Marie-Claire Shanahan is an Assistant Professor of Science Education at the University of Alberta, in Edmonton, Alberta, Canada. As a former science teacher, she was always surprised by the ways that students talked themselves out of liking science - and she decided to do something about it. She now researches the social and cultural aspects of science and science education, especially those related to language and identity.
Marie-Claire and I first met online, then also in Real World when she attended ScienceOnline 2010, after which I interviewed her for my blog. You can check out her website and follow her on Twitter. Very interested in her scholarly work, I asked her if she would write a guest-post on one of her topics, and she very graciously agreed. Here is the post about the Berkeley genetic testing affair.
Outside of issues related to teaching evolution in schools, the words controversy and science education don't often come into close contact with one another. It would be even rarer to be reporting on legislative intervention aimed at halting science education activities. So what's going on with the UC Berkeley genetic testing affair?
News started to surface in May that Berkeley was going to be asking incoming first year and transfer students to send in a DNA swab. The idea was to stimulate discussion between students as part of the yearly On the Same Page program. A heated debate ensued that has ultimately lead to proposed state legislation that would bar California's post secondary institutions from making unsolicited requests for DNA samples from students. Both the controversy and the legislation are excellently reported by Ferris Jabr at Scientific American here and here.
It would be reasonable to assume that this seems controversial because it involves genetic testing and therefore personal information. But is there more to it than that?
I chatted informally with some friends about the issue. One expressed her divided feelings about it saying (roughly quoted) "It seems like they [university admin] have addressed the ethical concerns well by being clear about the use of the swabs and the confidentiality but something still just doesn't feel right. There's still a part of me that shivers just a little bit."
What is the shiver factor? Genetic testing and the idea that institutions might have access to our DNA do conjure some imaginative science fiction possibilities. So that could be causing the shivers. But from my perspective as a science education researcher, I think there's also an underlying issue that makes this particular situation feel controversial: despite having science education goals, this looks and feels a lot more like science. That look and feel leads to confusion about how this initiative should be judged both from an ethical perspective and an educational one.
Science and science education are not the same thing (nor should they be). One way to think of them is through activity analysis, paying attention to who is involved, what are their objectives and what are the artefacts (e.g., tools, language, symbols), actions, and rules that those involved generally agree are used to accomplish the goals of the activity. Studies in activity theory emphasize the importance of shared understanding for accomplishing and progressing in any activity. I would argue that science and science education are different (though obviously related) activities. They have, in particular, different objectives and different artefacts, rules and actions that guide and shape them. As participants in one or the other (or both), teachers, parents, students, researchers, administrators have both tacit and explicit understandings of what each activity entails - what are the rules, the acceptable tools and practices and the appropriate language.
This is where the Berkeley project places itself in a fuzzy area. The objectives of the project are clearly stated to be educational. From the On the Same Page website: "we decided that involving students directly and personally in an assessment of genetic characteristics of personal relevance would capture their imaginations and lead to a deeper learning experience." Okay, that sounds like the same reasons teachers and professors choose to do many activities. Sounds like science education.
But what about the tools? Testing students' blood type or blood pressure uses tools commonly available in high school labs (or even at the drug store). The tools used here though are not commonly available - these samples are being sent to a laboratory for analysis. Participants don't therefore have a shared perspective that these are the tools of education. They seem like the tools of science.
What about the language? One of the main publically accessible sources of information is the On the Same Page website, in particular an FAQ section for students. It starts with the questions: What new things are going on in the scientific community that make this a good time for an educational effort focused on personalized medicine? and Why did Berkeley decide to tackle the topic of Personalized Medicine? These are answered with appeals to educational discourse - to academic strengths, student opportunities, and the stature of Berkeley as an educational center. The agent or actor in the answers to these questions is the university as an educational institutional: "This type of broad, scholarly discussion of an important societal issue is what makes Berkeley special. From a learning perspective, our goal is to deliver a program that will enrich our students' education and help contribute to an informed California citizenry."
Beside these educational questions, however, are questions that are part of the usual language and processes of science: Will students be asked to provide "informed consent" for this test of their DNA? What about students who are minors? How can you assure the confidentiality and privacy of a student's genetic information? What will happen to the data from this experiment? Has this project been approved by Berkeley's Human Subjects Institutional Review Board? These questions are the questions that appear in human subjects information letters. They make this sound like this is science. The answers to these questions take a different perspective to the ones above. The technical terms are not educational ones but scientific ones. The actor in these responses is neither the educational institution nor the student as an educational participant but the student as a research object: "All students whether they are minors or not will be asked to provide informed consent. They will read and sign a detailed form describing exactly what will be done with their DNA sample, how the information will be used and secured for confidentiality, how this information might benefit them, and what the alternatives are to submitting a sample."
Anyone who has done human subjects research will recognize this language is almost word for word from typical guidelines for informed consent documents. My consent forms usually don't deal with DNA samples (usually something much less exotic, such as student writing or oral contributions during class) but the intent is the same. This language sets out the individuals under consideration as the objects of scientific research.
