Biotechnology, Liberty, and the Pursuit of Justice

An Interview with Anthony D. Romero
Executive Director
American Civil Liberties Union

by Mark Compton

Last year, Anthony Romero became just the sixth Executive Director to take the helm of the American Civil Liberties Union in the 82-year history of the organization. Ask him what sort of a course he intends to chart, and he'll quickly tell you his overarching mission is to "spark a new dialogue about the bedrock values of American democracy".

Over recent months, it's become increasingly obvious that much of that dialogue is likely to revolve around the impact science and new technologies are expected to have on the privacy rights and anti-discrimination protections most Americans have come to regard as birthrights.

"New technologies make possible the development of robust, open social conversation in which all can participate as peers, but this aspiration is rapidly dissipating," Romero explains. "The next generation of privacy protection must also shield the individual from intrusion by the government, private sector and private parties utilizing these new technologies. Along a similar vein, the ready availability of genetic information about individuals raises questions about autonomy, privacy and genetic discrimination resulting from inappropriate use of genetic data."

Here we explore some of those questions in detail.

[Mark Compton]: At a time when the government seems reflexively obsessed with the rhetoric of anti-terrorism and homeland security, discussions continue regarding the deployment of some sort of national identification card system. Surely, it's not far-fetched to imagine that Americans may someday be requested - or even required - to provide DNA samples as part of such a program. Which begs the question of how best to balance the state's obvious interest in law, order and security with the individual citizen's right to privacy. Where would you draw the line?

[Anthony D. Romero]: I think you first have to ask whether our current DNA testing procedures are even all that effective. Only after you can demonstrate that they are, in fact, reliable and beneficial can you really begin to evaluate whether the privacy rights you'll be giving up are a reasonable price, given what you're likely to get in exchange.

And how can we even consider making that decision without first engaging in an informed debate? That's the only way people can get clear not only about what they're giving up but also about why they're giving it up. We can't ask people to give up their privacy rights merely on the hope that DNA testing may someday render some societal benefit. That would be like asking people to write blank checks on their individual privacy rights.

Some of those checks may have already been cashed. In California, for example, all prisoners are currently required by law to supply blood and saliva samples. Now, under a bill working its way through the state legislature [SB1242 by Sen. James Brulte, R-Rancho Cucamonga], prison officials may soon be permitted to use "reasonable force" to take samples from recalcitrant inmates. The idea is to test these samples for possible DNA matches to evidence gathered for unsolved cases. Obviously, the assumption is that these people are natural suspects. But, by virtue of a conviction for one crime, does a person lose the presumption to innocence on other fronts?

The broader issue is how to balance the privacy rights of prisoners against society's desire to apprehend and punish those who've committed crimes - as well as to comfort those who've experienced crimes committed against them. Over the years, the ACLU has opposed numerous state efforts to impinge on the privacy rights of prisoners and convicts. And in more than 20 states, we've been defeated. So I guess you'd have to say that in this society at this particular point in time, people seem to be willing to sacrifice the privacy rights of prisoners and convicts in the name of defending victims' rights.

Well, by similar reasoning, I'd observe that statistical studies indicate that males between the ages of 18 and 22 are - as a group - the most likely to commit crimes. Does that suggest the police should also force them to surrender DNA samples?

Absolutely not! We have to make sure we adhere to the long-standing principle of innocence until proven guilty and that we also continue to insist on some demonstration of probable cause before allowing criminal investigations. And that's because the minute we replace the "probable cause" test with profiling based on background, race, religion, ethnicity or age, the civil liberties enjoyed by all of us will suffer. The ACLU has consistently battled profiling because we believe the focus should be on what people do rather than who they are.

To do otherwise would certainly put us on a slippery slope since it would seem there's no end to what can be justified in the name of patriotism once a "war" has been declared.

