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As doctors and researchers continue to learn more about the relationships among genes, the environment, and diseases, they are making advances in predicting the likelihood of a person developing certain diseases as well as discovering innovations in the prevention and treatment of diseases. These are enhancing the notion of personalized medicine, which aims to customize an individual's health care by tailoring decisions and treatments based on his or her genetic information. The sequencing of the human genome was the first step in what many hope will be a new era in medicine. As in many medical advances, there are a number of ethical, legal, and social issues involved in personal genomics.
In this lesson, students explore some of the risks and benefits of gene-based medicine. They look at concerns related to genetic testing (which looks for particular genetic variations) and personal genome sequencing (which sequences the entire genome of an individual). Through videos and discussions, students learn about existing technologies for genetic testing and therapies. They also explore matters such as the emotional consequences of genetic testing, discrimination, and privacy issues. In small groups, students discuss scenarios and then share and analyze related opinions and concerns.
1. Review how abnormalities in a person's DNA can cause certain traits, including genetic disorders, and increase a person’s risk for some diseases. If students need a significant review, have them read Understanding Gene Testing (PDF) before beginning the lesson. Review with students the following types of genetic disorders and interventions:
2. Show the first half of the Should We Screen for Cancer Genes? Video. Stop the video after Catherine Elton says that you have a choice and don't have to know this information if you don't want to. As a class, discuss the following:
3. Explain to students that genetic testing usually cannot determine with certainty whether a person will develop particular diseases—it can only look for genetic risk factors that increase the probability of developing these particular diseases. The genetics associated with most diseases are very complex and not yet well understood—many different genes, along with a person's environment, influence the risk for disease. Currently, it is not possible to use genetic testing to reliably predict a person's risk for most diseases. As a class, discuss the following:
4. Show the second half of the Should We Screen for Cancer Genes? Video. As a class, discuss the following:
5. Explain how genetic testing can be used on in vitro embryos to select which ones to transfer to a woman’s uterus. Show The Ethics of Preimplantation Genetic Diagnosis Video. As a class, discuss the following:
6. Explain that in addition to revealing risk factors for potential future health conditions, personal genetic information can also sometimes reveal mutations for currently treatable conditions. Show The Costs and Benefits of Treating Gene Defects Video.
7. The last part of The Costs and Benefits of Treating Gene Defects Video addresses issues of privacy. As a class, discuss the following:
8. Expand the class discussion about personal privacy. Explain that the Genetic Information Nondiscrimination Act (GINA) of 2008 protects against genetic discrimination by employers and health insurance companies. However, life insurance, disability insurance, and long-term care insurance providers are not included. As a class, discuss the following:
9. Scientists are actively looking for ways to correct for mutated genes and to fix the problems caused by mutations. Genomics is already helping find cures for some genetic diseases, such as particular kinds of cystic fibrosis. At the same time, there is also controversy over the rights to the genes themselves. For example, researchers and companies have been granted patents on gene sequences, which means they control who may test for and use these genes.
Note: A patent granted by the government gives exclusive rights to the patent holder for a period of time. There are particular requirements that make a discovery patentable, such as novelty, nonobviousness, and not being a law of nature.
Show From the Cystic Fibrosis Gene to a Drug Video. As a class, discuss the following:
Have students work in small groups to discuss the issues presented in the Considering the Ethics of Genetic Testing—Group Discussion Scenarios (PDF) worksheet. Assign one scenario to each group and pass out the worksheets. Ask students to discuss the benefits and risks of different choices and to explore some of the ethical, legal, and social issues related to their scenario. Tell students that they may have very different opinions about their scenario—they do not need to come to a consensus on the issues, but they do need to be able to explain any differences of opinion. Have each group prepare a summary of their discussion, including their different viewpoints, to present to the rest of the class.
For additional curriculum resources on bioethics, check out Exploring Bioethics.