The Only Way is Ethics

The Only Way is Ethics

 

Thank you Facebook for doing what many of us have been trying to do for some time, and that is raising awareness of the important and largely un-held ethical debate regarding the use of personal information and data from the internet in research. The Facebook story bought together three important things:

  • A commercial organisation claiming that their terms and conditions cover them to do anything they wish when researching human subjects.
  • Authors who didn’t make it transparent whether their research had been reviewed at a university ethical committee, what issues emerged and how they were addressed in the study.
  • Journal publishers who seem to take leniency in the ethical nature of their papers rather than upholding high standards of research and review.

The Facebook experiment has surfaced a range of opinions with claims that it was socially irresponsible, and that it was ethically dodgy,

“participation wasn’t voluntary, it was enforced, and as a result people’s state of mind may have been manipulated, in my view, without consent” (The Reed Diaries).

Peter Reed rightly suggests that advertising companies have been manipulating us since the dawn of time, and Stephen Downes agrees that commercial companies deal and trade in consumer data to bring us the products and services we would like. Companies constantly experiment with consumer data and “ethics regulations are routinely ignored”.

All of the opinions this week miss other important points regarding the clearly unethical nature of the research conducted. And also, having worked in consumer understanding within a multinational blue-chip company, the statement that we routinely ignored ethics, as did many of my collaborators, for me, is entirely garbage.

What is research?
First, let us separate out what is ‘research’ from what is merely the handling of data. What we are then distinguishing between is research ethics and the ethical and moral values that constitute a commercial organisations degree of social and corporate responsibility. This definition is from the US National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research:

 “The term ‘research’ designates an activity designed to test an hypothesis, permit conclusions to be drawn, and thereby to develop or contribute to generalizable knowledge (expressed, for example, in theories, principles, and statements of relationships)”.

Researchers have an obligation to ensure:

“Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being”.

How are research ethics governed?
When conducting research it is the responsibility of the investigators and ethics boards of universities or organisations (commercial or otherwise) to evaluate the risks and benefits of their work. This is an important step on many levels, to protect the researcher, to ensure the work is of the best quality, and to also provide the required documentation to ensure the participant is fully aware of the risks, hence ‘informed’.

How should these systems work? Regardless of the field of research, whether it is medical, psychological, biomedical, sociological, the responsibility of the researcher is to identify and comply with relevant ethical protocols, and in reality this usually means complying with internal protocols alongside codes of conduct from often more than one professional bodies and organisations.

When I worked in market research, we complied with the codes of practice from the UK Market Research Society. Those companies we worked with, such as those processing store card data,  also followed research codes of practice. It has amused me the sweeping statements this week about ALL commercial companies being unethical. I would even go so far to say that for commercial companies, there is much more at stake than for an academic institution. Conducting good ethical research would be directly linked to reputation, and if a company is investing half its R&D budget on a product (the rest on packaging and even more on marketing), the research underpinning it needs to be robust. I suggest that with both universities and companies conducting human research, there is a wide range of ethical standards employed, but we cannot tar everyone with the same brush.

How does all this apply to online research?

The Market Research Society defines online research as:

“Collecting information from a social networking service” and “any other collection of personal data in the online environment for the purpose of research”.

And therefore it follows:

“In accordance with the principle of voluntary informed participation, information identifying respondents (personal data) must not be collected from without their consent”, and “researchers conducting social media monitoring, text analytics or sentiment analysis should take steps to avoid collecting personal data. Researcher must ensure that any personal data is not further processed without consent”.

And ethical codes particularly govern working with children and vulnerable individuals:

“In accordance with the principle of voluntary informed participation, information identifying children must not be collected from forums, social networking sites, blogs, etc without their consent and without obtaining the consent of a parent or responsible adult”.

The flaw in the research published this week, and many other studies like it, is that the risks and benefits of the study were not fully weighed up. The methods of ‘informing’ the participants about such risks and the nature of the work was not in place, and there were no means of ensuring each participant was “truly informed?” Many people think that any information on the internet is up for grabs, and the ‘public private’ argument is a bit of a smoke screen. All internet research requires ethical consideration. Fact.