Yes. You could easily employ the same sort of reasoning to require all Arabs and Muslims in the country to submit to DNA sampling simply because popular sentiment holds that terrorists are more likely to come from those communities than from others. And, even apart from questions of fairness, you have to wonder whether that would even be a particularly effective approach to law enforcement. Because, in all probability, all that would end up doing is squandering our already over-taxed resources for law enforcement by simply making the haystack bigger and bigger with each passing day. And chances are that's not going to make it any easier to find the needle.

Even so, in light of the Justice Department's recent announcement that the FBI is to enjoy broader latitude in monitoring the public, is it reasonable to conclude that the authorities may someday push for the widespread screening of DNA samples?

Is it conceivable? Absolutely. It may even be probable. But the real question is whether or not it's economical. We really have to ask ourselves whether we can afford to engage in widespread surveillance and a bunch of loosely defined fishing expeditions. I think even Mayor Guiliani of New York publicly raised some similar concerns in the aftermath of the September 11th attacks.

But, of course - here at the ACLU - we're also deeply concerned that fishing expeditions based more on broad profiling characteristics than on any actual evidence of a crime could end up jeopardizing the workings of a free and open democracy. So we're strongly opposed to the use of DNA fishing expeditions just as we're opposed to fishing expeditions on the Internet, the Web, and within any other sort of community forum.

Peter Neufeld, co-founder of the Innocence Project in New York - much celebrated for its use of DNA evidence to overturn the convictions of felons languishing on death row - would seem to agree with you. He's been quoted as saying that, "As soon as you expand police power to do DNA screening beyond convicted felons and probable-cause situations, you are encouraging dragneting based on race."

Professor Neufeld is absolutely right. And that should be of tremendous concern to all of us living in a society dedicated to equality under the law, fairness and the principle of innocence until proven guilty.

And even apart from those DNA samples obtained in the course of police work, there are many others that are voluntarily supplied by donors in the hopes of furthering medical science. Just recently, in fact, it was announced that a British study of the role of nature and nurture in health and disease would begin collecting a half million blood samples from volunteers between the ages of 45 and 69. The study is backed by the government-funded Medical Research Council and the Wellcome Trust and, like most such studies, promises to be diligent about preserving donor anonymity. But given that disease studies typically compare gene expressions with medical histories and lifestyle profiles - and that we live in an Internet-powered culture where we're repeatedly reminded that information wants to be free - how likely is it that anonymity can truly be maintained?

There clearly are many broad civil liberties concerns regarding how that information might ultimately be used. Who will end up having access to it? Whom will that affect? How might we ensure that information donated for noble purposes won't be exploited for ignoble ends? How can we protect family members whose own privacy may be compromised - even though they themselves had no say in the initial decision to contribute samples? And won't the potential for abuse, the potential for misuse, and the potential for function creep just continue growing and expanding over time? These are questions we must all consider quite seriously.

Assuming anonymity can't be preserved and that information about some clearly identified individual ends up falling into the hands of an insurer or a prospective employer, what then?

There's certainly plenty of discussion currently in the medical and legal journals about the many ways in which genetic information might be used to further discrimination. Inasmuch as we have a society that's already confronted with community redlining, where banks, insurance companies and developers steer clear of certain communities as a matter of policy, the potential for abuse is quite troubling. What if insurers were able to redline on the basis of gene expressions indicating a propensity towards certain illnesses? Or towards certain behavioral tendencies?

This is especially interesting since virtually any molecular biologist will assure you there's nothing necessarily deterministic about the predilections found in gene expressions.

That may be true, but the information can be damaging all the same. And another interesting dimension to all this has to do with how shockingly easy it can be to collect DNA material. Previously, even though blood, urine or saliva samples could be collected without your consent, nothing of the sort could usually be done without your knowledge. But now, with all our recent scientific advances, genetic information can be gleaned from the hair you leave behind in a barber's chair or from the saliva used to apply a stamp to an envelope containing your insurance premium. Which means that organizations may, in fact, be compiling information - extremely personal information - about you right now without you even being aware of it.

