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January 29, 2011

Book Review: The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks [cover]Insightful and poignant, The Immortal Life of Henrietta Lacks takes an unflinching look at the history of the first “immortal” human cell line, the scientists involved in its discovery, the woman whose cells were used, and the impact it has since had on her family. This book not only recounts an incredible, true story but also engages the reader to consider the ethics of cell and tissue donation. Click below to read the full review.

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May 26, 2010

Are We Ready for Genetic Mug Shots?

By an overwhelming majority, the U.S. House of Representatives passed a bill last week that would provide payment incentives for states to collect genetic material — by force, if necessary — from individuals arrested for certain crimes, regardless of if they are formally charged or convicted. Declan McCullagh at CNet News explains “Katie’s Law” in-depth, and also provides a brief history of related legislation in the U.S. and the U.K.

What is apparent from McCullagh’s synopsis is that The Katie Sepich DNA Collection Act of 2010 is only the latest in a series of laws and judicial rulings that are eroding genetic privacy in the interest of law enforcement.

There is a well-established tradition in the life sciences that human subjects must voluntarily provide any of their cells that researchers wish to collect and study. Ethically, this derives from a respect for a patient’s autonomy and bodily integrity. While one could argue that convicted criminals have forfeited their right to autonomy by breaking the law, this reasoning does not apply to those merely suspected of committing a crime. If genetic privacy and bodily integrity can be disregarded for the purposes of law enforcement, the precedent is set for DNA collection to be viewed as another type of police mug shot, despite there being substantial ethical differences.

There are two related concerns that surface as our society becomes both more reliant on genetic information and more adept at using it. First, what data will be stored and for how long? And second, how do we safeguard against “genetic profiling” or other abuses?

Currently, an entry in the FBI’s national DNA database, CODIS, is only an abridged profile of a person’s genome. With genetic sequencing rapidly becoming more affordable, though, it is conceivable that in the near future CODIS may store an individual’s entire DNA sequence indefinitely. In this scenario, what if a person’s DNA revealed a genetic predisposition for violence, or showed that he or she was related to other registered offenders in the CODIS database? As a society, are we ready for “genetic mug shots” to become commonplace, or will such details encourage prejudice and corrupt justice?

July 14, 2008

Book Review: Stem Cell Century: Law and Policy for a Breakthrough Technology

Stem Cell Century (cover)Well-researched and current to the fast-moving field of stem cell research — using both embryonic and “adult” cells — Russell Korobkin navigates the complex interaction of laws, legal precedents, patents, and public policy. However, this book comes up short of its promise to adequately address the ethical concerns raised by the new field of regenerative medicine, especially in the area of embryonic stem cell research. Click on the “more” link below to read my complete review of Stem Cell Century.

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February 2, 2008

A Living Art, Part 3

The mapped pathways of neurons in a mouse's cerebellum (Wired)This is my third and final article in a series on the bioarts, a relatively new field in which artists are using living tissue and organisms to create their works. Earlier, I addressed the question, What is bioart? and also discussed some of the ethical issues with bioart in many of its current forms. Here, I briefly present my own views on the aesthetics of bioart. Aesthetics examines what makes something possess certain perceptible qualities to humans (such as beauty, ugliness, humor, tragedy, etc.) and it explores why we value things (man-made or otherwise) that have these characteristics.

A Vision for Bioaesthetics

I believe that the arts are crucial for society. They reflect/reinforce our values and give a forum for asking difficult questions, including ones that challenge cultural norms. The problem is not when taboo questions are asked but rather when artists choose to override basic ethical principles in making their statements. For instance, I could not respect the artistry of a movie that intentionally harmed animals during its filming, even if the director believed it was the “best way” to ensure that the drama was believable.

Along these lines, I have been disappointed with the works produced to date by most bioartists. On the one hand, some have created mesmerizing images through mapping biological processes, such as the activity of neurons in a mouse’s brain (pictured above). These works are fascinating to look at, but offer no philosophical substance or social commentary, apart from showing us the state of current technology. At the other extreme is the macabre works of artists-turned-biotechnologists like Oron Catts, who for a recent exhibition made a steak from artificially grown frog muscle cells, chewed it up, and then spit out the remnants for use in a later work.

