ethics - Tag Archive

Facebook’s Social Research Experiment

1 Reply Jonny Hankins

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Facebook are back in the news again, this time for conducting research without the consent of their users. Although maybe that is a false statement, users may well have signed those rights away without realizing too.

All Facebook did was to “deprioritizing a small percentage of content in News Feed (based on whether there was an emotional word in the post) for a group of people (about 0.04% of users, or 1 in 2500) for a short period (one week, in early 2012). Nobody’s posts were “hidden,” they just didn’t show up on some loads of Feed. Those posts were always visible on friends’ timelines, and could have shown up on subsequent News Feed loads”. This is the explanation offered by the author of the report about the experiment. Read the full text here.

Simply speaking they wanted to adjust the type of information a user was exposed to to see if it effected their mood. So if a user receives lots of positive news, what will happen to them? What will they post about?

Some studies have suggested that lots of Facebook use tends to lead to people feeling bad about themselves. The logic is simple, all my friends post about how great their lives are and about the good side we might say. I who have a life that has both ups and downs are not exposed to the downs, so I feel that I am inadequate.

This sounds reasonable. I am not a Facebook user but the odd messages I get are rarely about arguing with partners, tax problems, getting locked out of the house, flat tyres, missed meetings or parking tickets. I presume Facebook users do not suffer from these issues, they always seem to be smiling.

So in order to test the hypothesis a little manipulation of the news feed. More positive or more negative words, and then look to see how the posts are effected. The theory above does not seem to hold water as a statistic however, although bearing in mind the methodology etc (and the conductor) I take the claims with a pinch of salt. More positive words tend to lead to more positive posts in response.

Hardly rocket science we might say.

I have a degree in sociology, an MA in Applied Social research and work in the field. Conducting experiments of this type is not allowed in professional circles, it is considered unethical, there is no informed consent, rights are infringed upon and the list goes on. What if somebody did something serious during the experiment?

Of course “The reason we did this research is because we care about the emotional impact of Facebook and the people that use our product”.

If readers are interested in looking at a few other fun experiments that might be considered ethically dubious I can offer a few. Check out the Stanley Milgram experiment, where people administered (False) electric shocks to other people who got the answers to their questions wrong. Yale University here, not a fringe department of Psychology. Researchers were investigating reactions to authority, and the results are very interesting, but you couldn’t do it today.

Or how about the so-called Monster study. The Monster Study was a stuttering experiment on 22 orphan children in Davenport, Iowa, in 1939 conducted by Wendell Johnson at the University of Iowa. After placing the children in control and experimental groups, Research Assistant Mary Tudor gave positive speech therapy to half of the children, praising the fluency of their speech, and negative speech therapy to the other half, belittling the children for every speech imperfection and telling them they were stutterers. Many of the normal speaking orphan children who received negative therapy in the experiment suffered negative psychological effects and some retained speech problems during the course of their life. The University of Iowa publicly apologized for the Monster Study in 2001.

Terrible as these experiments may sound, they were conducted in the name of science. Their results may have proved useful. Facebopok (along with 23andME and other commercial entities) are behaving in the way they are because they want to make more money, their interest is solely there (even if they dress it up as better user experience). And in the case of Facebook they have access to 1.3 billion users, and mandate to do whatever they like with them.

The FDA Shuts Down Home Genetic Testing Company 23andMe

8 Replies Jonny Hankins

On Monday the US Government FDA forced the main home testing company 23andMe to stop selling its saliva genetics home testing kit. As this is their only product this means that they effectively shut down their operation.

Looking at Genes

Looking at Genes

The problem seems to be that the company is offering testing for gene mutations that may lead to rises in probability of contracting diseases. This is considered a medical test by the FDA, and so they require trials and results in order to see how well the tests work before they license them. 23AndMe have been unable or unwilling to provide such results, so cannot market their device unless they take away all of the medical arguments.

This is the technical reason, but there are serious ethical issues surrounding home genetic testing. The following are just a few of my own ideas:

Without serious research doubt must remain about the quality of the results. The samples are not second tested, and the quality of testing cannot be of the same level as other medical hight cost exams. There have been problems reported due to the small number of people involved in the test groups, as statistics require masses of data that are not yet available.

