Interviews with experts

Be Careful of What You Ask For: In a fit of religious zeal, is the US giving away its economic future?

A Geneforum interview with Ronald M. Green
Chair, Dartmouth College Department of Religion
Chair, Advanced Cell Technology Ethics Advisory Board

by Mark Compton, February 2004

Among market makers and watchers, it's widely believed that the biotechnology industry may generate wealth and growth throughout the 21st century that's roughly akin to what we saw emanating out of Silicon Valley over the last two decades of the previous century. Little wonder, then, that the US, Britain, Israel and China are locked into what's sometimes described as "a horse race" to claim the prize.

Ronald M. GreenIt now appears, though, that the US is dropping back in the field - and on purpose at that. Strange as that is, what makes it truly odd is that - despite a culture that utterly hates to lose and is, in fact, renowned for its "win at all costs" ethos - the country's current Administration seems determined to drive biotechnology research away in response to organized opposition from religious leaders.

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Geneforum Interview with George Annas: Genetic Turf Wars: Whose DNA is it anyway?

An Interview with George J. Annas
Professor & Chair of the Health Law Department
Boston University School of Public Health

by Mark Compton, November 2000

Over the past decade, George Annas has come to be considered one of the nation's foremost experts on genetic privacy. That's largely because in 1995 he was the principal author of a model designed to serve as the basis for federal gene privacy legislation. Although Congress has since remained divided over the issue, the Annas model has been adopted - to greater or lesser degrees - by a number of states that have passed genetic privacy acts of their own.

George J. AnnasThe first state to take action was Oregon. But now Oregon's Genetic Privacy Act is being reviewed, largely at the urging of biotechnology industry leaders who believe the law inhibits their ability to collect the massive amounts of data required for disease association studies. Of particular interest to industry lobbyists is a clause in the statute which establishes that each individual owns his or her own DNA and thus is entitled to exercise autonomy over its use. Researchers would like to strike that clause. Annas wonders at their motivations.

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Geneforum Interview with Dr. Eric T. Juengst - Enhancement Genetics: Let the Games Begin

A Geneforum Interview with Dr. Eric T. Juengst
Professor of Medical Ethics, Oncology, and Philosophy of Science
Center for Biomedical Ethics
Case Western Reserve University

by Mark Compton

When the US National Institutes of Health first set up the National Center for Human Genome Research, concerns about the ethical dimensions of the research were so great that 5 percent of all the funds allocated to the Human Genome Project were set aside to study just those very issues. The NIH's Ethical, Legal and Social Implications Branch (ELSI, for short) was created as a result. And the first chief of that operation, from 1990 until 1994, was Dr. Eric Juengst.

Eric T. JuengstNow teaching medical ethics, oncology and the philosophy of science at the Case Western Reserve University School of Medicine, Juengst remains actively involved in efforts to set public policy. Besides serving on a steering committee that develops new initiatives for ELSI, he's also a member of the US Recombinant DNA Advisory Committee and the Federal Bureau of Investigation's DNA Advisory Board.

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Silence of the Lambs: Where have all the defenders of democracy gone?

An Interview with Dr. Benjamin R. Barber
Director of the Democracy Collaborative
University of Maryland

by Mark Compton

As smug, self-satisfied Americans continue to fatten themselves on a consumer bounty enabled in part by relentless globalization and deregulation, is it possible the free enterprise system at the root of it all may be devouring itself? And what of the democratic institutions upon which all of our most cherished liberties rest? Are they too thin to sustain our bloated appetites?

Benjamin R. BarberDr. Benjamin R. Barber, arguably the preeminent democracy theorist of our time, fears that through indolence, ignorance and general passivity, we may be putting what we value most in jeopardy. As the Director of the Democracy Collaborative, Barber has become an impassioned advocate of "strong democracy", which he contrasts with the more passive traditions of "liberal democracy"--particularly where the shaping of public policy is concerned. In his many books devoted to the subject (including most recently, A Passion for Democracy and Jihad vs. McWorld: How Globalism and Tribalism are Reshaping the World), Barber expounds on his belief that common citizens should become more involved in debating matters of great civic concern as well as the development of the policies by which they're governed.

