When You Are the Product and The Product Is Research

By Tim Rubbelke 

In mid-2014, researchers at Cornell University released a study titled “Experimental evidence of massive scale emotional contagion through social networks.”  The general idea of the study was that manipulating the Facebook feeds of users to display either primarily positive or negative posts caused subjects’ mood to shift accordingly.[1]  The study involved over 600,000 individuals.

Soon after the study was published, tech websites took notice.[2]  One of the obvious questions was whether the study participants had consented and whether they knew they were part of this study.

Facebook pointed to a broad clause in its “Data Use Policy” (DUP) as implying consent (although it seems no one in the study was aware of their participation.)  Some sites questioned whether the clause in question was even in the DUP at the start of the experiment.[3]

In light of the criticism, the Proceedings of the National Academy of Sciences (PNAS) (the journal that published the research) issued an Expression of Concern about the study.[4]  In it they noted that Cornell’s IRB chose not to weigh in on the research because the data their researchers received was anonymized and thus it was not human subjects research under the regulations.

While Cornell’s decision likely fits the technical description of the human subjects research regulations, it serves to highlight a very interesting question: when researchers (and institutions) receive data, should they be concerned about how the data was collected?

One hopes that Facebook carried out the experiment in an ethical manner, but without oversight we cannot be sure.  It certainly seems that at the very least many participants were subjected to a form of harm—by having their moods unknowingly altered to be sadder.  Perhaps more disturbingly, the study gives no indication of what would happen if a participant’s emotions swung far beyond the expected range.[5]

The rules and regulations surrounding academic research are designed to hold it to a high ethical standard, especially regarding the treatment of human subjects.  When data is shared between academic institutions then the research will be subject to the oversight of at least one institution.  In the case of data from private sources (such as Facebook) things are substantially murkier.  As the PNAS expression of concern noted, privately funded organizations like Facebook do not have to follow the Common Rule.  This is compounded by the fact that, as saying on the internet goes, “If you’re not paying for it, you are the product.”[6] Still, as one expert interviewed by CNet pointed out, the experiment carried out by Facebook went beyond the normal types of platform and advertising enhancement most websites carry out.[7] Furthermore if academic researchers are going to accept data from privately funded entities, and wish to maintain the high ethical standards, they should be cognizant of how the data was collected.

As Kahn, et al. note, it’s inadvisable to try and shoehorn a 20^th century research regulation apparatus onto a 21^st century world.[8]  And yet, as we try to bring the research oversight into the modern world we should be careful not to discard bedrock principles either. After all, public trust in academia is what fosters participation in research.

Tim Rubbelke is a PhD Candidate at the Saint Louis University Albert Gnaegi Center for Health Care Ethics. He contributes regular pieces on research ethics. 

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[1] http://www.pnas.org/content/111/24/8788.full.pdf

[2] http://www.cnet.com/news/facebooks-mood-study-how-you-became-the-guinea-pig/

[3] http://www.cnet.com/news/facebooks-emotion-manipulation-study-faces-added-scrutiny/

[4] http://www.pnas.org/content/111/29/10779.1.full

[5] Additionally there’s no information about the age of the subjects.

[6] http://lifehacker.com/5697167/if-youre-not-paying-for-it-youre-the-product

[7] http://www.cnet.com/news/facebooks-mood-study-how-you-became-the-guinea-pig/

[8] http://www.pnas.org/content/111/38/13677.full

Thoughts on NUBC: Learning What It Means to "Do" Bioethics

By: Dr. Tiffany Cvrkel

A few weeks ago a group of my undergrad students and I returned from our very first National Undergraduate Bioethics Conference (NUBC). I thought I’d write down a few thoughts about our experiences, and (hopefully) make a case for why attending this conference is a uniquely worthwhile experience.

We have a pretty thriving group of undergraduate bioethicists at UCLA. Most are pre-med students who do independent research in bioethics as a compliment to their intensive lab work and hard science curriculum. They are a passionate (and inspiring!) bunch, and they are always looking for ways to connect with their peers at other institutions.

