Category: Bioethics

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Health care systems kill people. So what?

As the debate over health care reform slogs on, a particular kind of argument has become quite familiar.  It goes something like this:

Health care system X is a bad system because it kills people.

In support of this assertion, we are then treated to a set of anecdotes about how this or that person died as a result of this or that health care system break down.  Hence, we see critics of Obama’s proposals trotting out horror stories about how NHS bureaucracy resulted in the death of this or that Briton’s loved ones.  Likewise, we see supporters of health care reform unearthing heartbreaking stories of how the American patchwork of private insurance and Medicare or Medicaid killed off dad or mom.  My question is, “So what?” Read More

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Health Tech: CNET Shadows The Economist

507px-gersdorff_-_schadelwundeTeaching Information Privacy is simply fantastic. The law and issues force students to consider torts, contracts, criminal procedure, constitutional law, and more. The health and genetic privacy material alone could easily be a course unto itself. Health care has been a major policy matter for more than a decade, and yet, it has not suffered the usual let’s move on to the next hot topic pattern that specific health matters such as HIV/AIDS and more recently H1N1. One area that is coming is so-called e-health. CNET is hosting a three day series on “Your e-health future.” The series looks at digital health records, Microsoft and Google’s forays into the sector, some fundamentals about e-health, stimulus, and so on. I plan on reading the different parts but based on the bits I’ve scanned, it is a little thin. In contrast, The Economist’s special report “Medicine Goes Digital” from April was stimulating and informative. I highly recommend the series of articles. The basic premise, “The convergence of biology and engineering is turning health care into an information industry,” relates to something I have been working on for a while: the way in which the merging of humans and machines (some call this possibility the singularity) poses problems that relate to intellectual property and privacy in much the same way being online did and continues to pose problems. These changes are coming. The question, and my hope, is that for once the law will be ahead of the curve as technology foments a fundamental change in the way we live.

Image: “Fieldbook of medicine (1517). Treatment of a skull injury. Wood cut work attributed to Hans Wechtlin.”
Source: Wikicommons

License: Public Domain

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What’s in a Name, Part 2: Consider “half-siblings”

Ryan Kramer graduated from Colorado University’s aerospace engineering program on Friday, a program that is so tough that only about 50% of those who begin ultimately finish it.  Before he starts his master’s degree in engineering management  at USC this fall, one of his big summer plans is to meet two of his half-siblings; he has at least five others.

I’ve met Ryan once, and was incredibly impressed with him – I’m not surprised that he was able to complete his competitive college program nor that he is seeking out half-siblings and the man who anonymously provided the sperm that enabled Ryan to exist.  Ryan and I met at a conference on establishing a national donor gamete databank. Ryan and his mother, Wendy Kramer, have started the enormously successful Donor Sibling Registry, which is now responsible for connecting more than 6000 people with others who share some of the same genetic origins (disclosure: I have just become a board member of the DSR).

Donor-conceived offspring often – although not always – regret their lack of connection with their entire biological heritage. They want to know more about the often anonymous individual[s] who helped create them. As the secrecy around using “donor” sperm and eggs dissolves – in the past, parents frequently did not tell their children that they had been created by donor gametes — offspring and their parents are increasingly trying to get additional information and are advocating for disclosure of “donor” identities. Many have begun to use the internet to create an extended family that includes others who have used the same donor. Almost 150,000 people visited the DSR website in 2008, and more than 24,000 people have registered on it. It maintains an extremely active blog and message group.

The language in the donor world shows how these families are constructed. Offspring who share the same donor are typically labelled “half-siblings.  “Accidental incest” is a concern.   The word “donor” is itself a misnomer; gametes are typically sold rather than provided altrustically.   Read More

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What’s in a Name? Consider “Embryos”

Dan first asked me to blog a few months ago, around the time my book, Test Tube Families: Why the Fertility Market Needs Legal Regulation, was hitting the market. Since then, we’ve had Nadya Suleman’s octuplets, President Obama’s lifting of the federal stem cell research ban (although this may only apply to embryos resulting from fertility efforts), and proposed new legislation in Georgia that would allow for embryos to be “adopted.” These events in reproductive technology are neither as newsworthy nor as profoundly disturbing as the torture memos or bailing out Wall Street — or, potentially, as swine flu. They are, nonetheless, critical to the cultural conflict over abortion, family formation, and gender roles.