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Geneforum Interview with Audrey Chapman: Bridge Over Troubled Waters

An Interview with Audrey R. Chapman
Director, Science and Human Rights Program
American Association for the Advancement of Science

by Mark Compton

Audrey R. ChapmanSince late in the Clinton Administration, the public debate over stem-cell research has often seemed less a dialogue than a shouting match between scientists and religious leaders. There are still some, however, who persevere in trying to keep communication channels open. And Audrey Chapman, Director of the AAAS Science and Human Rights Program, can certainly be counted as one of those.

As an ordained minister in the United Church of Christ who also happens to hold a Ph.D. in Political Science from Columbia University and serve on the staff of a major scientific organization, Chapman herself has a foot in either camp. And perhaps because of that, her extensive writings on genetics, stem-cell research and human rights strike a balance between a wide—and sometimes wildly varied—range of topics and perspectives.

Chapman's most recent book, Unprecedented Choices: Religious Ethics at the Frontiers of Genetic Science drew praise both from scientists and theologians. She also served recently as one of the lead authors of a report on stem-cell research co-published by the AAAS and The Institute for Civil Society. And later this year, she has another book scheduled for release: Designing Our Descendants: Potential and Limitations of Genetic Modifications.

[The views and opinions expressed by the participants in this interview are not necessarily those of Geneforum, and the publication of this interview should in no way be construed as an endorsement of those views.]

[Mark Compton]: Last September, in testimony before the Senate Appropriations Subcommittee on Labor, Health and Human Services, adult stem-cell researcher Dr. Curt Civin of the Johns Hopkins University School of Medicine observed: "Embryonic stem-cell research is crawling like a caterpillar. It may hold the key to expanding proven adult stem-cell therapies to many more patients, but administrative and technical barriers are impeding the progress of this vital research." How do you view that assessment?

[Audrey R. Chapman]: I'd say that's a fair assessment. Among those researchers who are particularly interested in tapping the potential of human embryonic stem cells, you'll find many who hold similar views. When President Bush first announced his policy on stem-cell research in August 2001, he indicated there were over 60 stem cell lines available, but it turns out there actually are far fewer than that. Many of the sources the President and the National Institutes of Health identified are in a very preliminary stage of development and may not even be valid human embryonic stem-cell lines. Secondly, many of the non-American sources—and the overwhelming majority of the lines President Bush identified as available come from outside this country—are quite reluctant to share their material in the US because of concerns over the possibility that the University of Wisconsin Alumni Association, which holds patents in this country on both the stem-cell research process and the products yielded by that process, might sue them for patent infringement. In fact, the estimates I've seen indicate that only between five and nine of the sources President Bush identified are actually available to scientists in this country. And there also have been delays in completing the reviews required as part of any application for federal funding. That's all gone quite slowly. So here we have a very promising area of research and a great many scientists interested in doing the work. And yet it's been very difficult to actually get any serious research initiated in laboratories throughout the country.

In amplification of your last comments, I'd like to observe that many advocates within the research and medical communities—as well as many patients' rights groups—argue that stem-cell research appears to represent our greatest hope for realizing advances in the prevention, diagnosis, and treatment of a broad range of devastating human diseases...most particularly, heart disease, cancer and various diseases of the nervous system, such as Parkinson's Disease, Alzheimer's Disease and Multiple Sclerosis. Do you consider those hopes to be well-founded? Or are they more the product of wishful thinking?

I certainly think the potential is there, but when you're at a preliminary stage of developing a technology, it's hard to know exactly what the results will be. And, by the way, I'd add diabetes to your list since juvenile diabetes is one of the few areas where it's been possible to raise substantial sums of money to fund private research. As a result, there's been a considerable effort to use embryonic stem-cell lines in an attempt to develop pancreatic-like cells capable of producing insulin.

It sounds as though you can appreciate and understand the frustration being expressed throughout the research community right now.

I can, and of course, I also recognize that we have a public policy, ostensibly, that allows federally funded research to proceed on those stem-cell lines isolated and made available prior to the President's August 2001 address. So I think another question that has to be asked is: Even if more such lines were available, would that be sufficient to allow researchers to develop these long-awaited cures? And there are numbers of scientists who say, "No."

