Challenge
You were walking around campus and noticed a flyer offering cash for volunteers who would be willing to donate blood to a lab at your university. The lab is building a genetic database for research on diagnosis and treatment of a variety of genetic disorders. Because the lab guarantees your anonymity, you decide to provide them with a sample and add some money to your often-empty piggy bank.
Everything goes as planned until the researchers call you in for an unexpected follow-up visit. You learn that you tested positive for the gene for Huntington's disease, an incurable neurodegenerative disorder that may cause symptoms such as uncontrolled movement, cognitive impairment, and depression. As you get over the initial shock, you find yourself researching the disease on the internet and discover that one of your parents must also have the disease and could start exhibiting symptoms within the next few years. However, none of your grandparents (who are in their 70s) have ever shown symptoms.
Think of all the issues you now face:
Should you tell your parents what you have learned about their genetics through the testing of your own? Since there is no treatment for the disorder, is there any reason for them to worry about Huntington's disease before the symptoms begin? Should the lab who tested your blood even have told you? Your life would certainly be adversely altered by symptoms of the disease, but now it has been altered by simple knowledge that you might someday experience symptoms, even though you can't be sure? Is there any legal recourse you could take against the lab for telling you?
What about your eventual mate? Does he or she have a right to know about your genetic status before you attempt to have children? What are the chances that your child will inherit the disease?
When you graduate and start looking for jobs, do potential employers have a right to know about the possibility that you will not be an efficient employee if symptoms show up? Are there any repercussions if you do or do not offer this information?
How can you be sure the lab which performed the testing has adequate protections to keep your genetic information private? Life or health insurance companies would certainly want to know more about your genetics so they can assess their risk in insuring you. Is there any way to guarantee these records won't be leaked or stolen?
You learn that treatments for Huntington's disease are severely limited, but that genetic-based treatments have shown much potential. You may be offered participation in clinical trials to evaluate the efficacy of new pharmaceuticals or gene therapies. What concerns should you have before deciding to take part in a study like this, especially given the experience you had in the first study you volunteered for?
Continue to #2 'Generate Ideas'
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