Short Answer Questions
- What is the difference between Whole Genome Sequencing and Genotype Analysis using SNPs, and what are the advantages of each?
- How is the autonomy of a family member relevant to a patient's decision to receive a genetic test?
- How did quality of life considerations lead Nancy Wexler to advise against taking the genetic test for Huntington's disease?
For Further Discussion
- Arguments for and against testing. Direct-to-consumer genetic tests for Type II diabetes can provide evidence as to how much more likely a patient is to contract the disease.
- What are the reasons that a patient might wish to take this test?
- How many ways can you think of that the results of this test, if they fell into particular hands, might actually harm the patient?
- Do you think such harms represent a real threat to consumers?
- In the balance, under what circumstances would you recommend a patient take a test for Type II diabetes? What protections (if any) would you recommend to prevent these test results from being abused?
- Given that whole genome sequencing provides more reliable genetic information, but is more expensive, who do you think should be eligible for such tests? How do we decide how to allocate this resource?
- Genetic Enhancement. Technology is becoming more readily available that may "improve" a person's genetic composition at the very early stages. Imagine that any parameter you wish could be adjusted at the zygote stage, from physical appearance, to intelligence, to health conditions.
- What problems would such a practice represent for society (if any)?
- If such practices became readily available, how would you recommend they be regulated?
- Would you endorse the practice if it were only restricted to preventing genetic health conditions like Huntington's? If so, how do we draw the line between prevention and enhancement?
- Would the available of such corrections to only a privileged portion of society be a problem? Why or why not?
- Regulating Genetic Practice. The Food and Drug Administration in the United States has prohibited the biggest direct-to-consumer providers of genetic tests from giving patients information about their genetic health conditions. Their worry is that it this kind of practice must be regulated. But there is another worry that they are being overly cautious, as you will find argued in this Nature article.
- Some of the central worries of the FDA are that providing consumers with these results will a) they may cause unnecessary distress; and b) consumers may fail to understand the significance of the data. If that's right, then in what sense are they a problem?
- Are these problems in any way different than the problems a patients may have with traditional physician-provided information about their health?
- The idea of "democratizing health care" is that health information can be provided by sources other than government or health professionals, such as web and computer analysis and direct-to-consumer genetics. What are the possible benefits (and problems) with this practice?
- Does preserving patient autonomy require that such democratic sources of health information be available?
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