But, as I see it, there are two major problems with the current guidelines for federal funding. The first is that the number of stem-cell lines currently available under those guidelines doesn't appear to offer sufficient diversity. Secondly, all the stem-cell lines that qualify under President Bush's policy were developed on mouse feeder layers—and that creates problems when it comes to using them in clinical trials for human therapies. There are approaches that have been developed subsequent to August 2001 that eliminate the need to use a mouse culture as a growth medium. So the more recently developed lines created with the help of those approaches aren't potentially contaminated with mouse viruses in the same way. But since they were derived after August 2001, they're ineligible for government-funded research.

In announcing those policy guidelines in August 2001, President Bush made it quite clear he didn't want the government to support the destruction of any further human embryos. That position, I take it, is one that's rooted in the religious view that human life begins at conception.

I wouldn't say "religious view." There actually is a wide diversity of viewpoints within the religious community about the moral and theological status of an early-stage embryo.

But I think we can probably agree that this particular view is rooted somewhere in the religious community.

Yes, among certain parts of the religious community.

Understood. So I wonder—at least where the question of stem-cell research is concerned—wouldn't that position tend to assign greater moral weight to the rights of the unborn than to those of the already born?

Yes, but I wouldn't even say "unborn." I find that to be a very problematic label when applied to frozen embryos in fertility clinics, which have a very, very low probability of ever being born. The embryos that are being proposed for derivation of embryonic stem-cell lines are ones that would otherwise likely be discarded. They're leftovers from couples' efforts to have children or they're of too low a quality to be implanted. The prospects that any of these would, at some subsequent date, be the basis for a pregnancy are almost nonexistent. So to even call them "potential human lives" is, I think, misleading.

I quite agree that any test that holds as absolutely sacred anything with even the slightest potential for life could only be fraught with all manner of problems and inconsistencies.

And for those who are really concerned about it, perhaps they should think about focusing their energies on regulating the fertility industry. There are already over 100,000 embryos in storage, with more likely to be created and stored.

Right. The vast preponderance of which are earmarked for disposal at some point.

Yes. Well, in Britain, in fact, there's a law that requires the destruction of any frozen embryos kept in storage longer than a few years. In the US, there don't appear to be any clear laws instructing clinics what to do. In many cases, the embryos just sit there because the fertility clinics have not been given any clear directives. And what has been suggested is that at the time couples first create the embryos, they should be offered protocols that allow them to indicate—should they end up deciding not to use some of the embryos for the purpose of starting a pregnancy—what's to be done with those leftovers. And one of the options such protocols could offer would be for donating the embryos for research purposes. But as far as I know, protocols of this type are not currently in widespread use.

I have to confess that I'm a bit confused about government policies that oppose research uses of leftover embryos from fertility clinics, but at the same time effectively turn a blind eye to the commonplace practice of discarding those very same embryos. Is that just ignorance on the part of the government? Or simply the function of a terribly convoluted moral position?

No. I think for a whole variety of reasons, legislators have been quite reluctant to even broach the topic of regulating the assisted fertility industry. And I consider that reluctance very unfortunate. As any regular reader of the news is undoubtedly already aware, there are many serious problems within that sector. We've had many instances, for example, where technologies have been introduced even though they haven't been adequately tested. As a result, humans and human reproduction are effectively being used as subjects for experimentation. And there also are all kinds of other unsavory practices that go on—which do a great disservice to those researchers who are totally honorable and moral about how they proceed on these matters. And as the assisted fertility industry continues to grow, those problems are just going to become larger and more complex.

So public health and the industry itself would probably benefit from a bit of regulatory oversight?

Definitely. Some of the current practices are chilling. For example, one fertility clinic in New Jersey has apparently taken women with mitochondrial disease or various mitochondrial deficiencies and then employed a technique that takes cytoplasm from a donor and uses it to augment the woman's own cytoplasm. By virtue of this approach, at least 30 children have apparently been born who have genetic resources derived from three sources—the mother, the father and the donor. Now, all of this has been done without first attempting careful experiments on animals to evaluate the procedure. And also bear in mind that the results are inheritable. So if these children grow up and have children of their own, they're going to be passing this genetic material—with all its unknown properties—onto generations of descendants.

