Ethical Management of late-onset disease: Islamic perspectives

Alya Al Shakaki

Weill Cornell Medicine - Qatar

aaa2017@qatar-med.cornell.edu

Ethical perspectives on genomics and genomic testing open up a new field of enquiry in bioethics, as new ethical dilemmas associated with genomics and related fields “seem to be born every day” (Collins, 2006, p. 270). At this moment, some ethical issues are not well addressed and need further investigations and studies with the understanding that ethical deliberations and legislation do not always keep abreast of the latest technological advancements and their legal ramifications. One of the ethical challenges is the management of late onset disease like Huntington’s disease.

Nancy Wexler, a Professor of Neuropsychology at Columbia University and the President of the Hereditary Disease Foundation, is a good example to highlight the ethical and social impact of late-onset disease on a family. Wexler devoted her professional life to the search for the gene responsible for Huntington’s disease which killed her mother and for which she and her sister are at risk. As defined in the Encyclopedia of the Human Genome, Huntington’s disease (HD) is a chronic neurodegenerative disorder that is characterized by a combination of motor, cognitive and psychiatric syndromes and it is transmitted from one generation to others through autosomal dominant trait, so that the children of an affected individual have in their turn a 50% risk of inheriting the disease.

From the moral and ethical stand point, is it preferable for Nancy to conduct the genomic testing, the so-called ‘predictive test’, in spite of the bad consequences and reputation of the disease? Or it is better not to know in order to avoid psychological and emotional distress? How should we deal with vulnerable groups like children; could the parents conduct a predictive test on their children by claiming that they have the legal and moral right to do so as guardians who know their children’s best interest? Will it be an act of privacy violation if the patient’s family members, who are likely sharing the same mutated genes, are informed without the patient’s consent? How can we balance between confidentiality and disclosure of the results? What is the position of Islam of this type of testing?

The main question raised here is “To test or not to test?” And if the person is tested, the second inevitable question will be “To tell or not to tell?” Some bioethicists hold that the disclosure of predictive tests should be in line with the theory of utilitarianism. In other words, if the disclosure will improve a person’s life, then it is better to reveal it and vice-versa (Savulescu, 2003). On the other hand, the genre of fiqh al-muwazanat in Islam can also apply here, especially when the benefits and harms are mixed.Assessing benefit versus harm should always be an ongoing analysis in the subconscious of the Muslim believer.

REFERENCES

Collins, F. (2006). The language of God. New York: Free Press.

Craufurd, D. (2003). Huntington disease: Predictive genetic testing. In D.N. Cooper (Ed.), Encyclopedia of the human genome. Hoboken, NJ: Wiley. Retrieved from http://0-search.credoreference.com.library.qnl.qa/content/entry/wileyhg/huntington_disease_predictive_genetic_testing/0?institutionld=1705