With research on Facebook, Twitter, MOOC platforms and other social networking services, the answer appears far to simple. The Terms and Conditions increasingly seem to out trump the need for any ethical discussion. This is a horrific situation, and if it persists, it gives anyone researching carte blanche to experiment with human subjects, including possibly minors or vulnerable people.

So what were the risks?
So we have established that the study was a deliberate experiment with a hypothesis that had considered the recruitment of individuals into a study. In January 2012, “participants were randomly selected based on their User ID. The experiment manipulated the extent to which people (N = 689,003) were exposed to emotional expressions in their News Feed”. (Kramer et al 2014).

The outcome was they had manipulated people’s emotional thoughts through a social network, not a new finding, but a study done on a large scale none the less. So what might the risks have been to individuals?

The UK Office of National Statistics in their ‘Social Trends 41 for Health’ analysis in 2009/2010 shows that 1 in 10 adults (11%) of England were diagnosed with depression. That is 11% of adults within that year, not the prevalence over a lifetime which is much higher. Over the preceding decade, prescriptions of antidepressants increased by 334% in England. You will find similar figures on the internet elsewhere, so assuming therefore that a fair proportion of study participants might have been depressed, what might the impact on them have been, and what might the impact on non-depressed individuals have been over the research period? Well both negative thoughts, and levels of rumination and dwelling on negative thoughts are measured outcomes in studies of depression; research suggests negativity may or may not contribute to it, and work in this field is generally in its infancy (Pasyugina 2014, Takano 2014).

Within this population there would undoubtedly have been risks. Individuals were not fully informed of the implications and that they were participating in an experiment, with none of the affordances of being free to withdraw at any time. But it doesn’t matter because they gave their consent right?

What do the Facebook terms cover?
The authors claim that signing up to a Facebook account constitutes informed consent for this research. At least they made passing mention of informed consent. In another interesting Facebook clinical study looking at using the service as an enhancement to therapy there was no mention of ethical approval within the publication that had conducted research on vulnerable participants.

So, searching through the “Full Data Use Policy” that they refer to, I couldn’t find any reference to the statement made by the authors in their paper, that creating an account constitutes informed consent. Maybe I just missed it, but this hardly makes for users of Facebook being fully or truly informed that research might be taking place?

In all of the terms I could only find ONE mention of the word ‘research’ and how Facebook uses your information:

“for internal operations, including troubleshooting, data analysis, testing, research and service improvement”.

It also states to what extent they share their data with others, and I’m assuming here that they shared their data with the researchers in order for them to analyse it and write up the study.

“While you are allowing us to use the information we receive about you, you always own all of your information. Your trust is important to us, which is why we don’t share information we receive about you with others unless we have:

received your permission; 

given you notice, such as by telling you about it in this policy; or 

removed your name and any other personally identifying information from it.”

I suspect the 600,000 odd participants were not invited to provide their permission.

Where does this leave us?
Unfortunately we cannot stop social networks and corporations setting their terms and conditions to suit their commercial needs. I’m not sure whether they can legitimately ‘out trump’ the need for any ethical approval governing research it might undertake because these are legal terms, not philosophical arguments. Facebook can simply amend their terms now to cover research, and make their mechanisms of informed consent more explicit, but academics and publishers can still commit to good quality research? Surely, those researchers who published this week had some moral and ethical conscience, or were they gilded by the prospect of funding and reputation-boosting work?

Academic publishers should surely want to uphold the standards of the articles that they produce, and to uphold the rigours of the peer-review process? Some journals do send papers back that haven’t been ethically considered, and these stances are far more rigours in science and medicine than in other subject areas.

What do the public think?
In all this, nobody knows what the public thinks. We know what opinion makers on social networks think, and we know what some researchers like myself might think. A few conversations with my friends reveals that it is just generally accepted that everyone gathers your personal data anyway. What they didn’t understand were the implications of the research that might have led to risks to the participants.

The situation is that some less ethical corporations allow their socio-ethical boundaries to gradually creep forwards, and it is only when we look back at how far they have been stretched that we get a perspective of the distance of travel. My personal view is if academic researchers and academic publishers do not start contributing to the debate and to govern the quality of research, then who will?

One friend drew parallels with the ‘frog in the pot’ experiment. Don’t worry, no frogs were harmed in the making of the video.

https://www.youtube.com/watch?v=svpsLZDgFK4