I got really annoyed recently when I visited one of my favorite websites, GeneCards, and discovered that it had stopped being open access. Prominently displayed in bright red letters was a warning that commercial users now had to have a license to access the database. Less prominently displayed in a small popup window was a warning that even academic users might have to register and pay in the future. Not displayed anywhere is the further restriction that GeneCards, a resource developed by researchers at the Weizmann Institute of Science, does not allow even academics to download their data. You can access gene-by-gene over the Web, but that’s it.
What makes this especially galling is that most of the information in GeneCards is collected from public sources. If these sources imposed the same restrictions on GeneCards as GeneCards imposes on us, any project would be impossible. Is that chutzpah, or what?
Let them pay?
Many academic scientists see nothing wrong with making their commercial brethren pay for access. After all, they reason, industry has lots of money. Why not make them pay?
There are two problems with this line of reasoning. First, while industry as a whole may have money, the company bank account is not a piggybank that individual scientists can raid. Even worse, scientists are never allowed to sign license agreements without a careful (read “slow”) review by the overworked (read “dreaded”) legal department, which inevitably finds it necessary to negotiate terms with the equally overworked university tech transfer office. Delay, delay, delay.
When you choose the “soak industry” option, you are implicitly expressing the following beliefs: (1) Your database is so useful for drug development that companies will pay handsomely for it. And (2) you’re willing to delay the drug developers until the company comes up with the scratch. To hell with the patients who might benefit from the drug in question! Do you really believe this?
The second problem is that restricted access makes it harder for other databases to incorporate your data and produce an even better result. For example, my group develops public databases focused on specific diseases. We collect data from multiple, mostly public sources, and present the information in ways that are more useful for scientists working on our diseases. To preserve open access to our databases, we cannot incorporate data from GeneCards and other restricted sources, even if they allow downloads.
Too bad. It means we have to spend time and money duplicating work already done. Delay, delay, delay.
Raising the bar
A wonderfully different example of open sharing comes from the world of stem cells. Professor Doug Melton from Harvard recently announced that he had derived 17 new embryonic stem cell lines which he is making freely available to researchers. These cell lines have enormous commercial value — much more than any of the databases we’re talking about — and Melton could have held out for big bucks. Instead, he’s making the lines freely available. (Sadly, the final decision is not his, but rests with the people in suits at Harvard, HHMI and WiCell. Hopefully they’ll do the right thing.)
Why such generosity? I don’t know Melton personally. Maybe he’s just a nice guy. But I suspect that part of the motivation is that he has two kids who suffer from type 1 diabetes, and stem cells are the best hope for a treatment anytime soon. Faced with a decision between money and his kids’ health, Melton made the choice that most of us would make.
This suggests a proper standard for the ethical handling of research results, including databases. Imagine your kid is sick with a chronic disease that will destroy his life in 10 or 20 years. And imagine your research can help find a cure for this disease. Now ask yourself how you’d handle your results. Restrict access and slow down research? Or open access to all, even the rich drug developers working on a cure for your kid?
The answer you’d give if your kid’s life were at stake is the ethical answer for everyone else. And who knows, 10 or 20 years down the road, it may be your kid after all. Life is like that sometimes.
Nat Goodman, PhD, is a senior research scientist at the Institute for Systems Biology and an affiliate professor of bioinformatics at University of Alaska-Fairbanks. Send your comments to Nat at [email protected].