Bioethicist: Privacy a worry in genomic research

In "The Death of Aging," Fault Lines looks at what happens when for-profit companies set their sights on helping humans live healthier, longer. The film airs on Monday, May 11, at 10 pm Eastern time/7 pm Pacific on Al Jazeera America. | Click here to find Al Jazeera in your area.

There’s a new push in the sciences to take aim at a familiar foe: aging. The opponent of course is not novel—scientific and medical research have tried to push the boundaries of human lifespan for decades, if not centuries. But emerging technologies and unexpected benefactors are aligning to try to reconceive aging to extend the period when people are healthy deeper into our lives—and maybe extends those a bit, as well.

Perhaps the highest profile entrant into the longevity arena is Google, which in September 2013 officially launched its California Life Company, or Calico, to understand and tackle aging. More recently, biotech entrepreneur Craig Venter co-founded Human Longevity, Inc., to gather terabytes of data on individuals from their genomes to the bacteria living in their guts to their electronic health records to be able to make better predictions about what sort of illnesses might lie in a person’s future and what therapies might eliminate them. Even the government is getting in on the action with the newly announced Precision Medicine Initiative, which is hoping to enroll 1 million people in a study to investigate their medical records, DNA and even have them don wearable sensors to track health signals all in an effort to understand how chronic diseases take hold.

Christopher Thomas Scott, a bioethicist at the Stanford University School of Medicine, noticed the pattern and earlier this year co-wrote a comprehensive piece in the journal Nature Biotechnology cataloging some of the research efforts, both by private companies and academic institutions. “The idea is to compress the infirmities of old age into a short period at the end of life—thereby increasing ‘health span,’” he writes along Nature Biotechnology Senior Editor Laura DeFrancesco. “The benefit: good health staying with us longer into old age; in essence, living long and living well.”

Fault Lines spoke to Scott about this new search to extend healthy life, as well as some of the consequences of this type of research. An edited version of the conversation follows:

Fault Lines: Can you give us a sense of where we are in longevity research?

Scott: I would say longevity research is the new view of anti-aging research. So in the ‘90s, there was a single gene approach to aging—whether we could find that gene that allows us to live to 100. That didn’t pan out.

So the most recent effort by scientists and companies and universities is a more subtle and, I think, more complex approach. We’re not going to see if we’re going to live to 100 or 120. What we’re going to try to do is live the best we can, the healthiest we can, up until we die. So that’s where longevity research is much more different in my mind. So it’s about health span. How healthy we live until our old age so that we don’t spend those last few years suffering with many of the diseases that afflict us with aging.

That seems like the general goal of modern medicine for the last 100 years. What’s really different now?

That’s a good question because there are several things that are different about this version of the medical impetus for longevity research. One is big data. So it’s not just about a single gene, it’s about multiple genes. In fact, diseases of aging usually get us because there are many of them, not just one of them. So we die from a lot of them—cancer, heart disease, dementia.

The idea behind longevity research, at least as I understand it, is they are going to put together information from a variety of sources: the proteome (the proteins that we make), our genes (the genome), the medical data that we get from our doctors and maybe even the data we supply ourselves as we become citizens that want to report on our own medical well-being to doctors and other providers.

It seems there is a tipping point not because of approach but because of the players that are getting involved.

Exactly. These are big names in the sciences—where you have Craig Venter, Lee Hood, any of the scientists at Stanford—they all seem to be converging on this idea of longevity. And that to me that seems to be a pretty interesting phenomenon.

Usually when you have new fields where you have someone out there by themselves, shouting, “We need to go here!” But there seems to be a group of very high powered, very knowledgeable, smart individuals with a lot of money behind this idea. And it reminds me a lot of where we were with stem cells about 15 years ago. Same sort of thing except I think there’s a bit more corporate money behind this, which is an interesting twist.

And Google has launched Calico to try to defeat aging. So a lot of big players in tech, like Google and Stanford, and tech entrepreneurs are getting involved. If technology is a belief system, is Stanford The Vatican?

Silicon Valley may be The Vatican. This is an interesting place for this to happen because you have the Long Now Foundation here, you have the Singularity Movement that’s based here, you have the hard scientists, you’ve got the SENS Foundation.

