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The More Things Change

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About 10 years ago, when I was a community college instructor, I started a course called "Biotechnology and Society." My goals were two-fold: I wanted to recruit non-traditional students and also to reach out to students who might otherwise never have the opportunity to learn how biotechnology was about to change their future. We lured those students in by promising them credit for taking a lab (which they did) and, of course, the cool and amazing topics we covered in a warm and friendly fashion. We emphasized good science but swore off the cutthroat pre-med kind of atmosphere. Dolly, the first cloned sheep, made the news during the first quarter the course was offered, so as you can imagine, we had a good time.

In the lab part of our course, students isolated DNA from items they brought from in from the grocery store, used PCR to fingerprint the DNA from their cheek cells, created genetically engineered tobacco with Agrobacterium, made blue E. coli with lambda phage, and transformed E. coli with green fluorescent protein. We had lots of fun moving DNA around and messing with phenotypes!

In the lecture half, we explored the science and talked about issues. Yes, issues, issues, issues. We watched Jurassic Park. We brought a former Monsanto scientist in to talk about bovine growth hormone and explain why some people think having more milk is a good thing. We had a scientist with AIDS talk about HIV research, a forensic scientist talk about O.J. Simpson and DNA testing, and a gene therapy researcher describe his work. And we spent lots of time on the human genome project and the ethical, legal, and social implications.

All of these sessions came flooding back to me a couple of weeks ago as I sat in the audience at a University of Washington panel discussion on the personal genome. The discussion was billed as a conversation between technology experts — Eric Lander, George Church, Leena Peltonen, Maynard Olson, and Bill Gates — and the public. I doubt many people outside of the UW seminar mailing list were aware of the panel, though, especially since I recognized a large portion of the audience from my years in graduate school and my husband's days as a postdoc.

Surprisingly (or maybe not), the questions were the same questions that popped up 10 years ago, and the answers were equally vague. Yes, technology has progressed. Yes, we can do more. But no, the questions haven't gone away, and many of the issues are still unresolved, with the exception perhaps that once the Genetic Information Nondiscrimination Act gets signed into law, you might have better luck getting insurance.

In general, I believe that knowledge is a wonderful thing, and there are many benefits to knowing what's in our genes. I want to know if I'm going to be poisoned by eating fava beans, if I should give blood more often, or if I have surgery, whether I'm likely to die from the anesthetics. I also want to know where my ancestors have been and the history of my family. A family might be reassured to know that a child who's extremely shy or gay or a night owl has those traits because of their genes and not because of parenting choices.

Naturally, there were all kinds of questions for the panel about designer babies and eugenics. Predictably, the panel members seemed to feel that designer babies were unlikely and that eugenics is a bad idea. They talked a lot about competitive parents and whether parents would look for genes to boost kids' performance on tests. I was a little surprised that none of the speakers mentioned the large-scale experiments in eugenics taking place in the world right now. The May 2008 issue of National Geographic states that 119 baby boys are born in China for every 100 girls and that by 2020, China will have 30 million unmarried young men. This is no coincidence; this is people making decisions based on genetic information. Are we so focused on hypothetical problems that we're missing the obvious issues already at hand? Let's face it: individual choices can have large cumulative effects.

There was another funny twist in the discussion. Leena Peltonen pointed out the lack of African genomes in the current collection. This is a scientific shortfall since African genomes will have the most diversity. At the same time, however, the panel seemed disappointed with certain ethnic communities for not wanting to contribute their genome sequences to the rest of world. They seemed to think that communities should be willing to donate their genetic assets for the benefit of mankind and not worry about protections from "genetic prospecting."

Nancy Wexler, the last speaker at the UW Personal Genome Symposium on the day after the panel discussion, put it best when she said that caution is warranted. "Genetic information isn't always benign," she said. Then she made the entire audience squirm in their seats when she described how people watch you when they know you're at risk to develop to a severe disease like Huntington's. "They're always watching to see if you show symptoms," she said. And she was right. It's the same when you've had a relative with Alzheimer's disease. You watch all your older relatives with a bit more anxiety whenever they lose their car keys or forget a name.

The difficulty about many of the questions surrounding genomics is that these are not questions that can be solved simply by improving the technology. These are the questions that cut to the heart of your relationships with the people you love. What if you're getting married and your husband's family wants to know if you carry an allele for sickle cell disease? Or Tay-Sachs? Or perhaps hemophilia, a disease that may not be lethal but is very expensive to treat? Will you be cut off from your new family? If you have children and they're sick, will the family blame you?

All of this makes me wonder about the ELSI (ethical, legal, and social implications) program that was funded by part of the Human Genome Project budget. Why do we only hear from the people who develop technology and never from the people who were tasked with finding answers?

Sandra Porter, PhD, is the director of education at Geospiza. Her blog is located at scienceblogs.com/digitalbio.

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