Both categories of bioart strike me as circus acts: they only manage to dazzle or to offend their audiences. It seems that novelty and entertainment are the purpose – and all at the expense of a great deal of life. This debate has gone on for some time in the art world: whether art is “good” when it is (merely) new or daring, or if art is only truly “good” if it is ethical in its creation and, ultimately, genuine in portraying the inner life of the artist in some way. I argue for the latter perspective, and take issue with the ethically questionable practices that I have seen in many recent bioart works.

What I hope is that bioart will become a lens by which to examine our increasingly biotechnological society more clearly. Generally speaking, our art and our technology reveal who we are; illuminating this reality should be at the core of a bioart that is both daring in its vision and thoroughly ethical in its implementation.

If, for example, artists are disturbed by the dangerous rhetoric that pharmaceutical companies employ sometimes to convince would-be consumers that they need the latest medical “cure,” these artists should create works that bring attention to the tenuous psycho-somatic relationship that exists between legitimate disease and mere dis-ease with our bodies. Similarly, as more and more technological pundits insinuate that we are nothing but biological machines, bioartists should be at the forefront of challenging such a shallow understanding of human nature.

As I mentioned in my last article, art must continuously change and adapt to remain relevant to its culture. But, as Carol Gigliotti has argued elsewhere, the destructive and divisive works to date from most bioartists do nothing to transcend the ethical challenges that we face in using technology. Rather than diving headfirst into experiments that highlight the very practices they hope to decry, bioartists should raise awareness of these important issues, and do so in ways that respect life in all of its complexity and beauty.

January 27, 2008

A Living Art, Part 2

Stelarc shows a model ear on his forearmThis is the second posting on the bioarts, a relatively new field in which artists are using living tissue and organisms to create their works. I offered a glimpse into the world of bioart in my previous article, and will now look at some of the ethical issues at stake before turning to my own vision for bioaesthetics.

The Ethics of Bioart

Art, like any aspect of society, must continually change or risk becoming stagnant and irrelevant to its culture. This is true of all art forms, whether bioarts or more “conventional” ones like film, sculpture, and literature. These days, though, it seems that artists particularly enjoy pushing out the frontiers of their mediums in order to arrest their audiences (and to make a name for themselves in the art world).

Along these lines, the mantra that I think describes bioartists best is “the sky is the limit.” Mouse cells employed to create a tiny jacket? Sure! Graft a living ear onto a person’s forearm? Why not? It seems that bioartists at this point are more interested in the novelty of their experiments than in conveying any meaningful content – or ascribing to any ethical standards in their practices.

While the various grotesques that are emerging from bioartists’ workshops may be created and destroyed at will, the artists themselves declare that they are against the abuse of our environment and its living species for the sake of profit. Carol Gigliotti, an art educator and media theorist, has done an excellent job of highlighting the contradictions in this approach, which she summarized in a phone interview with NPR:

I feel like [bio]artists at this point are mirroring what’s happening. I don’t feel they are encouraging shifts to new levels of consciousness.

Furthermore, significant ethical boundaries are crossed when artists start turning animals and even humans into works of art. Like using people’s foreheads to advertise products, these bioartists treat their subjects like living billboards for their ideas. And bioartists go well beyond the skin-deep transformations of tattoo artists: many create their works by invoking dramatic surgical and genetic changes in their subjects. It is not only presumptuous but also ethically repugnant for bioartists to consider their legacy and “right to expression” so important that they feel free to conscript other living creatures for their art experiments.

So, what should characterize good bioart, and what does artistic and ethical integrity look like in a world where there are few practical limits to the ways that life can be altered through biotechnology? These important questions are at the start of bioaesthetics, which I will discuss further in my next posting.

January 19, 2008

A Living Art, Part 1

Picture of a miniature ear (NPR)This is the first posting of a series on the bioarts, a relatively new field in which artists are using living tissue and organisms to create their works. This article addresses the question, What is Bioart? In future postings I will reflect on the ethics of bioart and offer a vision for bioaesthetics.

What is Bioart?

