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Genetic screening: the right to know

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Where do rights come in? Where does the question of rights come into genetic screening?

In 1997 the Universal Declaration on the Human Genome and Human Rights was adopted by the United Nations Educational Scientific and Cultural Organisation (UNESCO). The declaration asserts the concept of our common genetic heritage, but there are aspects of our common genetic heritage that we could do without: Huntington's disease and cystic fibrosis, for example.

This realisation resulted in pre-implantation genetic diagnosis, pre-natal genetic screening and newborn screening. And now with predictive genetic screening it can be determined whether one might succumb in the future to a particular disease; possibly a disease for which there is neither treatment nor cure.

This raises the question of the right not to know. Article 10.2 of the European Convention states: 'Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed.' When Berkman and Hull considered 'The 'Right Not to Know' in the Genomic Era: Time to Break from Tradition? in the American Journal of Bioethics (2014, 14: 28-31), they cited reports showing that up to 80% of adults with a family history of Huntington's disease declined genetic testing. It seems reasonable for someone to refuse genetic testing, which risks the possibility of encumbering themselves with the psychological burden of knowing their future health prospects are bleak.

On the other hand, is it rational to assert what amounts to a right to ignorance? After all, the fight against medical paternalism is based on challenging the notion that 'doctor knows best at all times', and that the withholding of medically relevant information from a patient is wrong.

Further, when children are screened for adult-onset conditions, if a genetic abnormality is detected which will result in a fatal condition, do parents have the right to learn the truth about a life-threatening risk to their child, or is this 'parental right' trumped by a child's right not to know? And where does the enforcement of such rights stand legally?

George Winter, medical writer

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