And that’s the story of how they – not me, their faculty mentor! – found out about NUBC. As they were browsing this “Bioethx Under 25” blog, they found a listing for a conference aimed especially at them. I got an email pitching a trip to Chicago.

It was fitting start. While faculty members are involved in the orchestration of NUBC, much of it is run by undergrads for undergrads. A few of my students decided to submit papers to the conference, and Jessica Kriksciun (one of our seniors) had her paper accepted. They also decided to form a Bioethics Bowl team and compete during the tournament. None of us had any idea what a “Bioethics Bowl” looked like, but it sounded like a decent way to spend a Saturday.

If you’ve never been to a NUBC before, you should know it is an odd marriage of two very different events. The first is the conference itself, run in a mostly traditional way -- paper presentations along with brief Q&As. The second is a tournament event called the “Bioethics Bowl,” where student teams compete by giving well developed/supported arguments and objections regarding bioethics cases. The team with the better arguments wins.

I’ll give you a few moments here to quip about competitive bioethics. Many of my colleagues found this whole set-up an endless source of hilarity. And to be honest, I was a little wary. Some of my colleagues were worried that this kind of thing just reinforces combative relationships between bioethicists – a problematic dynamic that already exists in some places of our discipline. It’s hard enough to work in a cross-discipline space. Shouldn’t we all be trying to get along, not score points against each other?

I had another, slightly different worry. When I paged through the cases that the Bioethics Bowl would be using, I noticed the “ripped from the headlines” format. But the fact that these are real cases involving real people adds an additional burden for our students. I am close with some of the ethicists who worked on one of the cases in this year’s packet. I saw first-hand the devastation and anguish that this case caused for everyone involved. I feared real people’s stories might be turned into nothing more than rhetoric-laden debate fodder, cheapened to score points.

I am not against debate as an intellectual exercise. I was on my school’s debate team as a student, and once upon a time, I coached it. But the goals of debate are not always to find the most subtle, respectful, and nuanced lines of reasoning. The people from these cases? They deserve nothing less.

And when the Bioethics Bowl came around, there was indeed some debate-style rhetoric and hyperbole. But happily, this was not the norm. Most of the teams we saw weren’t trying to be cut-throat in point scoring. They were trying to work through the issues in genuine and sincere ways. There was a lot of “we agree with our opponents on their position, but we’d like to raise an issue that might have been overlooked” kind of dialogue – the kind of dialogue that happens in professional ethics committee meetings. And with a few exceptions, my students left each round feeling like they both made new friends and got to practice articulating true, difficult positions.

But the Bioethics Bowl – by far – was not the highlight of the conference, which you would never know by looking at the attendance numbers. It quickly became clear that there are also two demographics at NUBC, the people who were there for the conference and the people who were there only for the Bioethics Bowl. And the vast majority of people fell into the second category.

This was such a shame. The conference part of the NUBC was amazing. Sitting around the breakfast table before a day of presentations, all of us huddled together, the following conversation happened. One of my students asked, “Um, Dr. Cvrkel? What kinds of questions should we ask the presenters? I’ve been to lots of conferences where I’m not really supposed to ask questions, and this is the first time I’ve been at a conference where I’m the intended audience! What does a good question look like?”

And that’s when we discussed the difference between being a student and being a colleague. We talked about the art of asking useful and supportive questions instead of “gotchas.” We talked about when follow-up questions are appropriate and when they’re not. We talked about how to approach someone to discuss related projects. We talked about how to do bioethics in the real world.

I teach two large lecture classes every quarter; that’s hundreds of students, multiple times a year. And while I try to teach each of my students some of the finer points of bioethics, the famous authors, the important arguments, I can never offer them the experience of doing bioethics with their peers. We always have a power differential in traditional learning environments, and this means students never get to practice wielding their knowledge as equals. But at NUBC, they present their ideas not as students looking for approval, but as scholars looking to advance an idea. And they sit in the audience not merely to learn, but to engage.

