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Esther Dyson Delivers: Lessons for Genomics From the Neterati Queen

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Long considered the queen of the Neterati, Esther Dyson was founding chairman of the Internet Corporation for Assigned Names and Numbers, the international agency in charge of establishing policy and standards for Internet infrastructure, from 1998 to 2000. As head of New York-based EDventure Holdings, she publishes the monthly tech report Release 1.0 and invests in several emerging companies. Dyson gave up some rare free time to speak to GT’s Meredith Salisbury from an Amsterdam hotel room about spearheading organizational efforts for nascent communities, the public/private data debate, and the art of compromise.

 

At ICANN, you saw firsthand the difficulties of getting a wide group of people to agree on ontology, processes, and goals. People in the bioinformatics industry are going through similar debates right now. Any advice for them?

DYSON: First, it helps to have something that is going to force people to compromise, because otherwise they can just argue forever. That might be someone with some statutory authority [or something else]. Unless there’s something that forces people to come to a conclusion, they won’t.

Does that mean some sort of governing body?

DYSON: It may mean something different. It may mean a governing body, it may mean something’s happening and you’ve got to make a decision that’s going to have irrevocable consequences.

It’s a real challenge. A lot of people can agree on what you should do about various kinds of genetic engineering, but unless that’s actually going to be put into practice by somebody, the people who have strong views may well not compromise. And because there’s no reality for them to deal with, they’ll just keep not compromising. You’ll never bring everything to closure.

 

In these situations, do you want to be the person who steps up to compromise or the one who holds out?

DYSON: Knowing the difference between standing up for your principles and compromising for the sake of making something work — knowing the difference and when to do which of them is of course the key. You want people who believe in principles but who are willing to learn and to be persuaded. The fact is these are hard issues and it’s not going to be easy. I think we all know that.

Are there particularly good or bad ways to set up this kind of organization?

DYSON: One bad way is in many ways [how] ICANN did it. Although the initial discussions were very public, the process seemed to become almost secret — the first board meetings were held in private. So the thing is be open and transparent and to explain who’s chosen to participate and why. They should be people who are not afraid to explain themselves in public, explain their reasons. Get a group of people who not only are geographically, culturally, socially diverse — but make sure they have diverse points of view so that no one can say, “Well, I have such-and-such point of view and that wasn’t even considered.” You [want to] faithfully and honorably represent the broadest range of views possible.

 

Should genomic data be public or private?

DYSON: That gets really complicated. It’s both. There are three issues: One is the data as inalienably personal and that belongs to the individual. Then there’s aggregated data about populations and that’s public domain — of interest to health, of interest to public welfare. Then there’s genetic information as intellectual property that might help you make a drug. They’re different kinds of data but unfortunately sometimes they’re actually the same underlying information [which] has different uses and different purposes.

The basic principles are that private data should remain private. Public health data should be used for the public good with careful control so that personally identifiable information is not released or misused. Then you get into what is closer to drug companies and patents. The patent system is moral and honorable, but a patent is a granted license with economic terms — it’s not an absolute right. It may be that some of the terms should be adjusted, especially for drugs being sold in less developed countries. That’s really where you want to have negotiation.

But expecting drug companies or biotech companies to be uniquely public-welfare minded while everybody else isn’t is both foolish and unfair — and not likely to result in good medical technology.

 

People who rely on computers for genomics research contend that the technology has to be orders of magnitude less expensive before we’ll really feel the benefits of this field. Are we going to see that?

DYSON: We probably are, depending on what they mean. You’re not going to see the cost of a personal computer going down like that, but you’re going to see power go up by an order of magnitude easily. It’s not that it’s going to get much cheaper — but what you’re going to get, in terms of power for what you pay, is going to go up dramatically.

 

You’ve expressed interest in emerging markets, including genomics and bioinformatics. What about these appeals to you?

DYSON: Like all interesting things it’s number one, intellectually challenging; two, ethically challenging and important.

 

What’s the potential for genomics?

DYSON: The potential is there for good and for harm. Almost everything we’ve done so far has not changed human nature — it’s perhaps allowed more expression of human nature or extended human capabilities — and so that to me is exciting in terms of fixing and scary in terms of messing around with what nature created. In some ways I’m anti-humanist: if something better comes along than human beings, God bless it. I’m just afraid that if we start mucking around we’re going to create something worse.

 

Have you invested in or helped out any genomics companies?

DYSON: No. I’ve done a few medical things but not in genomics, because I don’t really know that much. I’d rather put my money where I know something and can help the individuals involved, which is more in IT. It doesn’t mean I don’t think it’s important, it simply means I don’t think I bring a whole lot to the party.

 

Is there anything else you’ve learned along the way that might help those in our community?

DYSON: All the usual things: Be sensible. Learn to talk to other people. Compromise. Don’t overestimate your own importance, but don’t underestimate the importance of your task. Tell the truth.

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