Term
| was sued after taking newborn blood samples and turning them over to the government for the creation of a national mitochondrial DNA registry |
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Definition
| 2009 Texas Department of Health Services (DSHS) |
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Term
| began taking DNA blood samples from members of the Havasupai Indian tribe under the premise it may lead to insight for high rates of Type II diabetes among tribe members. Was used for variety of purposes--- ended in a $700,000 settlement |
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Definition
| 1990 geneticist (Therese Markow) from Arizona State University |
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Term
| 16 states had in place legislations requiring SCA screening for all African American newborns, pregnant women, young children, and couples applying for marriage licenses |
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Definition
| In the 1960s researched developed a test for sickle cell anemia |
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Term
| Pompe disease= rare neurological disorder cannot break down glycogen in muscles. |
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Definition
| Genzyme has a pharmaceutical that replaces the missing enzyme (Myozyme and Lumizyme)-- cost run as high as $650,000/year |
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Term
| personalized genome tests |
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Definition
| costs $3 billion in 2002, now some speculate they will cost as little as $1000 |
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Term
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Definition
| who is properly credentialed to use this information? |
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Term
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Definition
| Are rights w/ respect to genetic information any different from those of other aspects of our health care record? |
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Term
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Definition
| what are fair uses of your genetic information? Genetic Information Nondiscrimination Act= GINA |
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Term
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Definition
| do patients or research subjects own their tissues/genetic samples? |
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Term
| aims at restoring or maintaining health for a particular patient whose well-being is the central focus of the activity |
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Definition
| therapy (pharmacy, medicine, nursing, etc) |
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Term
| aims are producing generalizable knowledge that will potentially benefit anyone in society, both who serve as experimental subjects and those who don't |
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Definition
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Term
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Definition
| informed consent, proper balance of benefits vs. risks, scientifically-valid research design |
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Term
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Definition
| promote patient well-being, respect for patient autonomy and protection of patient confidentiality are central |
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Term
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Definition
| human flourishing-- also concerns the social, relational, institutional, political, and other settings necessary for our flourishing |
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