Testing for medical purposes brings its own set of problems. Only a limited number of genetic variations present the kind of clear-cut case for which PGD was originally developed: the certainty of a serious or fatal disease. But what about testing for genes that merely raise the risk of a disease? Or for genes linked to a relatively manageable disease, such as diabetes? How serious must a disease be to justify the costly and potentially risky process of IVF? "That is a major debate in the profession," says George Annas, chair of the department of health law, bioethics, and human rights at the Boston University School of Public Health. Another problem is that parents may eventually find themselves with more information than they or their doctors know how to use. As more disease-linked gene variants are discovered--and the list is rapidly growing--parents will face so many choices that it will be difficult, if not impossible, to determine which genetic combination will produce the healthiest child. In the United Kingdom, a government body licenses fertility labs and regulates which tests can be administered. But the United States has fewer rules; it is one of the few countries, for example, that permit nonmedical sex selection. "Today, in this country, the clinics are the gatekeepers," says Vardit Ravitsky, a bioethicist at the University of Pennsylvania. "If you have cash and can find a clinic to provide the service, you can get it, whether it's a test for Huntington's disease or sex selection." So decisions regarding PGD are left in the hands of doctors or clinics. Professional societies provide some ethical guidelines--the American Society for Reproductive Medicine, for example, recommends against sex selection for nonmedical reasons, though it has little to say about other aspects of PGD. But voluntary guidelines regulating a profit-driven industry may not be enough to help prospective parents. "I think there will be people hyping the advantages of this, which will be just like pharmaceutical advertising today," says Caplan. "I think people will be guilted into doing this, rather than choosing it." They may also be "guilted" into testing that doesn't make good on the promise of a healthier child; most of the newly discovered genes have relatively weak correlations with disease or play small roles in complicated processes, and some may affect the body in ways that scientists don't yet fully understand. Some kind of regulation for preimplantation genetic testing is needed, but the rules must focus not on limiting which tests a parent can choose but on making sure that clinics can scientifically justify the claims made for each test. Then parents and their doctors can begin to make informed choices. "I definitely think the government has a role to play in regulating the safety and quality of tests and in the application of tests," says Adamson. "But the final choice, once tests are considered to be scientifically legitimate, should be left up to patients and physicians." |
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The Fingerprints of Embryos
05/23/2008
Comments
lkrndu on 03/30/2007 at 5:14 AM
14
But. That is exactly what we will have here, ultimately, with pre-implantation genetic screening, and with genetic testing and pre-selection writ large. Medical testing for gross and severe and fatal defects - Down's syndrome, for example - is the secure corner about which no reasonable person could offer objections. But to insure offspring with nicer dimples?
The ethical tests fail. And will fail, in the onslaught of narcissistic self-fulfillment implicit in now having available - what to call them? - selective services.
Of course there is no bright line separating the extremes. This reader can offer two rough and frail observations, however.
1. If the number of people I have known personally who have suffered or died of genetically-related diseases had been subjected to pre-implantation tests, before they were 'conceived', my world - the world - would be far less interesting. And far less populous. I would go farther: it would be insufferably boring.
That would be a bad thing.
2. Dogs do it. The strongest, smartest, most adaptable are the mutts, while the sleekest, most conforming-to-human fantasy are also the weakest, most freighted with displasias, back problems, nervous disorders, stomachs that get contorted...and all the rest of the sorts of defects that are reinforced through artificial selection that favors the reproducing arbitrarily valued but physiologically and medically irrelevant characteristics.
That's a good thing.
And we should well note and follow that example.
Bob Tyson
karlhedderich on 03/30/2007 at 11:45 AM
9
I agree that when humans start trying to breed organisms for specific traits we often don't account for the whole system. An example of this is tomato breeding/engineering where as the tomatoes have become more uniform in size and color they have lost some of their flavor. The engineers failed to select for all of the traits that were important in a commercial setting. This is a major argument against genetic engineering (or any technology that significantly alters reproductive diversity), how can people determine what traits are "good" traits and how could we select for all of them. This objection to engineering your children seems to be an engineering problem that while significant it isn't intractable. All scientists would have to do is develop the understanding needed so that engineers could make well informed changes. People also argue that suffering leads to greater diversity in the world and while this is true I fail to see how it is a good thing.
gabrielg01 on 03/30/2007 at 4:58 PM
282
Genetic engineering promises to stop such molecular accidents before the person even comes into existence. The technology would work at the sperm or egg level, not at the embryo level.
As for the moral arguments - what would you tell your kid suffering from Huntington's disease? (or other disease - pick your favorite): "You know, we had the technology to prevent this, and give you a healthy life, but we thought that interfering with nature would be immoral..." If this kind of moral argument holds, then we can deny medical treatment for any other disease based on the principle "let nature run its course".
MITBeta on 03/30/2007 at 9:32 AM
21
karlhedderich on 03/30/2007 at 11:47 AM
9
mightybob on 04/01/2007 at 2:38 PM
6
swordfishdata on 04/02/2007 at 8:01 PM
7
Phineas on 04/01/2007 at 2:41 PM
43
Evolution has done a magnificent job but the temptation to alter ourselves will prove too strong. Why propagate bad genes when you have choice? Animal research is applicable to the human animal.The laudable goal will be to improve our lot. Polio today; Huntington's tomorrow.
There are serious potential pitfalls but Folks will fiddle.