The NUBC has been the one environment where my students experienced what it is like to be bioethicists. And that’s not easy to teach. But of all the things I’ve tried to teach my students, I can’t think of any that are more valuable.

The folks at Loyola University of Chicago put on a wonderful conference, and though it was our first, it won’t be our last. We’ll be in Florida for NUBC 2015—you should join us.

Dr. Tiffany Cvrkel is a philosopher, bioethicist, and lecturer in UCLA’s Molecular, Cell, & Developmental Biology department. She is also the faculty adviser for UCLA’s Undergraduate Bioethics Club (aka: The Bioethics Brigade) and runs the UCLA Bioethics Lab, where students do advanced/independent bioethics research.

@BioethxChat: Let Your Voice Be Heard

By: Jennifer Chevinsky

Bioethics is a field that should matter to everyone.  Whether you are a bioethicist, healthcare professional, student, patient, or member of the general public, you will encounter topics such as organ donation, body image, and end of life care. You will have decisions to make when you walk into your healthcare provider’s office, whether you choose to follow a treatment plan, or refuse traditional medicine.  Ethical questions are not always easy or straightforward, but having an opportunity to join with individuals from different fields and with varying levels of expertise can encourage a broader understanding of a multitude of aspects that alone, one may not have considered.

                               

BioethxChat is a live tweetchat account, started in October of 2013 by @jchevinsky to reach an interdisciplinary group of students, professionals, and members of the general public. Live chats are hosted every Monday at 8:30PM EST, and cover a large range of disciplines, but specifically focus on the intersection of science and ethics.  The chat has gained a reputation of asking ‘the hard questions,’ and encouraging open, honest, and respectful discourse.  The goal of each chat is to unpack the ethical aspects of a number of complicated topics within a particular theme, helping individuals to reach better-informed positions.

In the short time that BioethxChat has existed, ‘#Bioethx’ has been called “one of the ‘alwaystrending’ influential hashtags in healthcare on Twitter,” and was also included in George Washington University Masters in Health Administration’s list of “Top 5 Twitter Chats for Health Administrators.” With the verification of the ‘Bioethx’ hashtag and addition to Symplur’s Healthcare Hashtag project, individuals can access transcripts, analytics, and other data about the chat for free.

Additionally, the chat has been a great platform to join with experts and activists to discuss important ethical issues.  For example, BioethxChat joined with the Death with Dignity National Center to bring forth a discussion on ‘A Dignified Death.’ Other topics that have been covered include ‘Sexuality and Gender,’ ‘Disability Ethics: Autonomy, Rights, andDignity,’ and ‘Domestic Violence.’ The BioethxChat website includes a full list of topics that have been covered, along with their associated transcripts, and helpful resources.

Bioethxchat will consider hosting a chat on any topic related to the broad field of bioethics, and supports the submission of topic suggestions from anyone with a passion for open, respectful dialogue. One of our most recent chats focused on ‘Professionalismand Conflicts of Interest in Healthcare,’ a topic suggested by two of our followers, who served as guest co-hosts for the chat. Among the other questions on our list, we discussed the connection between professionalism and ethics, as well as the complications of financial associations between pharmaceutical companies and healthcare providers.  The chat encourages references to foundational cases, current situations in the media, as well as personal encounters or experiences.

Social media, and Twitter in particular, has the power to unite individuals from across the world for a live, spirited conversation. Bioethxchat uses this medium to further its goal of making bioethics more accessible and inclusive, recognizing that while everyone has a perspective, not everyone is given a voice.

Let your voice be heard and join the #bioethx community this Monday at 8:30PM EST!

Jennifer Chevinsky is a medical student at the University of South Florida Morsani College of Medicine SELECT, a collaborative program with the Lehigh Valley Health Network.  She is the Chair of the American Medical Association’s Medical Student Section (AMA-MSS) Committee on Bioethics and Humanities, as well as the Chair of the American Society for Bioethics and Humanities Student Affinity Group. She is the creator and moderator of @BioethxChat (#Bioethx).