Are you ready for animal body parts to become the canvases (and living paint) for the works that you see in museums and art shows? How about using your own body in this way? NPR recently covered the emerging field of bioart, through which artists are pushing the boundaries of what is considered conventional – and ethical – in realizing their aesthetic visions.

NPR reviews the developments in one arena of the bioarts: living cells, tissues, and the occasional animal that have been engineered to embody an artist’s vision. Examples include a miniature ear (pictured above) created with human skin cells grown in a micro-gravity bioreactor, and a rabbit genetically engineered to glow green in blue light. More ambitious artists are hoping to make the human body their canvas through various biotechnologies, such as Stelarc’s project to surgically attach a living ear to his own forearm.

Beyond the surprise that these “flesh sculptures” elicit from most audiences, what’s remarkable to me is how versatile and resilient living organisms are to human manipulation. Mix jellyfish genetic material with rabbit embryos and – voila! – a fluorescent bunny is born. The question emerges: will it be much more difficult to use humans (volunteers or otherwise) in the next phase of bioart? And is it ethically appropriate to do so? I will address the ethics of bioart in my next article on this topic.

November 20, 2007

Decoding Your Genome: Helpful Insights or Pandora’s Box?

A new biotech company, 23andMe.com, has opened its doors in Silicon Valley. 23andMe offers a genetic profiling service to anyone willing to pay the $999 lab fee and provide a sample of cells from their saliva (much like many of us have done in high school biology class). One of several startups entering the personal DNA market, the company aims to help people better understand the 23 chromosomes in every cell of their bodies, including the ability to explore your genes through a secure, interactive website.

Of the 10 million or so individual nucleotides (SNPs) that vary from person to person in the human genome, 23andMe claims to identify about 600,000 (6%) of them with at least 99% accuracy. While this means you would only learn about a fraction of your entire genome, there is still a great deal of information that can be gleaned. This includes insights into your ancestry, physical traits, and susceptibility to certain diseases.

23andMe provides would-be customers with some things to consider before sending in their cell sample. At the top of this list: “You may learn surprising things about yourself.” They also mention that their laboratory process may produce errors, and caution that “genetics is not destiny.”

While competent adults can and should weigh the pros and cons before signing up, several important questions come to mind. For one, how many people will be able to maintain a critical eye toward the results, as 23andMe recommends, especially if a life-altering disease is shown to be likely in their future? I have doubts that America is ready–both socially and legislatively–for such profound information to be available to the average citizen. Can we take such knowledge with a grain of salt, and not treat ourselves or others as “defective” if something surprising does show up?

In addition, only a few states prohibit genetic discrimination today, so sharing with a healthcare provider that you have an increased risk for a heritable disease could lead to the denial of your health insurance coverage. And while 23andMe assures users that they take many security precautions, by making this information available through the Internet it is never completely secure.

I don’t expect personal DNA sites like 23andMe to open a Pandora’s Box for most people, and it may prove to be a valuable, educational tool for many. But I am concerned that some will jump to conclusions–or be subjected to prejudices–that are not warranted from the results. Can we handle such intimate knowledge responsibly, especially since we are (currently) powerless to change what we find?

August 18, 2007

Chess, Computers, and the Human Element

Ten years since the highly publicized chess match between Gary Kasparov and the Deep Blue supercomputer, Daniel Dennett from Tufts University reflects on the significance and legacy of Deep Blue’s win in “Higher Games,” a recommended read in MIT’s latest Technology Review.

Dennett recalls that at the time, many wondered if Deep Blue’s accomplishment (or rather, the accomplishment of its designers) signaled the end of humans as the dominant thinkers on this planet. Yet ten years after Deep Blue–and despite Moore’s Law holding steady all this time–computers are still the ones being programmed by humans, and not the other way around. What seems obvious to me is that computers rely entirely on us to give them the wherewithal to accomplish any task, however large or small. This is one of the many shortcomings of artificial intelligences, a few of which Dennett acknowledges:

Computers–at least currently existing computers–can’t be bored or embarrassed, or anxious about losing the respect of the other players, and these are aspects of life that human competitors always have to contend with, and sometimes even exploit, in their games. . . . The imperviousness of computers to this sort of gamesmanship means that if you beat them at all, you have to beat them fair and square–and isn’t that just what ­Kasparov and Kramnik were unable to do?

