Thursday, October 07, 2004

R.P. Harrison on the Coming Transhuman Debate

I think we're between the human and the posthuman. We're all going to have to choose sides. Either we are for the human or we are not. What that means is going to be the major debate in the decade to come.
Robert Pogue Harrison, Stanford University
author "The Dominion of the Dead"
on "Death and the Dead" - Odyssey - WBEZ- October 7, 2004

Wednesday, October 06, 2004

Cyborg Rights for the Disabled, Not Just Right to Die

I'm generally very suspicious of people who want to forbid people from making certain choices because they can't make them freely. "You can't [smoke dope/use reproductive technology/kill yourself/eat McDonalds] until we defeat [capitalism/racism/patriarchy/disableism/consumerism]!"

On the other hand, there are many people - children, the incarcerated, the mentally ill and retarded, and people in extremis - who can't make "free" decisions, and it is the obligation of caregivers and society to ensure that we don't allow them to hurt themselves by making incompetent decisions. It is also our responsibility to endeavour to bring them to a state of adult, sane, educated, free, rationality, to the extent possible, and then turn decision-making back over to them.

One troubling question is when and if physically disabled people who want to, for instance, remove themselves from life-saving therapy should ever be stopped on the grounds that they can't yet make a free decision. If they are in terrible pain or depression from an accident, and the pain or depression is potentially transient, then one might get a court order to continue treatment until their pain or depression are stabilized. But how long can you tell someone who is slowly dying of a degenerative nerve disease that their depression at the prospect of a slow slide into darkness is just stinkin' thinkin', and that you won't turn off their respirator?

In the article below the famous medical ethicist Howard Brody apologizes for arguing for the right-to-die of a disabled man, David Rivlin, who he now believes should have been kept from removing his life-saving treatment until he had received additional counseling and social interventions.

I think this is a transhumanist issue as well, since new remediative/stem-cell/cyborg technologies could also be argued to be things that the disabled should be given a shot at before we allow them to kill themselves. After all giving people the right to kill themselves when we refuse to provide them a reasonable quality of life is basically murder.

For radical cyborgs to come out for strong social rights to technological accomodations, high-tech deinstitutionalization, and assistive/remediative technology for the disabled would help balance and contextualize our strong advocacy for the right-to-die (which I don't think we should back down from). Its still a sticky wicket - "Sorry, we won't turn off your respirator till you let us stick this chip in your head which will give you a wonderful new life in VR..."

But it is undeniable that most newly disabled people more or less return to their happiness set-point after they adjust to their injuries, and very few terminally ill people who petition for the the right to kill themselves ever use it. Transhumanists are the party of life as much as they are the party of freedom: let's fight as hard for people's right to live technologically-assisted lives as we do for their right to die techless.
A bioethicist offers an apology

....Rivlin was paralyzed in all four limbs and could not breathe on his own without the assistance of a ventilator. In the 1980s he was living in a nursing home near Detroit. He appealed to a county court to be allowed to die by having the ventilator disconnected. A psychiatrist judged him to be mentally competent to make such decisions....

I am now embarrassed to realize how limited was the basis on which I made my decisions about David Rivlin. In hindsight, it has been very well documented that there was no medical need for Rivlin to be effectively incarcerated in a nursing home. If Rivlin had been given access to a reasonable amount of community resources, of the sort that other persons with disabilities were making use of at the time, he could have been moved out of the nursing home and probably could have had his own apartment. He could have been much more able to see friends, get outside a bit, and generally have a much more interesting and stimulating life. The reasons he gave for wanting to die were precisely how boring and meaningless life was for him.

This is the key lesson that disabilities advocates are trying to teach the rest of us. If we look at a case one way, it seems that the problem is the person's physical disability. If we shift our view, we realize that the problem is not the disability, but rather the refusal of society to make reasonable and not terribly expensive accommodations to it.

There's every reason to believe in hindsight that David Rivlin died unnecessarily, and that we who claimed to care about his "rights" should have been demanding that services be made available for him rather than that he be allowed to die. As one who argued the wrong thing back then, I apologize for my shortsightedness.

