Genetic privacy v duty to disclose: who wins?

AS WE delve ever further into the human genome, ethical and legal frameworks are struggling to keep up.

Given the potential of genetic information to affect people’s employment prospects, or ability to get insurance, there’s been an understandable focus on protecting genetic privacy.

But what of situations where a patient refuses to share information that might give relatives the opportunity to identify their own genetic risk and seek early prevention or treatment?

Over the past decade, various Australian laws and guidelines have sought to address this issue, allowing doctors to disclose genetic information to relatives without the patient’s consent when that is required to prevent or lessen a serious threat to life, health or safety.

Being permitted to do something is not the same as being required to do it … or is it?

A recent decision in the UK suggests that, once clinicians are given the right to exercise their clinical judgment in cases such as this, courts may well determine that they have an obligation to do so.

The case in question is a tragic one by any standards. In 2007, a British man shot and killed his wife and, after being convicted of manslaughter due to diminished responsibility, was detained under a hospital order.

Medical staff suspected he might have the genetic neurological disorder Huntington’s disease, a diagnosis confirmed in 2009.

The man did not want his daughters informed, despite their 50% risk of also developing the fatal condition.

His refusal became more resolute after one daughter, known as ABC in court documents, became pregnant. Her father feared the information might lead her to terminate the pregnancy.

Five months after ABC gave birth to her own daughter, she was accidentally informed by a clinician about her father’s diagnosis. Genetic testing confirmed she also had the disease.

ABC sued the UK National Health Service on the basis that she would indeed have terminated her pregnancy had she known the facts at the time.

Although the claim was initially struck out as having no basis in law, earlier this year an appeal court overturned that decision, giving ABC the right to pursue her claim.

The appeal court recognised it was “creating a new, previously unknown, duty” for clinicians, according to one legal analysis of the case.

Happily, such cases are rare, since few people will refuse to disclose this kind of information to their families.

But, even before the UK decision, Brisbane medical negligence lawyer Wendy Nixson had argued that a duty to warn relatives of the risk of serious genetic disease could be found in Australian common law.

Although the question is yet to be tested here, Nixson believes an Australian court “could readily determine a duty of care to genetic relatives”.

In a recent article for the QUT Law Review, she argues that doctors need to inform relatives of potential genetic risks, so they can consider treatment options.

“It would not be sufficient to rely on patients themselves to disseminate genetic information [to their relatives] as a means of discharging a medical practitioner’s duty, since doctors could not be confident that the information was passed on at all, or that it was passed on with appropriate advice,” she writes.

The fact that doctors have a legal right to exercise clinical judgment in such cases, including the right to breach patient confidentiality, leads her to conclude that genetic relatives should be able to seek legal redress if they suffer harm as a result of not being informed about the potential risk.

If clinicians do indeed have a duty to inform relatives of a genetic risk, that raises some major logistical challenges. Would they be required to moonlight as private investigators to track down estranged offspring, or perhaps children resulting from a long-ago sperm donation?

Such issues might be addressed by requiring doctors to report the information to a statutory authority that would be responsible for deciding what to do with it, Nixson suggests.

That sounds like a practical approach, but no authority is ever going to come up with a one-size-fits-all answer to the bigger questions around exactly what degree of genetic risk or seriousness of consequences would warrant a mandatory breach of confidentiality.

Huntington’s disease is about as clear-cut as it gets, but what about a gene that conferred a 20% risk of coronary artery disease? Or a 10% risk of schizophrenia?

We can only speculate on what the courts might have to say about that.

Jane McCredie is a health and science writer based in Sydney.

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