The overall effect is one of a mixed metaphor - is this research or is it teaching? Are the students actually acting in the role of students or are they the objects of research? What standards should we be using to judge if this is an appropriate action. The materials posted by UC Berkeley suggest that they believe this should be judged as an educational project. But the reaction of bioethicists and advocacy groups (such as the Council for Responsible Genetics) suggests that it be judged by research standards.
Why does it matter? Because the ethical considerations are different. As I said above, I don't usually deal with any materials that would be considered very controversial. I research the way people (including students) write, read, speak and listen in situations related to science. When dealing with students, many of the activities that I use for research could also be used for educational purposes. For example, in a project this year I distributed different versions of scientific reading materials. I asked students to read these in pairs. I tape recorded their conversations and collected their written responses to the text. As a classroom teacher, these are strategies that I have used for educational purposes. Tape recording students allows me to listen to the struggles they might have had while reading a text. Collecting their written responses allows me to assess their understanding. Parents would not object to their child's teacher using these tools for these purposes. When I visit a classroom as a researcher though, I am judged differently. Parents often do not consent to me collecting their children's writing. They object, especially frequently, to my requests to videotape or photograph their children. This is because they rightfully understand educational research as a different activity from education. They use different judgments and expect different standards.
From the sequence of events, it sounds as if Berkeley admin started this project with their own perspective that this was clearly educational without adequate consideration that, from an outside position, it would be judged from a research perspective. I don't want to suggest that this whole thing is a simple miscommunication because there are serious ethical implications related to asking for DNA samples. As people try to figure out how an educational idea ended up in the state legislature, though, I just wanted to add my perspective that some of the controversy might come from that shiver factor - something just doesn't feel right. One aspect of that feel might be that this challenges the boundaries of our understanding of the activities of science and science education. The language and the tools and the objectives are mixed, leading to confusion about exactly what standards this should be judged against. As tools that have traditionally been associated with laboratory science become more accessible (as genetic testing is becoming) this boundary is likely to be challenged more and more. Those making the decisions to use these tools for educational, rather than research, purposes need to understand that challenging peoples conceptions of the boundaries between science and science education can and will lead to conflict and that conflict should be addressed head on and from the beginning.
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I disagree that the ethical considerations facing educators and human subjects researchers are different. Consider a teacher who violated any of the principles of beneficence, justice, or non-maleficence, perhaps by teaching only what advanced the teacher's own agenda, or choosing only to teach white students, or intentionally teaching falsehoods. Most people would be justifiably outraged. These are principles which seem to me like good guides for almost any relationship (though not necessarily the only ones), and especially those which involve power differentials. Human subjects research obsesses over them because of a history of abuses which violate them, not because of any special difference between research and other activities. I think that Berkeley's use of informed consent language was an acknowledgment that this particular educational exercise would be unusual enough that our assumption that teachers are following the 3 principles I mentioned might be questioned, as well as an attempt to address those concerns. I think the problem here is the incorrect idea that research is fundamentally unlike activities we all engage in nearly every day.
Hi Schwa - Thanks for reading! If you'll indulge me for a second, I think my response might run along the lines of 'we agree more than you may think'. I very much agree with you that core ethical principles are no different in almost any site of interaction between people (especially those where power is involved, as is the case in both research science and science education). The examples that you give would outrage me too. My contention though, is not directed at ethical principles. Research science and science education are different activities - they have different key actors, different objectives, different rules and norms. Because these are different activities, the actions that we take or expect others to take to ensure beneficence, justice or non-maleficence can be different. Choosing to include only selected students in a research project is, in many cases, ethically appropriate. It may even serve the cause of justice for those or other students. Choosing to only teach certain students in a classroom isn't. The ethical principles are the same, but the actions appropriate to meet those principles arenât necessarily.
I also agree with you that the informed consent procedures that Berkeley used were appropriate given the potential sensitivity of the information. What I was trying to explore though is why this situation stills leaves some people feeling uneasy. Because there are mixed messages about which activity is really going on here (research science or science education) my hope was to explore the idea that it might feel a bit uncomfortable because we can't fall back on our assumptions and make easy judgements about the appropriate actions that would meet our ethical principles.
Thanks so much, Marie-Claire, for writing this, and Bora for posting it. I'm glad to see this issue discussed as widely as possible, and hope some other people will chime in!
Hi John - Thanks! I totally agree. It's a multifaceted issue that deserves discussion from many different perspectives. I was happy to have the chance to make a small contribution to the conversation.
One issue I have (as someone who generally sees the value of informed gene testing) is that Berkeley seems to acknowledge that a program is needed for students to learn about the promise, limitations, and risks of genetics testing, yet is asking students to submit samples and obtaining "informed consent" before they've completed the program. They're signing documents before they've really had an opportunity to consider these issues. I'm sure the documents are quite detailed and meet the letter of the law when it comes to informed consent, but that's where it doesn't "feel right" to me.
Further, how much pressure is a student likely to feel when thrust into a course where they've decided to opt out and not submit their samples as all around them their fellow students are involved in a very different type of experience? The pressure won't come from the University certainly, but there might be a certain inclination to provide samples just to fit in.