Facebook and ‘Being Experimented Upon’

•August 21, 2014 • Leave a Comment

Following on my recent blog posting about the Facebook emotion-manipulation study, here’s a useful piece from The Atlantic: How Much Should You Know About How Facebook Works?

The piece focuses on the ubiquity of constantly-tweaked algorithms in online services such as Google and Facebook. The algorithms such companies use today are quite different from the ones they used 5 years ago, in part because the companies are constantly experimenting and using the results of those experiments to adjust the “math” behind your Facebook newsfeed and your Google search results.

Cornell professor Jeff Hancock, one of the authors of the infamous study, is quoted as asking: “If you think about Google search and you say, ‘I don’t want to be experimented on,’ then the question is, well, what does that mean?

Good question!

The Facebook Emotions Study

•July 24, 2014 • 1 Comment

Over at my Business Ethics Blog, I just posted my thoughts on the recent controversy over the Facebook / Cornell study. I look at the question not of the ethics of the Cornell researchers, but of Facebook as a corporation I basically argue that:

a) the risks involved were trivial;
b) the commercial context matters, and permits certain kinds of experimentation;
c) the study was, from Facebook’s point of view, closer to ‘program evaluation,’ (i.e., closer to a kind of study that is normally exempt from research regulations anyway).

You can read the whole thing, here: Facebook’s Study Did No Wrong.

Here also is the view of 33 bioethicists, published in Nature, saying that while prior ethical review would have been a good idea, the study was not fundamentally unethical:
Misjudgements will drive social trials underground.

Research ethics scandals in Canada, you ask? Sadly, yes.

•July 23, 2013 • 1 Comment

There are certainly plenty of people who think that research ethics scandals happen everywhere else, but not in Canada. Well, it seems that a recent report by food historian Ian Mosby at the University of Guelph has uncovered that, yes, in fact research ethics scandals can, do and have happened in Canada.

Mosby’s report, published in Histoire Sociale/Social History, provides “a narrative record of a largely unexamined episode of exploitation and neglect by the Canadian government” and describes ten years of nutritional experiments conducted on 1300 Aboriginal adults and children, including those in residential schools. These funded studies were done without community or individual consent, without an assessment of potential benefits and risks, without any consideration of the extreme vulnerability of the persons and without any clear humanitarian or altruistic aims or realization of benefits to any people involved while exposing them to real harms. That’s just the beginning of the problems.

The details of the report are horrific.

What is most shocking about this is that these researchers were in communities in which they already knew there were significantly higher general and infant mortality rates (compared to anywhere else at that time in Canada), high rates of malnutrition and hunger along with high rates of TB and other diseases, and yet when they arrived — and these documented facts were clearly confirmed by what they observed ‐ they saw this as a clear opportunity and a kind of living laboratory, rather than a humanitarian tragedy that required their intervention.

Many people, upon first hearing of these experiments, will wonder why the principles of research ethics were not followed here or why the obvious potential and actual ethical problems involved were not addressed in any way. Well, those who are familiar with research ethics know that, during the time these experiments were being conducted in Canada, the Doctor’s Trials were taking place in Nuremberg, Germany after the Second World War (1946-1947). Out of that trial came the Nuremberg Code which outlined ten principles of ethically sound research, including the requirement that research subjects must provide voluntary consent. This challenged the paternalistic approach to research that, in some cases, assigned little to no inherent value to persons who were simply research subjects and nothing more. But what’s important to realize is that it really isn’t the case that as soon as the Nuremberg Code was established, everything instantly got better for research subjects and researchers stopped exploiting persons. That didn’t happen and in many cases, research that was ethically problematic continued, despite the Nuremberg principles. It has taken many years for these principles to become the norm – to become realized, formalized, institutionalized and embedded in the culture of research. Consider the Tuskegee Syphilis Study which was not stopped until 1972 and only then after about 6 years of active lobbying by a persistent whistleblower.

According to the Toronto Star:

These experiments aren’t surprising to Justice Murray Sinclair, chair of the Truth and Reconciliation Commission. The commission became aware of the experiments during their collection of documents relating to the treatment and abuse of native children at residential schools across Canada from the 1870s to the 1990s.
It’s a disturbing piece of research, he said, and the experiments are entrenched with the racism of the time.
“This discovery, it’s indicative of the attitude toward aboriginals,” Sinclair said. “They thought aboriginals shouldn’t be consulted and their consent shouldn’t be asked for. They looked at it as a right to do what they wanted then.”