What I found interesting about this “fair and square” comment is that it treats chess as a series of statistically weighted moves and counter-moves on a board, which is not what most people find interesting about the game. “Gamesmanship,” as Dennett calls it, is crucial to chess matches or any other competitive activity, at least when humans are involved. In fact, playing a nonhuman opponent forced Kasparov to act as a computer (merely) choosing among strategies that fell within the fair rules of play. Make a computer that can play chess as a human plays, though, and you will have accomplished something that no one has ever done: turning Pinocchio into a real boy.

In light of these considerations, I take issue with Dennett’s assertion in this article that humans are “protein machines” in the same way that present-day computers are silicon machines. According to him, we should embrace this idea simply because no other metaphor explains the process of human thinking quite as well. The gap here in Dennett’s logic is a mile wide: a good metaphor may help us understand reality, but we would be remiss to confuse a puppet with a person. We do not merely run through algorithms when making decisions; we emote, intuit, and even pray. We have a first-person experience of the world that cannot be formalized into finite mathematics and logic gates without losing the most important element of all, namely, subjectivity itself.

I think that the story of Kasparov vs. Deep Blue can serve as a mirror for our own assumptions: If we believe humans are only biological mechanisms, then Deep Blue bested the best chess-playing machine in the human race, fair and square. But if we were expecting a supercomputer to compete as a fellow human chess master would–with all of the gamesmanship that goes beyond the rules–we will be disappointed in Deep Blue and its programmers. Those like Dennett who believe computers can surpass us in chess (or any other human pursuit) miss why we play in the first place.

September 27, 2006

Egg Donation: Questions & Answers

On a recent business trip, I ran across an ad announcing “immediate availability” of donated eggs that a “sophisticated” couple could purchase for in-vitro fertilization. Meanwhile, USA Today has uncovered that some young women are paying their way through college by selling their eggs to fertility clinics like the one featured in my in-flight magazine.

Commercialized egg donation raises a number of serious ethical issues. Read on for a Q&A about this important – and controversial – subject.

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September 21, 2006

Bioethics and the Sudan

Though most issues in bioethics focus on the edges of the human life span – the very young and the very old – it is equally important to stress our respect for the dignity of all regardless of factors like gender, age, race, intelligence, religion, or location in this world.

This week at the United Nations, all eyes are on Darfur, a region in the Sudan where as many as 400,000 people have been killed and 2 million displaced by military forces and militia groups supported (or, at least, not stopped) by the Sudanese government. Many have called the killings an act of genocide against the non-Arabs living in western Sudan. Until recently, however, few have brought attention to this three-year-old crisis.

The killing and torturing happening in Darfur are crimes against humanity, mostly targeting innocent civilians. Bioethicists and anyone else concerned about defending human life should respond. I encourage you to call or write your national leaders and challenge them to take action.

August 30, 2006

Forget Accurate Reports of New Discoveries on Memory

A trio of articles this week on how the brain may form and maintain memories in the journal Science has led certain news outlets to jump to conclusions about the nature of the human brain and our present ability to manipulate it.

For example, PhysOrg.com is announcing that scientists have found the “memory molecule,” and these studies demonstrate that we “can erase long-term memories . . . that had been stored for one day, or even one month . . . as you might erase a computer disc.” The article neglects to mention, however, that the studies only involved rats, not humans, and were therefore limited to the rats’ abilities to remember spatial relations (such as learning to avoid a painful shock).

Since a rat cannot communicate to researchers what it does or doesn’t remember from yesterday or last month, evidence that memories can be selectively erased is, at best, inconclusive and circumstantial. These articles in Science only show that (1) rats use a certain area of their brains (the hippocampus) to remember spatial information, and (2) inhibiting a critical enzyme in this region can destroy these learned relations. We know that humans also use their hippocampi in similar ways, though it remains to be seen what this inhibitor would do to our own memories – spatial or otherwise.

