The ethics of genes, and all that data too

Summary

Some thoughts from a couple of talks I’ve been at over the past few days. The first on genomics, and the second on using data in local government.

Regular readers of this blog will know that Puffles and I like to get out and about in the community. In jest I often say that we’ll turn up to the opening of an envelope or a front door, so long as it looks reasonably interesting.

How do you find out when and where these talks and events are on?

Ever since Will Perrin introduced me to On The Wight back in 2011, my view has been that every town needs an equivalent of such a portal. Click on the link and have a look at it. Clear, user-friendly, interactive and allows people and community groups to post their own events. It’s also the go-to place for the Isle of Wight. The problem other places face is that there are several competing versions that are not all-encompassing. Bringing them all together is not nearly straight forward either – whether getting the individuals behind them into the same room to delivering something that does the job.

In Cambridge, there are a number of different listings – too numerous to mention all of them here. Furthermore, the tools that people can use on social media – Facebook, Eventbrite and Meetup return a whole host of community groups and organisations. It’s not just the likes of the councils or Cambridge University Events that self-publish their own on their corporate websites. Trying to keep track on all of them becomes quite exhausting.

Cambridge Humanists hold a talk – on Genome Ethics

Some of you may be aware that I often go along to talks hosted by Cambridge Skeptics. It was where I met comedian, commentator and campaigner Kate Smurthwaite – see here. Having discovered that Cambridge Humanists have a Meetup.com group, I assumed that cross-posting the two would work wonders in bringing similar audiences together. Unfortunately it didn’t work out like that as when I turned up, I didn’t seem to know anyone, panicked (anxiety disorder kicking in), hid behind sunglasses for much of the talk and, after the Q&A session made a quick exit…followed by a tranquilliser pill when I got back. I get agitated like this once every few months. It’s not fun. Anyway, more on audience dynamics later.

Dr Anna Middleton asks about principles and details

You know when you stumble across a speaker who, for whatever reason comes across as likeable? Dr Middleton’s like that. Over the past few years I’ve been quite lucky with speakers. Catherine Howe is another – a passionate expert on public sector social media. Stella Creasy and Melissa Terras are two more. What these four all have in bundles is:

  • Knowledge and expertise in their given fields
  • The ability to communicate clearly to different audiences
  • Passion about their subject areas
  • The desire to further their knowledge

Now, at least half of the examples I cited have PhDs. One of the things I want to see in the media is a greater variety of people with expertise being invited on – rather than think-tank sock puppets. Hence liking what The Women’s Room are doing to change this. (Know an expert? Get them listed here!)

The big question Dr Middleton asked was this:

“Should patients be told about the risk of future illnesses they might develop as a result of analysing their genome?” (i.e. all of the genes in their body).

Actually – there’s a significant amount of context to all of this. The context is here - and was also very clearly set out in her talk.

What became clear from her talk is that there is a society-wide conversation that needs to happen on treatments involving our genes – whether the analysis of, or interventions to. The problem is that society isn’t educated enough (and I don’t mean that pejoratively) to make that judgement call. I certainly don’t. It’s like with the police and crime commissioners election. Few people voted because (amongst other things) the electorate had not been taken through the process of becoming informed voters on what is a very specific role.

The other thing to note about Dr Middleton’s talk is the speed at which technological advances are bringing down the costs of analysing the genome of a single human being. She cited that a few years ago it was £1million. Today it’s about £1,000. In the not-so-distant future, £1? In no uncertain terms, she said the technology will transform healthcare delivery. Hence why it’s important to have the discussion about ethics far beyond a specialist audience.

Talk 2 – are you young and in local government?

I took Puffles along to this one because there was a lot about ‘big data’ that I didn’t quite get, along with wanting to see what ideas I could glean from people there to take back to Cambridge. YoungAndInGov is a forum for people under…40…?…in and around local government. I think this was their first gathering, picking a very futuristic topic to unpick. I say futuristic because at present we are nowhere near achieving the full potential of all things big data. (Or as those Puffles hangs around with: ‘data’).

The workshop speakers are listed here - it’s worth looking through what they are doing. I followed Jacqui Taylor for what turned out to be a very powerful workshop. She unpicked a whole host of issues relating to large organisations and data that they use. In particular, she spoke at length of the problems that arise when organisations merge – in particular banks. Think of the size of the IT systems, think of the complexity of their systems, think of the regulatory requirements…and then try and get multiple different systems to work together – while unpicking very expensive IT contracts with big IT firms.

Her talk finished with this digital video, which I found compelling:

Given that we will be talking about open data’s sister, open policy at September’s Teacamp in London (do join us – see here), Jacqui’s talk was quite timely.

Audience dynamics

I’m always interested to see who comes to which events, as well as who speaks at them. If I were to compare the audiences at the two events, age-wise they were at opposite ends of the spectrum. Most of the audience at the first talk were over 50. At the second talk, there was a good showing from local government and consultancies, but central government and community activists were conspicuous by their absence…perhaps with the exception of Puffles.

What’s important though, is that both events were put on in the first place. Organising and hosting events – especially if they are regular ones, is both time-consuming and very draining. I’ve been co-hosting the Cambridge offshoot of Tecamp, Teacambs for the best part of 18 months. Sorting out venues, speakers, timings, publicising etc isn’t easy – especially when you do it in your own time & even expense. In getting things started, sometimes you have to just do it & see what happens. Only then can you make decisions on how to improve things.

In the case of the second talk, there are a number of civil service and voluntary sector networks they can tap into in order to get a greater breadth of coverage. Back home in Cambridge, what I saw with the Humanists actually mirrored what I have seen in a number of other community groups and gatherings. The organisational brains behind the ‘offline’ events tend to be older members of the community. Quite often there will be a sister ‘student’ society within the universities and further education colleges in Cambridge, but weak links between them. Thus we have a vibrant student movement, a gap when people get to their late 20s to early 40s, then things picking up within the longer term community.

My personal challenge for the next academic year?

Simple: Make those connections.

But it’s not easy by any means. Back in 2011 I had this idea that social media could be this big driver in Cambridge. But the past two years of being reasonably active (while recovering from a mental health crisis a third of the way through – which sort of put me back a bit) made me aware not just of existing barriers, but about what makes people ‘tick’. In particular, you can’t just set up a social media site and expect people to take part. You can’t do broadcast-style advertising and expect people to turn up. You can’t just stick to where you are most comfortable and expect people to come to you. We’ve got to go where they are, ask, listen and respond accordingly.

 

 

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This entry was posted in Cambridge, Charities and Big Society, Data, science and statistics, Events I have been to, Public administration & policy, Puffles, Social media. Bookmark the permalink.

2 Responses to The ethics of genes, and all that data too

  1. Pingback: The ethics of genes, and all that data too – A dragon’s best friend | Public Sector Blogs

  2. lmluheshi says:

    Puffles might be interested in this radio 4 programme from earlier this week on the ethics of genetic testing in children… powerful and extremely tricky stuff.
    http://www.bbc.co.uk/programmes/b038hhs7

    I would also mention to Puffles and his followers (and forgive the plug… I work there) that there is a genomics and health policy think tank (www.PHGfoundation.org) just down the road from him, and that they are currently working on a number of projects (some of which Anna Middleton has contributed her great expertise to) tackling the ethical, social, legal and scientific challenges of using genomics in health care.

    If you’re interested to know more, follow @phgfoundation and @phillippabrice our wonderful head of knowledge and comms:)

    OK.. plug over. Hope to see Puffles at another talk soon.

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