EDST 391 Ethics & the Human Genome

Name:
Date:
"Calendar"

Assignment for Day 16

Designer Babies

Maggie & Rachel’s Day!


Readings:

·         GenoChoice: Create Your Own Genetically Health Child Online! Click the button (the QuickTime Version) to create your own child.

·         "How far should we push mother nature? Making babies: Technology is evolving faster than our ability to weight the cost and ethics," Newsweek Magazine, January 17, 1994.

·         What is A Designer Baby? gives a basic scientific point of view of genetic testing on embryos. It also talks about other ethical issues like “designing” disabled children and “designing” a child whose tissue was a perfect match for his dying older sister (in order to use for transplant).

·         Gattaca, excerpt from the screenplay (not required).

o   Short excerpts from the film will be shown in class

·         “Slippery slope to eugenics,” Slate Magazine (not required)


Thinking assignment for the presentation:

 

·         Consider the readings and the web activity. Would you like to be able to make decisions about your child in that way? A click of a button (and thousands of dollars) and any potential problem is solved? What are the potential risks of this behavior for society? Think about both sides of the argument presented in the readings and consider what decision you would make. Also be prepared for the following question after we watch the movie excerpts in class: Could we ever become Gattaca?

 

Writing assignment (covers both days):

·         Background—limits to test accuracy: It turns out that your choices are actually a bit more complicated, because the relation between genotype and phenotype is only probabilistic for most traits of interest, from diabetes and cancer to height and intelligence. Why? There are various reasons. One is that many genes reflect differences in susceptibility to disease when exposed to certain types of environmental triggers, that is, probability of getting the disease if exposed to the toxin (say 10%, 40%, or 80% chance). A second is that many conditions are polygenic (involve many genes) but we don’t know all the genes involved (intelligence). A third example is that the same condition can be produced by completely different mutations (various neurological diseases). That is, there are no sure bets.

·         More background—difficulties of choice under uncertainty: The new genetic tests provide valuable information, but it’s not always clear what action we should take as a result. Here are two situations in which pregnant women seek the same prenatal test to see if their baby will develop Pulmonary Atrophy Disease (PAD), in which children’s lungs cease to develop normally by age 2 and are fail to supply the body and brain sufficient oxygen. This leads to mental retardation, poor motor and emotional control, and general physical weakness and wasting. Affected children generally die of congestive heart failure by age 10. It is entirely up to the couples involved to decide what to do if the test results come back “positive” (fetus has the genes in question).

o   Genetic counseling clinic: This is a reproductive counseling clinic where couples come to find out if their baby has the genes. They come because the disease runs in their family and they are concerned that their baby might also be affected. The following table describes the accuracy of this genetic test for forecasting the phenotypic condition of children brought to term by couples having family histories of the disease.

 

           

 

Disease Phenotype Seen by Age 2

 

Test results:

+

-

 

+

900

100

 

-

10

950

 

 

 

 

 

 

 

o   Public health screening: The State of New York has decided that all prospective parents should have access to this test. It therefore provides it free at many clinics and mobile vans to any pregnant woman who wants it. The state justifies this service by noting that it will identify 1,000 pregnancies per year where the babies would be born with this costly and devastating disease. It got that number from the following table, which is from a large study of the general population.  

 

 

 

Disease Phenotype Seen by age 2

 

Test results:

+

-

 

+

1000

9,000

 

-

150

90,000

 

 

 

 

 

 

o   Your task: What are the ethical considerations of using the test in the two settings? Please refer to the sensitivity, specificity, predictive value positive, and predictive value negative, as appropriate, in your answer.