Are customers qualified to interpret the results? What does a statistical rise in probability actually mean to a person that has never studied statistics or probability? And the results are delivered without any counseling, so if there is bad news the customer is left to process the information alone.

Here just a few examples might demonstrate the difficulty. If I have a 1% chance of contracting problem A, but I have a gene variant that means that I am 70% more likely to contract it, I might be distraught. The reality is that I now have a 1.7% chance, very little difference, but I might try to change my lifestyle, treat my kids differently, get paranoid, have preemptive surgery, who knows how an individual will react without medical advice?

If on the other hand I am negative for a mutation for something I might adopt an equally problematic stance. I don’t have the gene mutation that leads to skin cancer so I can stop worrying and have another hour on the sun bed. Social factors are really the big ones in many cases.

And what about testing your children? How will parents react knowing that their child might be susceptible to certain problems later in life?

Oh and if I discover that I have something hideous, should I tell my brothers? They might carry it and pass it on to their children. How personal is this type of medicine? It is familial, not individual.

The 23andMe problem is a prime example of money ruling. They have operated for 6 years, without regulation and blatantly challenging the FDA and medical profession that they see as holding up progress. As far as I can see this is about as far away from the responsible innovation that I have spent my recent life trying to promote as I would like to see anyone go. I would add though that it is a systemic problem here in the USA, not a personal divisive choice, and it is very different to the European approach underscored by the precautionary principal (with all its critics).

For further reading you will find several of my articles linked through this post on the same subject from last year.

The National Post has a good article too that includes both sides of the argument.

Sequencing Baby DNA, a Project in Boston

1 Reply Jonny Hankins

Last week the Science in Mind blog on my local Boston.com website ran an interesting story that is definitely worthy of reflection. It involves 2 local hospitals that are carrying out a project funded by the National Institute of Health (USA). The projects involve sequencing the DNA of newly born babies over the next 5 years. Read all about it here.

Babies to have their DNA sequenced

Babies to have their DNA sequenced

Now sequencing the DNA of babies carries with it several risks and ethical concerns, as well as well argued benefits. If we take the benefits first, doctors may gain information about a baby, such as high risk for a certain disease, genetic mutations that may require changes of lifestyle etc. They might also find explanations for problems that might otherwise go undetected.

There are though as I say risks and concerns. How will parents react if they discover that their baby has a high risk of an incurable disease? How will the knowledge gained through the test effect the way the parents view and behave towards their children? Are we giving families information that will change their understanding of parenting to such a degree that it might destroy the very fabric of their social relationships?

This is not to mention the social implications of giving out such information regarding extended family. If for example I am told that my baby has a genetic mutation carried by the parents that might have a serious effect on its life, should I tell my brothers and cousins so that they can screen their prospective wives, make decisions about having children or even worse a pregnancy already in course? And not to mention the obvious problem of discovering that the father is not the man stood in the room with the mother.

These problems are in fact the issues that the researchers running the project are hoping to look into. The question is if the clinical benefits outweigh the risks of such an approach.

I have written a lot about this subject in recent years if you would like more to read:

In June of last year I wrote a post here on Technology Bloggers called Sequencing the Genome of Unborn Babies. I also raised a lot of similar ethical concerns in May of the same year in Home Genetic Testing, Pros and Cons.

On the Bassetti Foundation we find DNA Privacy Issues from January of this year, a series called Architectures for Life from 2012 and a review of a book called Go Ask Your Father, just for starters.

My own personal view is that much of the promise peddled to us surrounding medicine and the sequencing of the human genome has yet to be delivered. One problem is money. Personalized medicine sounds like a great idea. I get my genome sequenced, we can see which drugs might work the best, the type of treatment I need etc. But drug companies cannot make, test and market a drug especially for me even with all of this information, it is just not cost effective. They want big sellers, generic medicines that work to some extent on everybody, not something that is fantastic for me with my particular gene pool.

There are clinical benefits, I am not arguing otherwise, but we must wait to see how great.