The first confirmed case of ebola has been found in the US, in Texas – unsurprisingly someone who had recently been to Africa. This has prompted an outbreak… of unethical media reporting about the case, with several breaches of privacy which seem unlikely to be in the public interest. Specifically the media has disclosed the victim’s full name, then to add insult to injury they published both his address and then a map of where he lives.
The media frenzy around this case is as unwarranted as it is unsurprising – scarily reminiscient of the painfully telling Onion piece – which claimed just 50 more white people needed to die of Ebola before a vaccine would be developed…
But even if we accept that the public is interested in the case (which no doubt they are) and that this interest warrants reporting on it does that give the media the right to release this person’s personal details and movements?
The main argument that can be offered for breaching typical standards of confidentiality is that the breach is in the public’s interest – this is the defense typically usually used in whistle blowing cases and in cases where medical professionals break confidentiality to prevent harm to others.
So isn’t this justification enough? Aren’t all Americans now at risk of ebola, amd hence have a right to know about who has it and where it is so they can choose to minimise their own risk?
It is worth noting that whilst Ebola is to be frank a terrifying disease it is relatively easily containable by the use of routine public health measures such as surveilance, isolation, contact tracing and modern hygiene standards and practices as it is spread through fairly obvious contact with bodily fluids, rather than airborne. And these fluids are only generated once someone is obviously symptomatic. As such there is little chance of a significant outbreak in countries like America or Australia because the number of contacts likely to be exposed to bodily fluids are usually minimal.
So this information is unlikely to help anyone protect themselves from being exposed to ebola – those who were already exposed (if any) have been exposed and are being contacted, and no one will now be exposed to this particular victim, so having their details in the public domain does no good, and has a potential to do harm in three ways:
1. It can reinforce false beliefs – “why would they tell us this if we weren’t at a significantly increased risk?”
2. It creates the potential for witch hunting – where the victim is blamed and potentially harmed – “civic-minded” citizens might take it upon themselves to “minimise” the risk of infection by burning down the apartment building he lives in for example.
3. It may perversely discourage other exposed travellers from seeking medical treatment and attention – it is worth noting that the victim took himself to hospital to seek treatment. If there is considerable public outcry, stigmatisation, distaste and displeasure the next victim may feel their details will be exposed in a similar fashion and avoid medical attention with predictably disasterous effects both for them, and for those potentially exposed to them.
Could spreading this information be helpful for contact tracing? Contact tracing is a public health practice where all those who might have been exposed are identified and contacted – both to see if they have symptoms and in some cases to isolate them until they are cleared. Reporting these details might enable a few people who haven’t been identified as being in contact to self identify, but practices of contact tracing are well established and this is a relatively easy case since his movements are well known and the victim has been able to communicate with public health officials about those he has been in contact with, so it is likely to be of minimal benefit, if anything it might well create more false positives than anything else – with worried people who think they were exposed using up valuable time and resources.
In a deeply misleadingly titled piece: “With Ebola, the public’s right to know trumps patient privacy” Art Caplan an American bioethicist argues that rebuilding and maintaining trust requires the public be given some normally confidential information. He argues there is a public interest in knowing the process of how this case was handled, and his movements so that the public can be reassured about the system and that they were not exposed. It is fair to note that mistakes were made in this case – he then went to hospital and was discharged despite having disclosed that he had recently travelled from Africa. However there is as Art acknowledges a significant difference between releasing this information, and the victims personal private details. It is hard to see how releasing that information really would provide public reassurance? I’d suggest it doesn’t really, instead it feeds fear and distrust which are the greatest killers in epidemics.
Highly dangerous infectious diseases create unique ethical challenges because by their very nature those who suffer them are as Battin et al put it “both victims and vectors of disease“. But whether someone is a victim or a vector of a disease, we ought to remember that they are still a person and as such deserve to have their private information protected, especially if disclosure is unlikely to benefit and may well harm the public’s interests, no matter how interested they are in knowing it.