Rights of gene-altered kids, clones spill from TV plot - to reality
By Lori B. Andrews
CHICAGO - A new television series on CBS, "Century City," portrays the challenges facing lawyers in the year 2030: criminal cases about human cloning, malpractice cases about genetic testing, and domestic disputes over uploading an ex-lover's personality into electronic appliances.
While the plots sound like outrageous flights of fancy, they resemble current legal controversies and highlight the need for action now to regulate our Brave New World.
I've seen firsthand the far-reaching impacts of new technologies. When Dolly the sheep was cloned, the government of Dubai, in the United Arab Emirates, asked me to help create a legal framework for cloning men (and only men). When adult siblings publicly battled over one's decision to have their late father's head placed in cryogenic storage, I was called for a legal opinion on the rights of severed heads. When a fertility doctor refused to give back a woman's frozen embryo, I handled the case, obtaining the return of her potential child. When the federal government decided to finance the Human Genome Project, I headed the national advisory commission on ethical, legal, and social issues surrounding this scientific odyssey.
I'm hoping "Century City" will inspire people to demand appropriate legal policies about the genetic technologies, reproductive technologies, and nanotechnologies that are reshaping our lives. Congress is now considering whether insurance companies may deny coverage to healthy women who carry a gene believed linked to increased risk of breast cancer. [P6: We interrupt this paragraph to focus your attention correctly on the previous two sentances. Thank you.]Courts are determining whether a couple can sue a sperm bank because their healthy baby was not as attractive as they wished - and whether a girl born with a disability can sue her parents for not aborting her when prenatal tests revealed the problem.
Posted by P6 at May 13, 2004 08:27 PM
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Comments
"While the plots sound like outrageous flights of fancy, they resemble current legal controversies and highlight the need for action now to regulate our Brave New World."
It takes a fair amount of hubris to assume you have the wisdom to regulate all the unanticipated uses of things that actually have yet to be invented. It's hard enough to regulate things we think we understand well.
With any luck this guy can regulate incipient genetic technologies that might someday cure cancer or regrow organs out of existence.
Posted by mark safranski at May 13, 2004 11:56 PM
Why shouldn't insurance companies demand higher premiums from those presenting a higher risk?
Males, being male through no fault of their own, already pay higher life insurance than women because of lower life expectancy.
I'm curious to find out why some genes can be the base for higher premiums but other genes not.
I don't know why you guys automatically equate "regulate" with "restrict."
As to why one set of genes should be the basis of anything at all, you'd have to ask someone not in favor of a single payer health care system.
Posted by P6 at May 14, 2004 06:39 AMAfter the rigor I had to muster for the race discussion this week, that was too easy.
Posted by P6 at May 14, 2004 06:40 AM"I don't know why you guys automatically equate "regulate" with "restrict." "
Historical precedent.
Preemptive regulation - like with the Bush *regulations* on stem cell research- is inherently intended to be restrictive in terms of outcome. Control is the point, benefits are secondary.
The problem is, in these instances of cutting edge or hypothetical technologies, the ability of would-be regulators to predict the probable outcomes of " X" by mapping them out in decision tree fashion is worse than usual. The information and premises from which they are extrapolating are exceedingly slim and the potentialities that they are foreclosing on are enormous.
It's like allowing a guy with 5 % of normal vision to give you a lift in his car.
Posted by mark safranski at May 14, 2004 10:21 AM"I don't know why you guys automatically equate "regulate" with "restrict." "Historical precedent.
Okay, I'm going admit that's a legitimate reason.
But there are regulations that spur development as well. Regulations in and of themselves aren't the problem.
At times there are good reasons to regulate or some types regulation that can serve the same purpose of traffic laws in terms of allowing a greater volume of activity with a minimum of conflict. Neutral " rationalizers" of spontaneous behavior.
But the guy in the article is off on a self-aggrandizing crusade that is a) pointless and b) potentially costly in terms of inhibiting scientific progress at both the pure and applied levels. He can't possibly know where research is going to end up when the best scientists themselves don't know.
I had dinner last night with a Phd. in experimental physics - he had a stream of complaints about very promising fields stagnating ( quantum computing, plasma physics, bioengineering ) for lack of investment, regulations and the anti-tech " go-slow " approach. Claimed we are losing our edge in fields we pioneered and are missing out on a potential scientific " explosion" .
Posted by mark safranski at May 14, 2004 01:48 PMI had dinner last night with a Phd. in experimental physics - he had a stream of complaints about very promising fields stagnating ( quantum computing, plasma physics, bioengineering ) for lack of investment, regulations and the anti-tech " go-slow " approach.
Did he mention how long it's been going on?
It is a problem. Believe me I'm totally on your side when it comes to anti-Ludditism. I'm only on the other side because you went after regulations instead of stupid regulations.
Posted by P6 at May 14, 2004 03:17 PM"Did he mention how long it's been going on?"
In some fields involving high end experimental and theoretical physics, as much as ten years ( we've bumped up against what we can test with existing particle and linear accelerators).
Other fields, especially in genetic engineering, much less - here the crypto-opus Dei Catholic bioethics of Kass have had a chilling effect. Another part of the problem is that seed money - private, public,university, institutional nonprofit - has shifted into projects with quick turn-around times at the expense of pure research - the latter is what creates the spin-off possibilities with the quick turn-around times
Posted by mark safranski at May 14, 2004 07:22 PM
There is a problem that regulation can appear sensible but have disastrous consequences.
Let's say I want a lifeinsurance. Under free market conditions, companies will want me to pay a premium commensurate with the risk I present.
Now, at first glance it may appear "just" to forbid insurance companies from performing certain tests for "bad" genes. The reasoning is: people who have certain "bad" genes are already suffering enough, it would be "unfair" for them to pay higher premiums than those with healthy genes on top of that.
What will happen in reality, however, is that people who present higher risk that can't be legally tested for will be the only ones that can actually "profit" from the lifeinsurance, while people with healthy genes will always put more in the system than they get out of it.
The result will be that people with healthy genes will start looking for more efficient substitute products to the regulated lifeinsurance.
Once this happens, there will be a reinforcing feedback loop, where premiums will rise, more healthy people opt out, and the proportion of customers with "bad" genes increases to unity.
The eventual outcome will be, at the very best, the same as if the regulation didn"t exist. More likely, products that were available on the market before regulation will no longer be available because of the fractured market.
Posted by dof at May 15, 2004 04:29 AMSingle payer health care gets rid of your every concern.
I don't think single payer health care can cover life insurance.
No, but it keeps you from being so broke you leave your family in debt when you die.