antony@george.lbl.gov (Antony A. Courtney) (09/25/90)
Biologist, Researchers, and any other interested parties; As part of a project for a course entitled "Politics and Power", I am exploring the gray area of legislation surrounding the use of genetic tests. The press has a very definite, rather paranoid perspective on this issue, which is why I am posting here. I hope that a few of you can provide information relevant to BOTH sides of the issue, and not the simplistic (and in my view myopic) fear of "Brave New World" if the government becomes involved in any way which the press seems to thrive upon. Such questioning is important and valuable to keep government honest, but does not make for a particularly fair rhetorical exploration of the issue. The issue, as stated for my class is as follows: Should congress provide extra incentives to those parents whose genetic profiles indicate their children will be healthy? The definition of "healthy" of course gets tricky, but assume, for rhetorical purposes that we can all agree on what "healthy" is. I don't think there are too many people out there who will argue that Cystic Fibrosis is a "healthy" characteristic. The tone of this issue statement is important. Congress is not STOPPING anyone from having children, so is not "weeding out" any genes DIRECTLY and is only focusing on genes which EVERYONE will agree are bad. The Pro argument is that Congress has a responsibility to ensure the health and well-being of the population, and should encourage people to act responsibly in deciding about children. I think most would agree that it would be NICE if people decided not to have children if they knew those children would have some genetic disease, hence removing such "inferior" genes from the gene pool. Furthermore, (a) other nations will be doing it, and it may have a far more elitist bent to it, and (b) congress isn't "stopping" anyone from having children, they are just providing "encouragement" for those that will have healthy children. Con argument is that if an individual is "genetically superior", then he should be able to survive and adapt best anyway, and is about the LAST person who should need incentives or assistance. Further con argument is that added incentives today turn into necessities tommorow. As time goes on, people will NEED to pass a certain genetic test to qualify for these "incentive programs" if they are to have any hope of affording children. Any information or arguments you can offer which assist either side of the issue would be appreciated tremendously, as would pointers to sources, etc. This class takes the form of a model congress, so it should be particularly interesting to observe how the controversy takes form. I'd be glad to send information about the outcome to anyone who helps with information or arguments on either side. Furthermore, I recognize that there may be many out there who have a particular view on this issue, but because of political pressures or the amount of friction taking a certain stand would generate, do not wish to come out and take a stand. If you wish to offer your opinions/arguments via email, I can insure your confidentiality. My main interest is in collecting arguments. Other than that, however, I would rather like to see pro and con aspects of this issue explored publically. The string of postings would hopefully be a rather interesting tangent to what are fairly underused newsgroups. Thanks for you help, antony P.S. The viewpoints and biases in this article do not in ANY WAY reflect those of my employer. They are probably quite different, this being berkeley and all... -- ******************************************************************************* Antony A. Courtney antony@george.lbl.gov Advanced Development Group ucbvax!csam.lbl.gov!antony Lawrence Berkeley Laboratory (415) 486-6692
joe@GENETICS.WASHINGTON.EDU (Joe Felsenstein) (09/26/90)
Antony Courtney's "gray area" makes an assumption, one that is bigger than one might think. He states one of the main arguments for incentives for reproduction of > parents whose genetic > profiles indicate their children will be healthy as being that it would discourage people with "unhealthy" genes not to reproduce, > hence removing such "inferior" genes from the > gene pool. It seems as if this should have a large effect, but actually it would in most cases have such a small effect (even if the incentives worked) that the advantage is likely to be trivial. If a mutant allele is strongly deleterious it will not be passed on to future generations anyway, whether or not the individuals are born. If it is recessive, only a tiny fraction of all copies of the gene are in affected individuals, and if they are eliminated there is only a small change per generation in the gene frequency (for example, only about 1% of copies of the cystic fibrosis allele are contained in affected individuals). The cases in which a substantial effect could be obtained would be dominant genes of small effect on fitness but large social cost of the affected individual (Huntington's disease comes to mind). There are not too many of these kinds of genes that I know of. Thus even in the unlikely event that such a policy would (a) be introduced and (b) affect reproductive patterns, it would have a rather small effect on healthiness of future generations. I can think of better uses for the money. There is a population genetics literature on the related question of whether curing genetic disorders will lead to a rapidly rising tide of cases. It won't: Crow, J.F. 1966. The quality of people: human evolutionary changes. Bioscience 863-867. Motulsky, A.G., G.R. Fraser, and J. Felsenstein. 1971. Public health and long-term genetic implications of intrauterine diagnosis and selective abortion. Birth Defects -- Original Article Series vol. 7, no. 5, pages 22-32. ---- Joe Felsenstein, Dept. of Genetics, Univ. of Washington, Seattle, WA 98195 Internet/ARPANet: joe@genetics.washington.edu (IP No. 128.208.128.1) Bitnet/EARN: felsenst@uwalocke UUCP: ... uw-beaver!evolution.genetics!joe
IAE@CU.NIH.GOV ("Irene Anne Eckstrand") (09/26/90)
With respect to Anthony's and Joe's comments, I am reminded of a comment made by Marjory Guthrie (Woody Guthrie's wife). When asked about the implications of screening for Huntington's disorder (remember that Woody died of HD), Marjory asked if the world really would have been better off without Woody, his music, and his ideas. Even in the case where eugenics might have an effect on gene frequency, the case for incentives is pretty questionable. Further, I would like to suggest that we consider thinking about different forms of a gene as VARIANTS rather than as diseases. irene eckstrand nih iae@nihcu.bitnet