Everybody seems to be talking about this, and behind it you have millions and millions of people like me that have hit the 60-year-old mark and are wondering, “Well, what are the next 15 to 20 years going to look like for me.” And we also—people of my age, the boomer generation—have parents who are at the 80-year-old mark, where you could imagine some of these things in the future really helping. So I think there’s a resonance with the baby boomers, there’s a resonance with the aging family of boomers and you have that with some really exciting science.

I think the quality of life in these last 20 years [between 60 and 80] is what researchers are focusing on. We have an increasing age span now and it probably will increase the next decade or so. So what are we going to do in those last years to eliminate or reduce the suffering that comes along with aging? I think that’s an admirable goal for this research to be looking at.

That’s interesting because this work gets a lot of headlines that are fairly sensational—living 10,000 years and immortality—but there’s really a kernel of reducing the suffering in the way we live now. That seems to be the most important thing that could come out of this, or the most realistic thing.

The fact that we might have a society which achieves this singular moment in the future where we’re all happy and living well based on technology. That’s a little far-fetched. Maybe even a lot far-fetched.

I think where the hard science is going is this business of tackling these diseases one at a time through this research. And as longevity or anti-aging researchers will tell you, we no longer just die from one disease. We die from a collection of them. And we don’t want a medicine that simply goes down the road where we’re just substituting one disease for another disease that will kill us. Right? So you can put in a stent, we take care of the cardiovascular disease, but the Alzheimer’s will get you.

So it’s this collection of things and how they interact and how all the data come together to perhaps provide a protective effect for those long-lived humans that we know that seem to dodge those. So that’s a component of this research—studying the very, very old and asking why they seem to be so old and healthy at the same time?

You mentioned stem cells a moment ago. That became such a political issue and battle. Does this have a political component?

So the stem cell research launch, if you want to call it that, was heavily laden with the politics of beginning of life and using embryos for research. I think we’ve largely moved beyond that in stem cells. I think we’ve kind of hit the flightpath there.

This is different. I think the research is largely non-controversial. I think it’s necessary and important. I think things from the ethical point of view will be the hype that’s attached to it. The specific types of therapies that comes from this research may have specific ethical conundrums that we may need to address and think about.

So it’s massive sets of data. Whether it’s personal health data or genomic data, you now have a resource that can be monetized. So you say, “I have 300,000 genomes at company A, would you like the subset of genomes that are advanced Alzheimer’s disease because you guys are an advanced Alzheimer’s company?” And they would say, “Yes, we will sign a $100 million deal.” So all of a sudden that data for which the person has given the sample is now being used by another company. That company might do deals with other smaller companies. And so on and so on.

So it gets quite thorny for where this data—even though it may be de-identified and even anonymous —where that data goes and how it’s used. And I’m just not convinced that we’re there yet, where we have the safeguards and the thresholds in place so that the people who give the data know where it’s going to go and how it’s going to be used.

If life extension therapies come out of private ventures, who has access to it and what does that mean ethically for society? Is it a way to increase the lifespan of the rich? Does it have much to do with the lifespan of those in Africa or the southside of Chicago?

You can ask that question about pretty much any biotechnology in the developed world. The argument for doing the research goes the following way: Though we might be studying a disease of, say, old, white Americans—say prostate cancer—and there’s money behind that, what will fall out of that study will lead to other studies of cancers that might afflict everybody. So that can be a compelling way to say, “OK, we will commit this money.”

But from an ethics point of view, that raises a question of whether or not there’s a just distribution of resources and whether we ought to commit billions of dollars to that when we’re facing so much other heartache in healthcare. And my answer there is that we just don’t know. And that science often gets on these big tracks of ideas. The Human Genome Project was one of them. The stem cell was another one. Before that, gene therapy was another thing that captured our imagination. And those things may not have yielded everything that was hyped to be—and even the rich, privileged older Americans didn’t get the therapies that were promised.

The discoveries that came out of that though have formed the platforms for innumerable other things. So genomics is longevity research, we talked about that. Cell biology is all of the cell processes of aging, that’s going to be a huge increase in knowledge. So I see the increase of knowledge for human health as the big benefit. That’s the benefit that I look at.

When it comes to cures and treatments, I’m a scientist by training, and I know it takes a long time and 90 percent of it never works out. So let’s do the projects that capture our imaginations. Let’s try to get that 10 percent. And let’s try to apply those to as many as people as we can.