7/9/2020 Medicine, genetics and the law - In genetic disease, who has the right to know—or not know—what?

—what? | Science & technology | The Ec…

Menu

Science & technology Sep 26th 2019 edition

Medicine, genetics and the law

In genetic disease, who has the right to know—

or not know—what?
Cases in Britain and Germany are at odds with each other

Sep 26th 2019

I n this information-saturated age, what happens when the right to know

comes up against the right not to know? The ease of genetic testing has
brought this question to the fore. Genes, some of which contain disease-causing
mutations, are shared within families, meaning the results of a test for a genetic
condition inevitably a ect more people than the one who consented to be
tested. Two contrasting legal cases pitting these rights against each other—one
in Britain the other in Germany stand to extend the idea of who exactly is a 1/8
https://www.economist.com/science-and-technology/2019/09/26/in-genetic-disease-who-has-the-right-to-know-or-not-know-what?frsc=dg%7Ce
7/9/2020 Medicine, genetics and the law - In genetic disease, who has the right to know—or not know—what? | Science & technology | The Ec…
in Britain, the other in Germany—stand to extend the idea of who, exactly, is a
patient and to alter the way in which medicine is practised.

Both cases involve Huntington’s disease (hd), a heritable neurodegenerative

disorder. A single mutation gives rise to hd, meaning that every child of an
a ected parent has a 50% chance of inheriting it. Symptoms, which include loss
of co-ordination, mood changes and cognitive decline, tend to develop between
the ages of 30 and 50, and the disease is ultimately fatal. Diagnosis is based on a
simple blood test, and though there are treatments for the symptoms, there is as
yet no cure.

ADVERTISEMENT

In the British case, scheduled for trial at the High Court in London in November,
a woman known as abc—to protect the identity of her daughter, who is a minor
—is suing a London hospital, St George’s Healthcare nhs Trust, for not sharing
her own father’s diagnosis of hd with her. abc was pregnant at the time of his
diagnosis, in 2009, and she argues that had she been aware of it, she would have
terminated the pregnancy. As it was, she found out only after giving birth to her
daughter. She later tested positive for the Huntington’s-causing mutation,
meaning that her child has a 50% chance of having it too.

Initially the case was struck out, on the grounds that letting it go to trial would
risk undermining doctor-patient con dentiality. But in 2017 that decision was
overturned. The appeal court concluded that situations could arise where a
doctor had a duty of disclosure to a patient’s relatives, and that preventing the
trial on the grounds that it posed a threat to the doctor-patient relationship was
therefore not necessarily in the public interest.
https://www.economist.com/science-and-technology/2019/09/26/in-genetic-disease-who-has-the-right-to-know-or-not-know-what?frsc=dg%7Ce 2/8
7/9/2020
y p
Medicine, genetics and the law - In genetic disease, who has the right to know—or not know—what? | Science & technology | The Ec…

In Britain doctors have a duty under common law to protect a patient’s

con dentiality, and are released from that duty only with the patient’s consent.
However, professional organisations such as the General Medical Council

recognise that breaching patient con dentiality may sometimes be necessary, in

circumstances where not doing so would probably result in death or serious
harm. Identifying such situations is left to doctors’ judgment.

The German case is in some ways the mirror image of the British one. Unlike in
Britain, in Germany the right not to know genetic information is protected in
law. Nevertheless, in 2011 a doctor informed a woman living in Koblenz that her
divorced husband—the doctor’s patient—had tested positive for hd. This meant
that their two children were at risk of the disease.

She sued the doctor, who had acted with his patient’s consent. Both children
being minors at the time, they could not legally be tested for the disease, which,
as the woman’s lawyers pointed out, is currently incurable. They argued that she
was therefore helpless to act on the information, and as a result su ered a
reactive depression that prevented her from working. A district court initially
rejected the woman’s case, but that decision was later overturned. In 2014 the
German Federal Court of Justice handed down a nal judgment, once again
rejecting her case.

Both cases, then, test a legal grey area and their outcomes will be examined with
interest by lawyers in other jurisdictions. If the right to know is legally
recognised in Britain later this year, that may remove some uncertainties, but it
will also create new ones. To what lengths should doctors go to track down and
inform family members, for example? Will trust break down between patients
and doctors if con dentiality is no longer watertight?

It is the law’s job to balance these rights for the modern age. Some worry this is
an impossible task, but it has to try. When the law falls behind technology,
somebody often pays the price, and currently that somebody is doctors. As these
two cases demonstrate, they nd themselves in an impossible predicament—
damned if they do, damned if they don’t.7

Recommended
INTERNATIONAL

Anti-lockdown protests have been hijacked by conspiracy theorists

https://www.economist.com/science-and-technology/2019/09/26/in-genetic-disease-who-has-the-right-to-know-or-not-know-what?frsc=dg%7Ce 3/8