Truly, this is the stuff of science fiction.

It really is the stuff of science fiction. And there are no regulations whatsoever to prevent people from doing this kind of thing.

And while we're on the subject of conflicted, inexplicable—and perhaps inexcusable—government stances, I'd like to ask about the controversy over the research uses of gonadal tissues derived from aborted fetuses. Although I understand that there are many who stand morally opposed to abortion, the fact is that there continues to be a regular and apparently unending supply of aborted fetuses. That said, why is there any opposition to utilizing stem cells derived from those fetuses for research applications? I mean, nobody seems to raise a ruckus over the use of tissues from other cadavers for research purposes.

Well, there are a number of problems with stem cells derived from aborted fetuses. First of all, you have to understand that there are two forms of aborted fetuses. Naturally aborted fetuses are aborted for a reason and that often proves to be related to abnormalities, including genetic problems. Developing embryonic stem-cell lines from an aborted fetus with irregular genetic composition would be very dangerous for future patients. Secondly, there's only a very narrow window of opportunity—of just a few days within the first eight weeks of conception—in which to obtain embryonic stem-cell lines from aborted fetuses. That means the woman would have to have the abortion in a hospital to allow the stem cells to be harvested from the fetus. Most spontaneous abortions do not take place in a clinic or hospital where the tissue could be recovered. And, in any event, the very little research that has been done with stem-cell lines from that source suggests they may be less plastic than the embryonic stem-cell lines derived from embryos that are only a few days old.

So the embryos look to be a more promising source?

Much more promising. Yes.

Bush's policies have caused some people to question the role that religious views should play in the formation of public policy—particularly in a country such as ours where the notion of a separate Church and State is central to our Constitution. In your estimation, what rights do you believe religious leaders should be free to exercise in the shaping of public policy?

I think they have a very important role to play. That may not be the answer you expected. But I am an ordained minister and I worked for the United Church of Christ national office for several years. In a country such as ours I think no single religious group should have veto power over public policy, but I believe that the wide range of religious communities should be consulted and that their voices should be heard. And then public policy should be made, taking those views into account. Right now, the religious community is one of the few sources of thoughtful, ethical viewpoints on new genetic and reproductive technologies. And they also represent concerns shared by many throughout the American population. What I find problematic is the fact that one perspective, for entirely political reasons, seems to enjoy veto power over policy. There are many groups within the religious community that are supportive of embryonic stem-cell research and do not believe that an early-stage embryo should be treated as having the same moral status as a fully formed human being.

Alright, so with reference to that veto power you say one group currently enjoys, what safeguards do you believe should be vigilantly observed so as to prevent certain religious leaders from exercising disproportionate influence?

It's not that religious leaders exercise disproportionate influence. There's just one narrow segment of the religious community that's managed to insinuate its way into political power. And, in our system, the only way to overcome that sort of thing is to try to counter that influence. I think there's just no other way. You can't start regulating who does and who doesn't participate in the political process. And when people find that they take strong issue with a particular stand, I see it as their responsibility to voice their objections and take action.

What would you see as the mechanism for that sort of expanded public involvement? We're talking about something larger than town hall meetings, I presume.

Actually, I think that would be an excellent place to start.

Any other mechanisms come to mind? Use of the Internet?

That would be a possibility, but what I think we really need is a crash effort to educate people. I would be very nervous about having a public debate based on misinformation. There are many opponents of genetic technologies who have sensationalized what they entail and have grossly misrepresented the implications of going forward with them. And this is very much in keeping with the way the abortion debate has proceeded. So I think it's important that you link public education with public discussion.

Agreed. But how best to plug public officials into the values and ideas their constituents ultimately manage to express through various forums? There seems to be quite the disconnect there, don't you think?

Well, I'm very pleased about the work that Geneforum is doing, both in terms of educating the public and informing policymakers about the core values expressed by their constituents. All of that, I think, represents an important step in the direction of trying to accomplish the sort of public involvement that's vital to the workings of a participatory democracy.

