Informed consent from vulnerable populations

I came across this article on Ebola, the high fatality rate disease that has outbreak in West Africa in recent months. The use of an experimental serum ZMapp has raised certain critiques for ethical reasons. I found very clear and appealing the way the writer explains the problems when it comes to ethical testing and deployment of a new treatment.

The trick to informed consent is that it has to be meaningful. It’s not enough to just tell subjects about the study; they need to understand what that means, and to be capable of saying or signing a document saying, “Yes, I understand, and I’m still willing to participate.” This leads us to a second major concern for ethical research: the treatment of vulnerable populations. There are some groups of people who by definition are unable to give meaningful informed consent. These include children, institutionalized persons (prisoners and those confined to mental health institutions), and anyone else who might not be capable of understanding the full implications of their decision to participate in a study.

First, the author emphasizes not only the importance of obtaining informed consent from subjects, but also the fact that such consent must be meaningful. Secondly, the treatment of vulnerable populations, i.e. those who are not entirely able to give meaningful informed consent. Although this article mainly refers to sanitary research, these circumstances are also possible within social science. These include children, disabled population or demented elderly population.

Another interesting piece of this article is the reference to informed consent when doing research in developing countries:

Most social scientists who do research in developing countries – myself included – have similar stories of subjects not understanding why they are being asked to sign an informed consent form; in their minds, agreement to talk to me is consent. Signing a document also leaves a record, which many subjects fear might somehow be used against them by political authorities, foreign spies, or others who are up to no good.

Finally, the way in which the Ebola dilemma seems to be solve by the World Health Organization:

The World Health Organization announced today that they are forming a panel of ethicists to consider whether and how ZMapp might be distributed among Ebola patients. There is no doubt in anyone’s mind that the urgency of Ebola, its high fatality rate, and the need to deliver effective treatment as quickly as possible must be taken seriously. Here’s hoping that the WHO ethicists can come to a quick conclusion, that ZMapp can be manufactured quickly, and that the drug will be responsibly distributed in a way that informs patients and their families to the fullest extent possible and allows researchers to learn more about how it works and doesn’t work in human populations. A cure for Ebola would be a wonderful thing indeed.

This may be seen as a possible solution to address other research ethical issues, i.e. the creation of a panel of ethicists.

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Social Media in Social Research 2014 – 4th annual conference

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The SRA is pleased to announce the 4th annual conference on Social Media in Social Research. This one-day event at the British Library in central London will feature these presentations:

  • Uninformed consent and social media research.  Dan Nunan, Henley Business School. In social media research, is informed consent possible without limiting access to the most valuable data? Do we rely on a set of ethical norms that are outdated in the internet era, and are there alternative and more effective approaches to consent?
  • Using social network analysis for social media in social research.  Dhiraj Murthy, Goldsmiths, University of London. This presentation will explore the use of mixed-method Social Network Analysis (SNA) to interpret social media in social research contexts. Methods of visualization will be discussed using Twitter and other social media data.
  • The Collaborative Online Social Media ObServatory: a progress report.  Rob Procter, University of Warwick. Rob will outline the main features of the Collaborative Online Social Media ObServatory (COSMOS) and demonstrate their application through examples of current research by the COSMOS team. He will also give a brief overview of development plans.
  • The ESRC’s social media agenda.  Samantha McGregor, ESRC. This presentation will outline the ESRC’s current thinking and future plans for social media data and research. This will also be an interactive session, with delegates encouraged to ask questions and discuss future priorities.
  • A social media case study – Facebook and Scottish independence.  Preriit Souda and Alastair Graham, TNS BMRB. An analysis and graphical representation of the thousands of conversations and influencers of the two campaigns in the Scottish Independence debate, together with results of opinion polling on voting intentions and attitudes, relating these to the Facebook analysis.
  • The social media challenge within the Food Standards Agency.Dr Joanna Disson and James Baker, FSA. The FSA’s communications and social science teams  are working together on the opportunities presented by social media. Where does communication end and research begin? When does ‘insight’ become ‘data’ and are the right skills in place to enter this new territory?
  • Analysing digital activism: The use of multi-layered digital ethnography in the social sciences.  Suay Ozkula, University of Kent. A case study of digital activism based on research with Amnesty International, using online and offline ethnographic observation, and short-term and long-term social media monitoring, as well as interviews with Amnesty staff and online participants.

Panel discussion: The future of social media research

Date: May 1, 2014

Start Time: 10:30 am

End Time: 4:30 pm

Price: £105.00

Further details: http://the-sra.org.uk/event-registration/?ee=151