Here are some links to the media coverage of the release of the report:

Hungry Canadian aboriginal children were used in government experiments during 1940s, researcher says

Canadian government withheld food from hungry aboriginal kids in 1940s nutritional experiments, researcher finds

Past abuses linger over First Nations education debate

When Canada used hunger to clear the West

Here, as well, is a link to Chapter 9 of the Canadian TriCouncil Policy Statement on Research involving the First Nations, Inuit and Métis peoples of Canada.

Ethical Design for Cluster Randomized Trials

•November 22, 2012 • Leave a Comment

A team led by our friend and colleague Charles Weijer at the University of Western Ontario has just issued guideliens for what are known as “cluster randomized trials” (CRTs).

See the story here:
Western-led team delivers world-first ethics guidelines.

CRTs are clinical trials in which randomization occurs across groups of participants, or across institutions, rather than across individual participants. In other words, each participant is not randomized into one arm of the trial or another. Rather, randomization is done at the higher level — an entire institution’s patient, population is treated as a unit for purposes of randomization. This raises a number of interesting ethical issues. These new guidelines will surely help advance our understanding, as well as highlighting an important range of issues for those of us not previously aware of them.

Clinical Trials in Russia

•November 12, 2012 • Leave a Comment

Generally, when westerners think of people in foreign lands participating as human subjects in clinical trials, we think of the developing world. That image is somewhat incomplete.

This was from September, but well worth a look at this NYT piece if you missed it:
Russians Eagerly Participate in Medical Experiments, Despite Risks

As a test subject in a Russian clinical trial for an experimental weight loss drug, Galina I. Malinina had to inject herself in the stomach daily. … she threw up every day for two weeks, yet stuck to the regimen, something valued by companies, as dropouts are expensive.
“It’s wonderful,” she said of the test substance, a weight loss serum under development by the Danish biotechnology giant Novo Nordisk. In addition to losing 22 pounds in a year, she said, “I became more lively; I walk easier and I have energy.”

Why go through this? For the same reason that people sign up for clinical trials in India or rural China.

Patients, as was the case with Ms. Malinina, are eager to join trials because often it is the only way to receive modern medical care.

Is this predatory? Are drug companies testing drugs on poor Russians in order to sell drugs to wealthy Americans, Canadians, and Brits? The answer is not so simple. The Russian government, apparently, is pretty excited to provide incentives for drug companies to conduct trials there:

…under a law passed in 2010, ostensibly on health grounds, foreign drug companies must test medicine on Russians for it to be marketed in Russia.

Interpreting Canada’s TCPS2

•January 17, 2012 • Leave a Comment

Canada’s Interagency Advisory Panel on Research Ethics has begun putting online its interpretations of the second iteration of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (a.k.a. “TCPS2”).

“The Interagency Advisory Panel on Research Ethics (the Panel) is pleased to share a growing collection of its responses to written requests for interpretation….”

The website also explains the role of the Panel in interpreting the TCPS2, as well as featuring a nifty feedback function attached to each interpretive note.

Cracking Down on Research Misconduct at a Chinese University

•January 14, 2012 • Leave a Comment

Here’s an interesting bit on one Chinese university’s efforts to crack down on research misconduct:

From Nature: Research ethics: Zero tolerance — A university cracks down on misconduct in China.

Most readers of this blog will know that research misconduct doesn’t fall under the heading of Research Ethics, as that term is normally applied to the work of Research Ethics Boards and Institutional Review Boards. But neither are the issues entirely separate.

Here’s a paragraph I found particularly interesting, about the causes of misconduct:

Cao and other experts on misconduct point to specific contributing factors. China’s research system has developed very rapidly, and universities are scrambling to train the influx of students, scientists and administrators. “As a large, newly developed system of research, China does not have the control of its research programmes that is found in the West,” says Nicholas Steneck, who studies research integrity at the University of Michigan in Ann Arbor. Some researchers are simply oblivious to the rules, says Zhong Haining, a neuroscientist who trained at Tsinghua University and is now starting a lab at Oregon Health and Science University in Portland. “The official guideline for scientific misconduct may (or may not) exist, but it’s not very well publicized, at least not emphasized so much in training,” he says.

I wonder if the causes of misconduct are so different in other places?