When you have a serious hereditary disease, who has a right to know?

Genetic diagnosis is getting ever more sophisticated. But as doctors uncover diseases that are hereditary, who needs to know? Shaun Raviv explores the rights – and duties – of doctors, patients and families.

In 2007, a middle-aged British man shot and killed his wife. He was declared mentally incapacitated, convicted of manslaughter and sentenced to hospital care. Two years later, he was diagnosed with Huntington’s disease – an inherited condition that damages nerve cells in the brain, causing both mental and physical deterioration until finally proving fatal – which may have contributed to his diminished mental state at the time of the shooting.

The man made it clear to his doctors and social workers that he did not want his daughters to know about his Huntington’s diagnosis. He said he did not want to distress them further after the trauma he had caused by killing their mother. But around the time of the diagnosis, one of his daughters became pregnant.

Huntington’s is a hereditary disease that is autosomal dominant – if one of your biological parents has the faulty gene, then you have a 50 per cent chance of carrying it as well. And if you have the gene, then you will almost certainly get Huntington’s. A diagnosis can have devastating consequences beyond the initial patient.

Several times doctors discussed with the man the idea of telling his children, who were attending family therapy at an NHS-run facility with members of their father’s medical team. But the man insisted his daughters be kept in the dark. “Especially the pregnant one until she gives birth,” he told a social worker. He said he was afraid they might get upset, kill themselves or have an abortion.

Reference:

The High Court judgment that threw out the ABC case, and the Court of Appeal judgment that overturned it.
The opinion of the Supreme Court of Florida on the Pates’s case, which allowed them to take Threlkel to court.
The opinion of the Superior Court of New Jersey on Donna and Robert Safer’s case, which allowed them to take the Pack estate to court.
A factsheet on medullary thyroid cancer from the American Association of Endocrine Surgeons.
Roy Gilbar and Charles Foster’s article on the ABC case.
A factsheet on familial adenomatous polyposis from the US National Library of Medicine.
The joint report on consent and confidentiality in clinical genetic practice authored by the Royal College of Physicians, Royal College of Pathologists and British Society for Genetic Medicine. [PDF]
A 2016 study that surveyed people’s opinions on sharing genetic information.
The right to decide whether or not to be informed about the results of research is enshrined in Article 10 of the International Declaration on Human Genetic Data and Article 16 of this additional protocol to the Council of Europe’s Oviedo Convention.
If you’d like to dive deeper into this topic, check out our briefing on doctor–patient confidentiality, hereditary disease, ethics and law.

Category:	Society

Attribution

The source of flipbook:
Shaun Raviv. (2018, July 10). When you have a serious hereditary disease, who has a right to know? Mosaic Science. https://mosaicscience.com/story/right-to-know-doctor-patient-confidentiality-law-ethics-genetic-testing/
This article first appeared on Mosaic and is republished here under a Creative Commons licence.

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When you have a serious hereditary disease, who has a right to know?

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Genetic diagnosis is getting ever more sophisticated. But as doctors uncover diseases that are hereditary, who needs to know? Shaun Raviv explores the rights – and duties – of doctors, patients and families.

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