A need to consider Ethics,

Something we’ve been grappling with this past month are some of the ethical implications surrounding the Living Lab. Though this isn’t an exhaustive exploration of all of the ethical considerations to undertake, it captures some of the difficulties encountered and some of the processes we need to undertake.

As a clinician, I’ve had the four pillars of medical ethics drilled into me since the age of 18 and am thus rather familiar with the principles: Autonomy, Beneficence, Non-Maleficence and Justice. These have been drawn directly from the Hippocratic Oath, around 400 BC and thing's haven't changed drastically since then. For the English speakers amongst us, I’ll translate:

  1. Autonomy: Respect for the patient’s right to self-determination

  2. Beneficence: The duty to ‘do good’

  3. Non-Maleficence: The duty to ‘not do bad’

  4. Justice: To treat all people equally and equitably

These principles are upheld by processes and enshrined by laws such as the consenting process, the right to confidentiality and negligence laws to name a few.

When it comes to medical research, there are even more elaborate principles to guide us. In the United Kingdom, this is largely under the remit of the Medical Research Council but various regulatory bodies also issue guidance to their members. For example, the General Medical Council have a robust policy for doctors conducting medical research, here are just the broad principles;

  1. Comply with the Law and Governance

  2. Good research design and practice

  3. Honesty and Integrity

  4. Avoiding conflicts of interest

  5. Consenting to research

  6. Respecting confidentiality

As is often the case in these matters, it can sound quite vague however the devil lies in the detail and the detail is highly dependent on the context. The guidance issued above is very much aimed for science at the ‘harder’ end of the spectrum but social sciences are also governed by similar principles.

When dealing with a Living Lab I suppose you can see immediately where difficulties might be encountered. Where the barriers between the end-user and industry are broken down just how scrupulously aware one must be to any conflicts of interest. Where one doesn’t necessarily have a hypothesis going into the ‘experiment,’ how does one outline the research ‘protocol.’ Where the environment can’t ever be ‘controlled’ as it is real life, how does one conduct a ‘risk assessment?’

What’s more as we’re dealing with Digital Technology, in much the same way Facebook or Apple have managed to exploit the fact that regulation hasn’t caught up with technology, the world of research and innovation can suffer from this. Most of us don’t think twice about allowing Google or Amazon permission to use our data to make life easy for ourselves, whereas the prospect of research using data from something as simple as a step-counter is subject to enormous oversight, in some cases I agree this is necessary, but this highlights just how out of touch regulation can be compared to the world around it.

In our Living Lab, we are working with older people, we have to pay particular attention to the fact that some may be considered vulnerable. This is an important consideration for us during the recruitment and consenting phase and there may be further implications down the line. Who knows what the unintended consequences of participating in a Living Lab might be for some individuals, positive or negative and how might it affect them when the project comes to an end? These consequences may be unintended but they should not be unanticipated! Hence the process needs to start now.

I suspect the way to approach the situation will be to hold those principles above at the very forefront of what we do, where law and governance appear unclear seek advice from our in-house advisory panel and above all remain open and transparent in all our dealings particularly with our citizens or service users.

It seems as though I’ve asked plenty of questions and provided few answers, sadly there’s not a whole amount of guidance out there around the ethical considerations for managing Living Labs. Perhaps that can be an output of ours one of these days…

In writing this post I found the following resources helpful:

Emerging Ethical Issues in Living Labs

Fausto J Sainz (2012)

Ethical Issues raised by the new orientations in ergonomics and living labs

Javier Barcenillia and Charles Tijus (2012)

New technology in health and social services – ethics and ergonomics in videotelephone use amongst workers and clients

Veikko Ikonen et al (2000)

Medicines Research Council

General Medical Council

Economic and Social Research Council

Ethics Guidebook