr Med J ; 12 Suppl 1: In Huntington disease ethical issue brought an expert in medical ethics, Professor Ernle Young of Stanford University, USA, to South Africa to stimulate interest in ethics and genetics among medical practitioners and students.

Subsequently, inProfessor Jenkins was invited to participate in the second worldwide survey on ethics and genetics.

Huntington disease ethical issue

This survey included 36 countries, and in South Africa 16 of the possible 21 respondents completed the questionnaire.

The local results were reported by Kromberg and Jenkins[2,3] and integrated into the international report by Wertz. He covered ethical issues such as the commercialisation of genetic tests, making pre-implantation and prenatal diagnoses, testing of children and confidentiality.

From to Professor Jenkins was appointed as a part-time lecturer in Medical Ethics at the University of the Witwatersrand, and from onwards he has been an honorary lecturer in Biomedical Ethics now the Steve Biko Centre for Bioethics.

It therefore seemed appropriate to examine some of these issues in an article for this Festschrift.

The ethical principles that were evoked and the dilemmas that arose from these two actual patient consultations, in each of which the counsellor was one of us, will be discussed.

The first counselled by JGRK involved the problem of possible monozygotic twinning and whether one twin had the right to have predictive testing for HD when the other refused such testing. The second counselled by TW presented a dilemma associated with the genetic testing of children, where one parent had HD and the children were being placed into foster care, with the possibility of being put up for adoption.

Predictive testing for HD in possible monozygotic twins Some years ago, one Twin A of a pair of apparently monozygotic twin girls Twins A and B approached the genetic counselling clinic for a consultation regarding predictive testing for HD. Her mother was affected and had died a few years previously, and the patient, aged 40 years and in a stable relationship, wanted to know her status, as she planned to buy a house.

She added that she had an identical twin Twin Bliving in a distant city, who did not want testing, but their relationship was not close and they seldom communicated.

The predictive testing programme was explained to Twin A and she was told that she would have to see the HD team neurologist, to make sure that she did not have symptoms, and the psychiatrist, to make sure she was stable enough to take the good news that she did not have the HD mutation or the bad news that she did have the mutationafter which she would return to the genetic counsellor for further discussion.

Her partner, who accompanied her to this first session, was very supportive, understood the situation and promised further support whatever the result was. Twin A thought that she had a right to be tested, regardless of the reluctance of Twin B.

The client consulted the team members, who reported that she was a suitable candidate for testing. The twin sisters had also met, and they agreed that Twin B would consult her own genetic counsellor in the city where she lived.

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Later, this genetic counsellor confirmed that Twin B was adamant about rejecting testing and that Twin A should therefore be refused testing. The counsellor was giving precedence to the issues of justice and equality for both twins over the autonomy and rights of Twin A.

Twin A was very upset by this pronouncement, and was determined to return at a later date and demand the test. She stated that she was being controlled by Twin B, was being denied self- determination and freedom of choice, and was being discriminated against because she was an identical twin.

Opinions were divided on whether testing should be performed or not and whether Twin A could legitimately be denied the test, and several counsellors were ambivalent.

However, while the twins had said that they were identical, and understood from their mother that they were identical, according to Twin A no DNA testing had ever been performed to confirm zygosity.

Since Twin A refused zygosity testing, the counsellor could say that her HD result might not strictly apply to her sister, and that if her sister ever wanted to know her own status, she would have to go through the predictive testing process herself. The outcome of this session was that the patient had her blood sample sent for analysis.

Ethical, social and legal issues in Huntington disease: the nurse's role.

The result showed that she did not have the expansion mutation that causes HD. Subsequently she informed us that Twin B had learned of the result from a family member, but was still refusing to be tested.

Predictive testing in children A couple presented at the genetic counselling clinic to discuss the HD test results on the two children placed in their foster care.

A private laboratory was consulted possibly because academic laboratories had a policy of refusing to test children unless there were clinical symptomsperformed the tests and gave the results, which showed that one child had the expansion allele and the other did not.Went L.

Ethical issues policy statement on H untington’ s disease molecular genetics predictive test. International Huntingto n Association.

World Federation o f Neurology. In this lesson, the ethical debates which rage over Huntington's disease, including predictive testing, reproductive rights, and third party disclosure, are explored. Lilani, A.

Ethical issues and policy analysis for genetic testing: Huntington’s disease as a paradigm for diseases with a late onset. Hum Reprod Genet Ethics ; 28 – . Seen in a broader perspective, the experience of presymptomatic testing for Huntington's Disease has given medical geneticists the opportunity to clarify their ethical position in the as yet little explored field of predictive medicine.

In summary, Huntington's disease (HD) is a genetic disorder, commonly with onset in middle age, resulting in the progressive loss of muscular and cognitive functions.

Ethical Issues in Huntington Disease Presymptomatic Testing

Huntington's disease (HD), also known as Huntington's chorea, is an inherited disorder that results in death of brain cells. Huntington's disease, particularly the application of the genetic test for the disease, has raised several ethical issues.

The issues for genetic testing include defining how mature an individual should be before.

(PDF) Ethical issues and Huntington's disease