Great...and here's a topic that's certainly worthy of robust public debate: Just after this past Christmas, Dr. Brigitte Boisselier, the scientific director of Clonaid, announced the birth of what she claimed to be the first human clone. A cloud of suspicion has hung over that announcement since there's been no opportunity for independent corroboration and because Clonaid itself has the rather dubious distinction of being part of a religious sect which contends the human race was created by a group of space travelers who cloned themselves. That said, there are also some other perhaps more serious reproductive cloning efforts reportedly afoot in the labs of Italian doctor Severino Antinori and former University of Kentucky researcher Panos Zavos. All of which serves to raise a raft of questions. But first, let's just focus on the ethics of reproductive cloning itself. Your views on that?

I'm very opposed, as most people in the religious community—and, in fact, most Americans—are. When you realize the very low rate of success with all the species of animals that have been cloned to date, you begin to appreciate just how risky these efforts really are. Also, there are experts who believe that there has never been such a thing as a normal mammalian clone—even among those that have been carried through to birth and have survived. And that's because it's not only a matter of the clone having a full genetic complement. During the process of a natural union between an egg and sperm, an imprinting process is triggered by which instructions are given to the new conceptus as to which genes should be turned on and which should be turned off under certain circumstances. And we cannot replicate that process in cloning experiments.

Also, clones tend to be of a very large size in comparison to normal pregnancies, so they can be quite dangerous to the mother. That large size also seems to contribute to a low likelihood that any such pregnancy will actually survive to term. So I think it's scientifically irresponsible to be doing any human cloning at this point. Having a child be born through that process raises all kinds of moral and ethical issues. Personally, I don't think human society is ready to deal with those issues. I'm particularly concerned with the tendency cloning would have to commodify human life. It would also encourage parents to view reproduction as something that can be controlled according to design specifications of their own choosing.

So if I understand you correctly, you believe it would be scientifically irresponsible to proceed with reproductive cloning because there's so much about fundamental human biology that is not yet understood?

Yes. That's true. But even if it was understood, it couldn't be controlled. So my concerns actually have to do with both of those aspects.

OK. But with regard to understanding, wouldn't continued research on embryonic stem cells help us to gain a richer, fuller appreciation for fundamental biological processes? Isn't that the hope anyway?

Well, certainly, one of the reasons scientists want to proceed is that they believe they'll learn a great deal more about basic human biology at the early stage of life.

Another consideration is that given all the buzz these various efforts at human cloning are likely to create, what do you see as the potential implications for therapeutic cloning research programs? Are they likely to suffer collateral damage as a consequence of a furious backlash against reproductive cloning?

Yes, they almost certainly will. But I think that research would be less likely to suffer damage if we had regulatory safeguards in place to assure that therapeutic cloning cannot metamorphose into reproductive cloning.

There's a school of thought that holds that anything developed initially for therapeutic purposes can—and usually will—be put to more bastardized ends at some later point.

That's a valid sense of apprehension. So I certainly think it would be wise to put an appropriate regulatory structure in place before we proceed down the path of therapeutic cloning.

Do you feel the people in Congress and the White House currently have enough of a grasp on the distinctions between reproductive and therapeutic cloning to be able to formulate informed, balanced policy guidelines?

No. But, in any event, I think the White House is more inclined to make decisions on a political basis than a scientific basis.

What ethical distinctions would you yourself draw between reproductive cloning and therapeutic cloning?

Therapeutic cloning, of course, is never intended to result in the full development of a human being, but only to enable an early stage embryo to proceed far enough for the purposes of harvesting stem cells that can be directed to develop into a specific kind of tissue. And so the ethical issues about a child being born with any expectations of a predetermined future are not really in question. Also, there are few scientific risks. You don't have the problem of assuring that the conceptus can transit through the various stages of development to an actual birth. But some of the same ethical concerns that have been raised about reproductive cloning apply—for example, the possibility that this process will diminish our sense of the sacredness of life or accelerate the commodification of human life. Those concerns have been raised by ethicists in both the secular and religious communities in response to potential human reproductive cloning. Still, you could say the risks associated with therapeutic cloning are smaller and the benefits are potentially greater. So that would certainly tend to change the calculus.