Consider the proposed Georgia law, and almost copycat-like, legislation in Tennesse. The “Option of Adoption Act” is a Georgia bill that is now sitting on the desk of Ga.. Governor Sonny Perdue. This is the same Republican governor who filed his own brief in Northwest Austin Municipal Utility District v. Holder (the Voting Rights Case that the Supreme Court heard last week), arguing – among other things — that electing a black president indicates no further need for the type of scrutiny Georgia receives under Section 5; the Georgia attorney general had, apparently, refused to file such a brief. Anyway, the Option of Adoption Act, which was introduced in the Georgia legislature by an anti-abortion state representative, sets out methods through which people who create an embryo (when someone undergoes a cycle of in vitro fertilization, there are often embryos left over that ) can donate any leftovers to someone else. There may be up to half a million frozen embryos in the United States, although many of them are incapable of becoming viable fetuses. In Georgia, if the legislation becomes law, the recipients of any embryo transfer can then choose to petition a court for recognition that they are the legal parents of any child born to them.

.One of the bill’s advocates, Daniel Becker, the President of Georgia Right to Life, trumpeted that, “’This bill is monumental in that it establishes the adoption of embryos as children for adoption purposes.’” Indeed, there have even been claims that an embryo exchange should be the basis for eligibility under the federal adoption tax credit. As Sarah Lawsky and I painstaking show in Embryo Exchanges and Adoption Tax Credits, use of someone else’s embryo is not an adoption. Calling embryos “children” is problematic for a number of reasons.

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Neurocosmetics as Faulty Data

Edge, a fascinating online salon/magazine, asked 151 luminaries “What Will Change Everything“? I’ve picked through the 107,000 words of responses over the past few weeks; many are thought-provoking.

For example, Marcel Kinsborne predicts a growing market for “neurocosmetics” which translate the benefits of cosmetic surgery to the social world:

[D]eep brain stimulation will be used to modify personality so as to optimize professional and social opportunity, within my lifetime. Ethicists will deplore this, and so they should. But it will happen nonetheless, and it will change how humans experience the world and how they relate to each other in as yet unimagined ways. . . . We read so much into a face — but what if it is not the person’s “real” face? Does anyone care, or even remember the previous appearance? So it will be with neurocosmetics.

Consider an arms race in affability, a competition based not on concealing real feelings, but on feelings engineered to be real. Consider a society of homogenized good will, making regular visits to [a] provider who advertises superior electrode placement? Switching a personality on and then off, when it becomes boring? . . .

We take ourselves to be durable minds in stable bodies. But this reassuring self-concept will turn out to be yet another of our so human egocentric delusions. Do we, strictly speaking, own stable identities? When it sinks in that the continuity of our experience of the world and our self is at the whim of an electrical current, then our fantasies of permanence will have yielded to the reality of our fragile and ephemeral identities.

It’s one thing to read these imaginings in the fiction of a Houllebecq, Franzen, or Foster Wallace; it’s quite another to see them predicted by a Professor of Psychology at the New School for Social Research. I have also predicted an arms race in the use of personality optimizing drugs, but I believe such an arms race would defeat, rather than reveal, humanity’s true nature. My difference with Kinsborne suggests a technophilic bias at the heart of Edge’s inquiry: an implicit belief that certain technologies will inevitably change us, rather than being changed or stopped by us.