Meanwhile, claims about turning our brains into selectively re-writable media through biotechnology are mere speculation. Considering Mayo Clinic found in 2003 that 1 in every 5 news articles on neurological conditions misrepresent or exaggerate the studies they cite, such hyperbole probably shouldn’t come as a surprise. While these discoveries do open up the possibility of a real Lacuna Inc. someday, much more research – and ethical debate – will need to take place before then.

Update on 8/31 by Eric Spaulding: For anyone interested, I just found this article from The Scientist which explains the importance of these discoveries without all the hype.

August 23, 2006

Booting the Latest Brain = Computer Idea

LiveScience is reporting that neuroscientists have found that our brains boot “like a computer” as we rouse from sleep. While the article is sparse on details, I suspect brains require much more than “puffs of nitric oxide” to even begin our return to consciousness. No word on how the thalamus solves the bootstrapping paradox, either.

Technicalities aside, what strikes me here is that scientists are stretching the brain/computer simile to the breaking point. Granted, the brain has been compared throughout history to devices like clocks and pipe organs, which were the most advanced technologies of their day. Perhaps this is just another attempt to make neurology more accessible to the public. (This is brain science, after all!) Yet because of their complexity few people understand how computers work any better than they understand neuroscience, so this analogy isn’t particularly helpful.

What it does help to do, though, is encourage readers to take the brain-as-computer metaphor literally. Notice that this article depicts the thalamus as acting on its own, determining what sensory information to let in regardless of the person’s intentions. If the brain is merely an information processing unit (as some computer scientists have claimed) then this makes sense. The thalamus picks among sensory inputs so that my brain can understand its surroundings, not me. By shifting analogy to reality, we are led to believe that we’re only biological machines operating by the laws of physics; mind does not matter.

This trend is both disturbing and, at a fundamental level, dehumanizing. If I have no choice over what my brain does, “I” am not responsible for my actions, whether good or bad. From this viewpoint, how can “good” and “bad” have meaning at all? Science seeks to describe the natural world as simply as possible. Scientists overstep their bounds, though, when they try to simplify human imagination, morality, and intentionality to biochemistry in a paltry attempt to explain (away) everything. We would do well to jettison this nonsense of equating ourselves to computers, as it is only a small semantic step from making us all robots.

August 15, 2006

Two Views on the Genetic Screening of Embryos

BusinessWeek recently ran two commentaries on a genetic test known as pre-implantation genetic haplotyping, or PGH. This new method will enable fertility clinics to quickly detect over 6,000 genetic disorders when screening for healthy embryos created in-vitro.

The first article, “Confessions of a ‘Genetic Outlaw’,” predicts that techniques like PGH will increasingly pressure parents to prevent “defective” children from coming into the world. The counterpoint, “New Hope for Families with Genetic Risk,” argues that couples with a history of genetic disease, such as cystic fibrosis, should be able to ensure that their children are not also affected.

With about 1% of the babies born in the U.S. and over 4% in some European countries now conceived in-vitro, will this ability to exact “quality control” over the next generation change the relationship between parents and children? How can we avoid the slippery slope toward a culture of eugenics, where being welcomed as a member of the human family is contingent on being “perfect”?

August 8, 2006

All’s Fair in Love and Sport

In the wake of Floyd Landis’ positive test results for synthetic testosterone doping, The Onion.com – a popular adult news parody site – is running a special report: “Your Favorite Player Took Steroids.” They also lampoon the beleaguered Tour de France cyclist with a “Cheat to Win” yellow wristband.

Whether you believe Landis cheated or not, The Onion’s report pokes at the fact that chemical enhancement has and will continue to be a problem in the sports arena. If the aim of sport is primarily entertainment, why not permit athletes to use whatever performance-boosting drugs they want in order to win?

The problem, of course, is that there is no limit to what human imagination can conceive to push the performance envelope.

If sport is more importantly about personal discipline and fair competition, these would be undermined in a doping “arms race.” In their report, Beyond Therapy: Biotechnology and the Pursuit of Happiness, the President’s Council on Bioethics makes an important point when they opine, “There seems to be something dehumanizing in coming to rely so heavily on one’s chemist to excel, to the point where one might wonder whether such excellence is still ‘personal’ at all.”

 

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