Howard Brody, M.D., is a University Distinguished Professor in the College of Human Medicine at MSU and a family-practice physician.

Tuesday, October 05, 2004

Caplan: Stem-cell research a pawn in election politics

[via Sentient Developments] The more I read Art Caplan's work the more I like him.

His recent OpEd, "Stem-cell research a pawn in election politics," is an excellent critique of Bush's confused and misguided stem cell policy. Bush's policy, says Caplan, makes a mockery of the moral issues involved:
Not only is the president’s compromise nothing of the sort, his moral reasoning, and that of his defenders, is at best obtuse. Consider these points:

* The president says that embryo destruction is wrong, but still allows research on embryos destroyed before August 2001. Huh?

* The president says that embryo destruction is wrong, but does absolutely nothing to prevent the daily destruction of embryos in fertility clinics across the United States. What?

* The president says that embryo destruction is wrong, but fails to tell us whether he really believes that an embryo destined to be destroyed at a fertility clinic but now residing in a Petri dish is morally on par with a child suffering from juvenile diabetes or a person who cannot walk due to a spinal-cord injury. Huh?

* And the president says that embryo destruction is wrong, but does not tell us what he proposes to do about American scientists heading overseas to conduct embryonic stem-cell research in South Korea, Britain, China or Singapore, and then publishing the results in American journals and seeking American patents. Why?

Furthermore, consider Bush's position on cloning for stem-cell research. Using the techniques involved in creating Dolly the sheep, it is possible to create cloned human embryos for use as a source of embryonic stem cells. But the president has done nothing but vigorously try to ban this method for getting stem cells. While it otherwise has little time for the United Nations, the Bush administration is currently devoting much energy to trying to persuade the world body to ban cloning for the purposes of stem-cell research.
Caplan concludes by arguing that the Bush administration has painted themselves into a corner:
So what is really going on here? What's going on is that the president’s defenders are in a political pickle that they themselves created.

Bush believes that human life and human rights begin at conception even if conception occurs in a Petri dish. The president and his operatives know that their core base of supporters fervently opposes all forms of abortion and agrees that embryos are people from the moment of conception. They also know that the vast majority of American people do not agree with these views.

So, the Bush administration made a political calculation to use opposition to stem-cell research and cloning as a low-risk stalking horse to advance its anti-abortion agenda and secure support among its most avid anti-abortion constituents.
Interestingly, Caplan ends the piece with a moderately partisan outro in which he says, "Whatever your views about the upcoming presidential election, have no doubt about where the candidates stand on this issue — Bush is opposed to stem-cell research, Sen. John Kerry is not."

Hmmmm. I wonder if he has his sights set on the Chair position for the President's Council on Bioethics. Even from here in Canada, I'd love to see Caplan replace Leon Kass. We can only hope.

Equality and Human Enhancement Technologies

Georgia Tech prof Roberta Berry presented a paper on "Equality and Human Enhancement Technologies" at the meetings of the Association on Politics and the Life Sciences that argues:
Abstract: Equal protection is a normative principle enshrined in the U.S. Constitution, and there is widely shared commitment to some broader conception of social and political equality in American life, although political philosophers, policymakers, and members of the public disagree in their formulations of the concept and disagree about its appropriate instantiation in concrete public policies. In this paper, I will explore how human enhancement technologies, from performance enhancement drugs at present to the possible advent of germline genetic engineering in the future, reveal the difficulties in formulating a coherent conception of social and political equality and the strain of preserving a commitment to any of these conceptions of equality when tested against the pull of other widely shared commitments. I argue that the approaches of political philosophers Rawls and Dworkin, for example, are deeply problematic when tested by the prospect of germline genetic engineering. I conclude that there is an important role for local conceptions of equality that are particular to contexts, from sporting competitions to the political community to the family.
Since Dworkin argues for universal access to enhancement therapies, I think this means she thinks we need bans to preserve equality, but I'm looking forward to reading the paper.