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Towards Responsible Use of Cognition-Dulling Drugs

In a recent editorial in Nature entitled Towards responsible use of cognitive-enhancing drugs by the healthy, distinguished contributors have endorsed a “presumption that mentally competent adults should be able to engage in cognitive enhancement using drugs.” Against various Luddites who worry about the rat races such drug use could spark, the editorialists argue that cognitive enhancement is here to stay: “From assembly line workers to surgeons, many different kinds of employee may benefit from enhancement and want access to it, yet they may also need protection from the pressure to enhance.” Instead of the regulation encouraged by Francis Fukuyama, they would have us rely on robust professional standards to guide “appropriate prescribing of cognitive enhancers.”

The most promising aspect of the editorial is the thin and unspecified concept of enhancement that it endorses. As Carl Elliott notes, relentless focus on well-defined tasks can offer a real competitive edge in today’s economy:

Employees who cannot rely on job security often feel as if they are constantly required to prove their value to their employers. Many of these same employees spend most of their time sitting in front of a computer screen performing repetitive tasks that require sustained attention and concentration.

Of course, many in this group may experience moments of imagination or reverie positively, as exemplary thought rather than distracting consolation. For those individuals, the next goal of an autonomy-enhancing bioethics should be the development and widespread use of cognition-dulling drugs, which serve to blot out all awareness except of the task at hand. Cures for resentment, envy, or union-organizing may also serve to enhance workplace efficiency.

Bioconservatives may fear that cognition-dulling drugs presage a Brave New World–particularly Aldous Huxley’s futuristic vision of certain fetuses being routinely exposed to alcohol in order to ease their acceptance of low-caste membership. They tend to forget Huxley’s counter-image of a progressively technologized paradise, in Island, which “answers the authoritarian monoculture of Brave New World point by point”:

Biotechnology is present, but as a kind of ecologically wise agricultural system. . . . The nuclear family has been abolished . . . but only to increase human attachment among all its inhabitants . . . The novel . . . ends, exactly as it began, with the island’s mynah birds repeating the mantra they have been trained to mimic over and over again: “Attention.”

Like the happy inhabitants of Huxley’s Island, both cognition-enhancers and cognition-dullers can work together peaceably in a mutualism that discourages conflict.

Fortunately, the Nature editorialists appear in principle open to cognition-dulling methods, endorsing a nuanced and contextualized response:

Appropriate policy should prohibit coercion except in specific circumstances for specific occupations, justified by substantial gains in safety. It should also discourage indirect coercion. Employers, schools or governments should not generally require the use of cognitive enhancements. If particular enhancements are shown to be sufficiently safe and effective, this position might be revisited for those interventions.

The key then is to carefully consider how best to develop a pharmacopeia that safely and effectively cures tendencies to insubordination, daydreaming, dissatisfaction, and other inefficient habits.

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Surgical Strike on Social Suffering

The recent face transplant at the Cleveland Clinic raises some fascinating issues about the nature of personal identity and cutting edge medicine. A failing face transplant might create agonizing medical problems for the recipient, leading some to suggest that death-accelerating drugs should be available in that case. Current organ donation cards do not specify whether they authorize a face donation. The family of the face donor might find the transplant recipient’s new face uncannily like that of the relative they recently lost. Finally, there is the question of the cruelty of a society that made the transplant so pressing in the first place:

She “was called names and was humiliated,” Siemionow [the doctor who led the transplantation team] told reporters yesterday. . . . Eric Kodish, the Cleveland Clinic’s chief ethicist, added, “Human beings are inherently social creatures. A person who has sustained trauma or other devastation to the face is generally isolated and suffers tremendously.” He concluded: “The relief of suffering is at the core of medical ethics and provides abundant moral justification for this procedure.”

Yes, suffering cries out for relief. But when the suffering is social and the relief is surgical, where are we going? We’re drifting from a standard of necessity rooted in you to a standard—”socially crippled”—that’s dictated by others. And instead of changing them, we’re changing and endangering you. The Cleveland doctors say their patient consented freely. They asked her, for example, whether it was she or her family who wanted the transplant. But how free can your choice be when the reason you want it is to escape humiliation?