And here's another consideration to weigh in the balance: We've already established that current US policy bars the use of public funds for much of the stem-cell research currently under way. But by leaving that research largely in private hands, aren't we ensuring that the therapeutic benefits of stem-cell research will ultimately be distributed in an inequitable fashion?

Definitely. Because private investors are going to put their money wherever they think the potential for reaping a financial reward is greatest, we may find that our current restrictions on public funding end up skewing the types of therapeutics that are ultimately developed. Also, because the tendency in the private sector will be to patent most of those therapies, providers will be free to drive up prices—which will effectively reduce the availability of any therapeutic applications.

Specifically with regard to the potential for skewing the research itself, it's long been held that pharmaceutical companies tend to drag their feet when it comes to the development of vaccines, since curing a disease almost never proves to be as profitable as treating a disease.

Right. And the other problem is that because so much of the current stem-cell research is being done in the private sector, there's likely to be a strong sense of proprietary control that may impede access to future data and stem-cell lines—which may have the effect of slowing progress across the board. In this country, we don't have a strong research exemption codified in law that would protect researcher access to the material so long as it's not used for commercial development purposes.

So the net effect, if I understand you correctly, is that we may end up retarding research as a whole, and that certain promising therapies may never be developed simply because they don't appear likely to yield obscene profits.

That's right. Also, I think you shouldn't underestimate the implications of not sharing the results of private research with others throughout the research community.

Are you optimistic that policymakers can be educated sufficiently well to allow for enlightened thinking in this area?

I think they can be educated, but I think most decisions in this area are made on political rather than scientific grounds. And that, of course, is bound to have major repercussions.

I'm inclined to think of that, actually, as little more than just the typical populist pandering for political as usual, in other words. That said, what role do you feel ordinary citizens ought to start playing in the debate?

The AAAS has strongly advocated educating people and finding ways to involve them in meaningful public discussions. We have a democratic and representative form of government. And we are making very important decisions currently on some very substantial technical and scientific matters. Unless people can become more scientifically literate and start participating on that basis in public debates, it's going to weaken our whole representative, democratic order.

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.

Interview with Insoo Hyun

11 October 2005 by telephone; interviewer Marie Godfrey

Insoo Hyun , Ph.D., is an Assistant Professor of Bioethics in the Department of Bioethics, School of Medicine, Case Western Reserve University, in Cleveland, Ohio.

Insoo Hyun, Ph.D.He received his BA and MA in philosophy from Stanford University, and his Ph.D. in philosophy from Brown University. Most of his early training in philosophy focused on ethical theory and epistemology; under the direction of his dissertation supervisor, Dan Brock, he later came to develop a predominant interest in biomedical ethics.

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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".

Anthony D. RomeroOver 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.

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Crossing the Biotech Rubicon: Plunging on beyond the Point of No Return

An Interview with Carl B. Feldbaum
Biotechnology Industry Organization (BIO)

by Mark Compton

If there's anyone who could have possibly been prepared for the tragic events of September 11, Carl Feldbaum is probably the guy. With roots that run deep into the defense and intelligence worlds, he's seen and heard much concerning matters most of us would just as soon not know about. And he's been asked to think through many different scenarios, some horrific beyond imagining.

Carl B. FeldbaumIn Mr. Feldbaum's current role as President of the Biotechnology Industry Organization, he's being asked to do a lot of thinking these days, mostly about the unthinkable. About bioterrorism, in particular. It's a topic that's on the minds of many now in Washington D.C.

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Unifying Logic: Searching for the Biggest Truths in the Smallest Elements

An Interview with Dr. Leroy Hood
President and Founder
The Institute for Systems Biology

by Mark Compton

There are stars and then there are superstars. In the life science community, Dr. Leroy Hood would certainly be counted among the latter. Besides having been among the first scientists to advocate the Human Genome Project, Dr. Hood is credited for having played a lead role in inventing automated DNA sequencers in the mid-1980s. Moreover, he has remained over the past 30 years at the forefront of efforts to shape the technology scientists use today to read, record and analyze the massive volumes of information required to fathom the secrets of life.

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