August 2015

Simon Davies wrote an interesting blog post on “Why I’ve stopped caring about what the public thinks about privacy” in which he explains the trap of advocates for any social benefit caring too much about whether there is majority support for their position. I agree with him that privacy advocates who understand the importance of privacy rights and privacy practices should not despair when faced with survey after survey after experiment in which many people, often a majority, either state they don’t care very much about their privacy or demonstrate through action that even if they care about privacy, they ware willing to give it up for a small perceived benefit. However, I think Simon’s article needs further consideration. Of course those of us who see the importance of privacy should not give up our advocacy. However, we should understand where the apathy or even hostility to privacy rights comes from. We need solid empirical research on this and good conceptual presentations of why it happens. Only then can we try to apply force to the right levers to improve everyone’s access to privacy.

My own work on the psychological impact of social network site affordances shows some of the reasons why people’s responses to surveys show that they have limited their desire for privacy. It’s not that they don’t care, it’s that in order to maintain their sanity in the face of peer pressure and network effects pushing them into using things like Facebook, including using their “legal name” and having most things open on there, is to downgrade their privacy perceptions. If we can push back against the privacy invasive nature of these systems, giving people technological, legal and economic possibilities to connect without exposure, then I am sure that their reported perceptions of privacy will swing back.

The ethics of big data is generating a lot of discussion these days. I read an interesting article today which showed that some managers in the health sector find the voracious attitude that “everything must go into the pot” “creepy”, while analytics professionals go on about the benefits of more (good quality) data giving more useful information. This article, though, was quite typical in the area in that it focussed on the US situation, with the problem that health-care providers in the US are driven by their revenue systems: the source of the data for big data health analytics in the US in the article is cited as the “Revenue Cycle Management (RCM) systems” which capture data mostly so that the healthcare provider can charge the right (i.e. the legally/contractually allowed) price to the funder. Of course it’s pretty much only the US that has this crazy system. Elsewhere there are fewer payers for healthcare for the majority of people, sometimes down to (almost) one in places like the UK. The US situation also raises large questions because of the crazy way its healthcare is funded in that patients are severely lacking in trust that the use of their data will not lead to significant individual problems, up to and including being sacked for being potentially too expensive to provide health insurance for.

Of course this does not mean that in other countries there are no big ethical issues with big data for health analytics. The proposals by the UK government to limit or ignore patients’ ability to opt out of the program, through which private companies such as pharmaceutical companies would gain potentially significant private benefits alongside possible public health benefits, but with no guarantees of privacy or security of the data, raises similar questions to the century-plus debate about census data (before WWII ethnicity data in the US census was supposed to be inaccessible to the government at large – that guarantee was wiped away after Pearl Harbour, leading to the disenfranchisement, loss of property and internment of over 100,000 American citizens of Japanese descent).

Europe, with its more heterogenous health funding systems must explore the issues around all the models and not be driven by US-centric concerns.

There are many science fiction stories published each year with wild speculation, and usually few details. It’s not unusual, therefore, just by the law of averages, for sometimes the SF to be followed by the  a discovery of (somewhat) matching science. An interesting piece on anti-agathic (delaying or removing the effects of ageing) work I saw today reminded me of a piece in a Heinlein novel. In “Methuselah’s Children” where a secret bunch of families with naturally bred longevity flee the Earth in an early spaceship because of the threat of a pogrom and/or being the subject of vivisection to discover the secret of their longevity. Returning to Earth after some interstellar adventures and with time dilation having kept them even younger than ever, they find that their existence spurred Earth to invest in anti-agathic research and discover a “blood cleaning” process which seriously reduces ageing. Not a novel idea, actually, as this Guardian article points out, the idea was proposed by Libavius in 1615. It’s looking like it might have potential, though. The work of Wyss-Coray on the effects of young mouse blood on old mouse brains (and vice versa) shows that transfusion of young blood into an old mouse causes a revival of neuron birth, while old blood in young mice retards such development.

There’s a horror story in here about, say, the Chinese communist party using both sides of this – harvesting young blood to keep their gerontcratic leaders healthy, while deliberately transfusing older blood into younger dissidents to dumb them down.

As that very good Guardian article mentions (it’s an in-depth and very well-written science piece, a rarity in modern journalism) though, it’s not just the idea of transfusions – we can hardly keep up with other demands for blood for transfusions in most societies. The idea that we could track the protein components of blood plasma as we age and filter out the ones which contribute to ageing and synthesise and add back the ones which promote health and youth, are interesting. Of course there’s also the idea that’s been used by a number of SF authors where by tinkering with ageing and encouraging bodily regeneration, we “use up” our body’s ability to regenerate and instead of gaining (near)immortality we die quicker (sometimes very quickly) though with amazing powers of regeneration in the (usually short) time. Again, this is perhaps a worry with these real science ideas.