As Will Saletan concludes, “I feel for the Cleveland patient. I hope her new face ends her suffering. I just don’t want to end up killing her—and calling that her choice—because we made her life hell.”

As the cosmetic surgery boom abates in South Korea, it’s important to think of all the smaller ways in which competitive pressures and fear of lesser humiliations drive demand for these procedures. The greater the humiliation in store for the unattractive, the more this “luxury” becomes a necessity.

Evolutionary Pressures on Minds and Bodies

Corpus 2.0, a recent design project on potential human bodily evolution, has been spreading around the web. One model with a shoulder bump finds it much easier to keep her handbag steady. Other forms of “progress” include a “ridge in the nose developed for wearing glasses, ears moulded to accommodate earphones, a thumb with an extra joint for sending SMS messages more efficiently and a foot adapted to create the same posture as wearing high heels.” This work struck me as a less critical version of the “future farms” and other body modifications both proposed and ridiculed at the “Design and the Elastic Mind” show at MOMA earlier this year.

While many find these particular modifications to bodily form grotesque, opposition to unfortunate evolutionary pressures on attitudes and mental habits strikes me as much less developed. That’s one reason I cautioned against runaway “cognitive enhancements” in an article last year. The founder of Better Living Through Chemistry predicts that we should be happy to choose “average hedonic set point[s] of our children. . . . [so that] allelic combinations . . . .that leave their bearers predisposed to unpleasant states of consciousness . . . will be weeded out of the gene pool. . . [leading to] some form of paradise-engineering.” Following Walker Percy, I think such people are actually quite useful to a world too prone to “irrational exuberance”–even if introversion is maladaptive for the introvert himself.

The Retreat of the Real

The rise of digitized images has led many journalists to worry about credentializing any photo that comes their way. That skepticism is starting to spread:

Bloggers, who had already appointed themselves watchdogs over reporters, editors and producers, were now taking on photographers. While the goal of increased transparency in the media is laudable, it may foster greater cynicism about journalistic ethics. “Photographers were always able to manipulate pictures in the darkroom,” says Keith Morrison, a former Calgary Herald photographer who is now publisher of C-ing Magazine, a publication about photojournalism. “But now, as the public gains awareness of digital photography and Photoshop, they have stopped trusting the pictures in newspapers and magazines.”

It’s part of a larger cultural malaise about “what’s real:

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Sleepless in Science Fiction

There is an interesting collection of articles on transhumanism this month in a publication called The Global Spiral. Jean-Pierre Dupuy’s article Cybernetics is an Anti-Humanism sets the stage for the discussion:

In recent years, the enterprise of “making life from scratch” has been organized as a formal scientific discipline under the seemingly innocuous name of synthetic biology. In June 2007, the occasion of the first Kavli Futures Symposium at the University of Greenland in Ilulissat, leading researchers from around the world gathered to announce the convergence of work in synthetic biology and nanotechnology and to take stock of the most recent advances in the manufacture of artificial cells. Their call for a global effort to promote “the construction or redesign of biological systems components that do not naturally exist” evoked memories of the statement that was issued in Asilomar, California more than thirty years earlier, in 1975, by the pioneers of biotechnology. Like their predecessors, the founders of synthetic biology insisted not only on the splendid things they were poised to achieve, but also on the dangers that might flow from them. Accordingly, they invited society to prepare itself for the consequences, while laying down rules of ethical conduct for themselves. We know what became of the charter drawn up at Asilomar. A few years later, this attempt by scientists to regulate their own research had fallen to pieces. The dynamics of technological advance and the greed of the marketplace refused to suffer any limitation.

Count me as unsurprised–“self-regulation” is all too often a euphemism for no regulation at all. Given Dupuy’s observations of the mutual reinforcement of market and technological forces, I found Katherine Hayles’s treatment of a science fiction novel on genetic enhancement particularly interesting:

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