Category Archives: Genetics

UC Berkeley Genetic Testing Affair: Science vs Science Education – guest post by Dr.Marie-Claire Shanahan

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.

The Benefits and Burdens of Genetic Testing

New podcast and forums at World Science: The Benefits and Burdens of Genetic Testing:

Listen to a story by reporter Marina Giovannelli, followed by our interview with Mayana Zatz.
Download MP3
Our guest in the Science Forum is geneticist and genetic counselor Mayana Zatz. She directs the Human Genome Research Center at the University of Sao Paolo.
Zatz has been working with patients with inherited disorders for nearly two decades. When it comes to genetic testing, Zatz advocates caution. Tests for some inherited disorders have helped people decide whether or not to have children. But in most cases, Zatz says genetic testing raises complex psychological and ethical issues:
* Should children be tested for late-onset disorders like Huntington’s disease and cerebellar ataxia? Doing so could lead to a life of dread, as they wait for a disease for which there is no cure.
* Interpreting the results from a genetic test can be difficult, especially for complex diseases like cancer or Alzheimer’s which are triggered by multiple factors, not just genetics.
Come join the conversation with Mayana Zatz. She’s taking your comments and questions through July 13th.
* Have you had your genes read? How did the results change your life?
* Should companies offering such tests be regulated?
* What kinds of medical benefits can we expect from genomics research in the coming years?

It’s not genetic (video)

Personalized Medicine: Too Much Information / Too Little Information

Next American Scientist Pizza Lunch:

It’s not often that we get to dive a little deeper into a topic encountered at a recent pizza lunch talk. But we will this month. In March, Geoff Ginsburg from Duke briefed us well on the current science regarding genomic (or personalized) medicine and its promising applications. At noon on Tuesday, April 20, Jim Evans from UNC-Chapel Hill will discuss the complexity of implementing this new medicine with a talk entitled: Personalized Medicine: Too Much Information / Too Little Information. Like Dr. Ginsburg, Dr. Evans is a doctor-scientist. He is also editor of the journal Genetics in Medicine and sits on an advisory committee to the U.S. Secretary of Health and Human Services on genetics, health and society.
American Scientist Pizza Lunch is free and open to science journalists and science communicators of all stripes. Feel free to forward this message to anyone who might want to attend. RSVPs are required (for the slice count) to cclabby@amsci.org
This time, we’ll be back at our home base, Sigma Xi in Research Triangle Park. You’ll find directions here:

http://www.sigmaxi.org/about/center/directions.shtml

American Scientist pizza lunch – genomic and personalized medicine

From the American Scientist:

Our American Scientist pizza lunch talk falls later than usual this month to accommodate our magazine’s May-June issue deadline. Keep open the noon hour on March 30 and come hear Geoff Ginsburg, director of the Center for Genomic Medicine at Duke University, discuss genomic and personalized medicine.
To keep you on your toes, we’ll convene at a different spot: the easy-to-get-to headquarters of the NC Biotechnology Center here in RTP. Actually, as many of you know, there would be no pizza lunch this year without the support of the Biotech Center. In addition to their financial help, center staff kindly offered to host one of our gatherings this year.
American Scientist Pizza Lunch is free and open to science journalists and science communicators of all stripes. Feel free to forward this message to anyone who might want to attend. RSVPs are required (for the slice count) to cclabby@amsci.org
Directions to the NC Biotechnology Center are here:

http://www.ncbiotech.org/about_us/regional_offices_and_directions/directions/index.html

Can Genetically Engineered Crops Help Feed the World?

A new forum at World Science is up. As always, listen to the podcast first, then ask questions in the forum:

This week, India rejected what would have been the country’s first a genetically modified food crop, a transgenic eggplant.
The company that developed it, an Indian subsidiary of Monsanto, claims the crop would reduce pesticide use and boost yields. But the Indian government has decided to do independent assessments of the crop’s potential impacts on consumer health and the environment.
What does this mean for the future of GM crops in India and elsewhere? And does this technology have a role to play in feeding the world’s hungry?
We put these questions to Dr. Lisa Weasel. She’s a professor of biology at Portland State University, and the author of Food Fray: Inside the controversy of genetically modified food. She writes that GM crops are more of “a condiment than a main course” in solving the world’s food shortage.
Now it’s your turn to chat with Lisa Weasel. Join the conversation — it’s just to the right.
* Human beings have been altering plants ever since the beginning of agriculture. Why is genetic engineering any different from the older, more traditional ways of tinkering with crop varieties?
* Is there any scientific evidence of harm to human health from eating GM food?
* Why are small farmers in developing countries especially concerned about GM crops?

Science Cafe Raleigh: Dog Genome: Teaching Scientists New Tricks

Dog Genome: Teaching Scientists New Tricks
November 17th; 6:30-8:30 pm with discussion beginning at 7:00 followed by Q&A
The Irregardless Café, 901 W. Morgan Street, Raleigh 919.833.8898
This year, roughly 66,000 people will be diagnosed with non-Hodgkin lymphoma, while another 22,000 will be diagnosed with cancers of the brain. In parallel, our pet dogs also suffer from a range of similar spontaneous cancers. For thousands of years, humans and dogs have shared a unique bond–breathing the same air, drinking the same water, and living in the same environment. During the 21st century this relationship is now strengthened into one that may hold intriguing biomedical possibilities. Using the ‘One Medicine’ concept–the idea that human and animal health relies on a common pool of medical and scientific knowledge and is supported by overlapping technologies and discoveries; research is revealing that the dog genome may hold the keys to unlocking some of nature’s most intriguing puzzles about human cancer.
About the Speaker: Dr. Matthew Breen, professor of genomics in the NC State University College of Veterinary Medicine, co-directs the Clinical Genomics Core of the Center for Comparative Medicine and Translational Research at NC State. Dr. Breen’s lab http://www.breenlab.org/ helped map the canine genome in 2004 and the internationally known research scientist has conducted studies and published articles on numerous comparative medicine investigations of canine and human cancers including non-Hodgkin lymphoma, meningioma, and other cancers of the brain. A member of the Cancer Genetics Program at the University of North Carolina’s Lineberger Comprehensive Cancer Center, Dr. Breen’s collaborative investigations involve Duke University Medical Center and the University of Minnesota Medical Center among others.
RSVP: katey.ahmann@ncdenr.gov; or call 919-733-7450 ext 531