On the other hand, to what lengths should we be prepared to enshrine privacy? Because in a society where privacy reigns supreme, what basis would there be for resolving some of the greatest controversies in medical ethics? Take reproductive genetics, for example. That's a path that leads directly to considerations of designer babies and eugenics. And yet, if absolute privacy were to hold sway, what business would it be of the government or anyone else should a couple choose to construct their own super-baby?

We certainly have to be concerned about any practice that might lead to eugenics. Because if people of means should someday have access to capabilities for altering the genetic makeup of their children such that those children are rendered immune to certain diseases or are somehow blessed with greater intelligence, what would the implications be for all those who don't have access to the same resources?

Bear in mind, though, that if the technology exists, it's likely that the wealthy will somehow manage to avail themselves of it. That's to say that history shows us that criminal laws and regulatory controls tend to apply only to those not wealthy enough to blissfully glide over all such obstacles.

Which, of course, raises a multitude of questions regarding equality, poverty and civil liberties. And all of these questions demand a full and thorough thrashing in a public forum. But unfortunately our Congress and the broader public has not as yet been engaged in the robust debate this broad set of issues clearly demands.

Any thoughts as to how the public might be brought into the debate? It's probably fair to say the government typically consigns matters of science policy to panels of worthies, industry lobbyists and the like.

Ultimately, I think the legislative and judicial processes will have to run to catch up - in much the same way the laws only began to grapple with in vitro fertilization and surrogate parenthood once people had actually started availing themselves of those options.

But regardless of when legislatures begin to act, how might they get a sense for the values and opinions of their constituents? That is, how might the public get involved in the dialogue? Is that something that can be adequately addressed just by holding public hearings?

By and large, I think the job of getting the public involved in the debate falls to educational organizations like Geneforum, to journalists, and to public interest groups like the ACLU. Because to engage the broadest possible cross-section of the American public, we have to do our best to help the general populace learn more about the issues at play, to encourage public debate, and to fight for the development of public policies intended to advance the common good.

The scramble to develop enlightened public policy may be upon us before we know it if the reports from cloning advocate Dr. Severino Antinori are to be believed. He's claimed that as many as three women participating in his program are currently carrying cloned human fetuses. If true, the debate over enhancement genetics and designer babies is likely to heat up real soon. And for the ACLU, I'd imagine that prospect raises a number of interesting issues - not the least of which might be: What to make of the assertion that "all men are created equal" in a world where at least some men and women are designed in a laboratory? What implications might that have for the bedrock democratic principles of our Republic?

Well, it's not as if at the beginning of the Republic, everyone was exactly equal. Remember that initially for the purpose of determining the size of different districts, each African-American counted only as 3/5 of a person and was denied basic civil rights until after the Civil War.

So the rhetoric used by the Founding Fathers was somewhat overblown?

Exactly. My point is that every group has had to struggle to find its place in society. And over time, protections have evolved for women, racial and ethnic minorities, and people of varying sexual orientations. In much the same way, I expect that cloning will force us to grapple with some really tough family law issues.

Given those challenges and the ACLU's long-standing mission to protect the bedrock values of American democracy, what role do you see as the organization continues to move forward?

Our mission is simple and straightforward: defend everyone's rights - all of their rights, all of the time. Which certainly encompasses questions having to do with genetic discrimination. The challenge now for us is to roll up our sleeves and really think through how to ensure the core principles we've defended for the past 82 years within a new context shaped by new technologies. And that's why over the past few months, we've launched a project on technology and liberty whereby we intend to grapple with questions of equality, fairness and privacy in an increasingly technological society. Over time, we'll deal with questions having to do with genetic discrimination, human cloning, the Human Genome Project, and the way in which biotechnologies are harnessed for purposes of surveillance. In other words, we're going to look long and hard at the broad ways in which advances in science and technology are affecting some core civil liberties issues - and the efforts we'll have to muster in order to maintain the vigor of our democratic principles.

About the Interviewer

Mark Compton monitors trends in information technology and biotechnology from a comfortable perch midway between the Silicon Valley and Oregon's Silicon Forest.