Is Knowledge a Burden?

We saw the video called "Burden of Knowledge" today in class. In it, the question was raised of what to do with our increasing ability to perform amniotic screening for possible problems in a developing fetus. Some people felt it was important to have as much knowledge as possible before making a decision, while others felt that it was wrong to even attempt to get that knowledge. This question is complicated by the widely differing views on abortion. At this point in time, it is likely that many of the amniotic tests being performed might result in abortion if the fetus is "defective". On the other hand, a number of parents felt that the knowledge they got from the testing enabled them to deal with their new affected child in a way they never could have done without the testing - it let them prepare for the birth. Their purpose in having the test done was to enable them to prepare - not to abort the pregnancy.

My question to you is should these tests be available to couples who want to know? Is the doctor obligated to make the availability of such tests known to the couple? In 50 years (or sooner) it may be possible to correct the vast majority of problems before birth through gene therapy on the developing embryo? Does this change your perspective on how the tests should be handled?

Please remember to be civil in your answers. Everyone is entitled to their opinion. Through discussion, we might be able to understand each other.

Kurt Peters on Fri Jan 21 09:59:07 2000 wrote:
I'm confused. The "larger picture" seems to be the evolutionary development of humanity, with the implication that humans have no place interfering with their own development. On moral grounds I strongly disagree that such pride in our own ability to understand and progress beyond what is simply apparent in the world is wrong. I think that drive makes us human, and that we *should* be proud of it. Nonetheless, a contradiction arises from stating both that natural selection should not become artificially influenced (though, again, I'm not sure why human influence has become synonymous with "artificial") and that we should preserve and protect the lives of those who would have absolutely no hope of surviving in a world where natural selection -- which has no compassion or pity whatsoever -- was allowed free reign. More simply, aborting "defective" fetuses, not raising and "mainstreaming" them, would bring us closer to the world in which humans didn't interfere with the natural order of life. As it is, we usually don't see debilitating mutations as lethal, but rather many people spend their lives succesfully accomodating those affected with them; consequently, the damaging genes are unnaturally preserved. We must and always have allowed for mutations, but humans are the successful species they are precisely because flawed mutations failed. The approach we take now seems the one that will stagnate, or at least hinder, our species' development.

I think this argument ultimately draws upon our deep moral convictions about human nature, which is probably why we won't ever agree what to do. Insofar as I desire progress, both scientifically and phylogenically, I approve of genetic screening and the parents' choice to abort. The issue is more complicated, though (as the example of Huntington's Disease points out), and admittedly, the bent of my argument, taken to the extreme, would seem to tend toward eugenics. But fundamentally I believe that humans should make full use of their knowledge for their own benefit and advance.

Ioannis Retsos on Thu Jan 20 21:04:18 2000 wrote:
I believe that pre-natal screening for possible genetic defects should NOT be made an option to expecting parents. I recognize how difficult a position these parents are in, and though I admit that were I in a similar situation I would support genetic testing, I would nonetheless do so knowing that it is wrong. Even though the human element to the problem is very touching and it is difficult to look an expecting mother in the face and deny her these tests, I think we have to be clear headed about the issue and keep focused on the larger picture. We should remember that knowledge and wisdom are not synonymous and just because we now know how to do something doesnât mean that we should do it.

To pick and choose what traits we would like to see expressed in our children is in my opinion wrong and a doctor has a moral obligation not to provide this type of information. These genetic defects are naturally occurring and they are part of life. What would happen if mutation werenât allow to enter into the genetic code? The answer is that human beings would probably not exist since on an evolutionary level we are the result of a series of mutations.

The moment that we condone these tests as a society is the moment that we open up the floodgates to a host of problems. For instance do you perform selective abortions for Huntingtonâs Disease which manifests itself in late middle age and deny someone 45 years of a productive and fulfilling life? Or what if these tests become so common that insurance companies actually refuse to insure someone for not selectively aborting a ãdefectiveä fetus? Or what about when only some people canât afford these treatments and you end up having a class of human beings that is genetically ãbetterä. This is not a futuristic doomsday scenario but an actuality. While the people in the video were deciding how to make the perfect children, an average of 1000 children die every week in the Sudan from something so basic as starvation...

The bottom line is that life, whether pre-natal or not, is a crap shoot. To try to order it should not be the role of mankind. From the beginning of our civilization we find myriad examples in our literature and traditions, ranging from the Odyssey to the Judeo-Christian scriptures, that pride is that which does man in. Today this is as relevant as ever. I apologize for the length of this.


Prof. Gross on Thu Jan 20 01:09:57 2000 wrote:
In our litigious society, some physicians have actually been successfully sued for NOT recommending or performing amniotic tests. These suits have been filed by parents who have fostered a child with problems, are upset about it, and want to blame the doctor. Their rationale (as cold as it may seem) is that if they knew their child would be "defective" they would never have continued the pregnancy. Therefore, the doctor is to blame!

What position does this put the doctor in? When is it appropriate to recommend testing? Does it depend on the probability of a problem? on the cost of the procedure? the severity of the possible birth defect?

Bates on Wed Jan 19 12:26:18 2000 wrote:
I agree with both Julie and Amy. The decision should be left to the parents, with sufficient preparation and information from doctors/counselors and perhaps even from other families who have faced or are facing similar situations.

Julie on Wed Jan 19 08:46:11 2000 wrote:
I feel that this issue is so complex with a variety of possible approaches. However, after hearing the people who had the prenatal testing and who still had the child with abnormalities, I think the testing should be made available to potential parents. Although it seemed to result in the terminations of some pregnancies, it also better prepared parents for bringing their child into the world. As for the parents who chose to abort their pregnancy after learning that their child would be born with a genetic disorder, perhaps they should not have had the child anyway. Perhaps they were not equipped to deal with such a child. Another option, which I took from the movie is having the child and giving it up for adoption. This seems like a viable option that doctors should also communicate to their patients in such a situation.

Amy on Tue Jan 18 19:39:55 2000 wrote:
As long as women and couples have the right to decide whether or not to carry or terminate a pregnancy for any reason I believe that these tests should be available. Beyond that I think we would enter the abortion debate and it is already a given that abortion is legal and that women regretfully have them for a variety of reasons.

Even if abortion were outlawed it seems that the test might still serve a purpose in preparing or easing the minds of expecting parents. Therefore, if the individual so chooses they should have the right to know.

As for the obligation of the doctor, what are the normal obligations for the doctor informing the patient? I don't imagine they can read you each and every right you have - in this day I imagine it would not be possible. If the issue came up with a patient about pre-natal testing I would imagine the doctor in trying to give the best care to his patient would examine all options...

And if gene therapy could fix a defective developing fetus I don't think most people would argue against the benefits both emotionally and economically for the family or the child. Whether that is biologically right in the circle of life and in our society would probably not matter much to the parents who just discovered their unborn child has a problem that is within their power to fix. In this circumstance I imagine that these tests would be necessary to find such problems.