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The Decision Trap questions a dogma of our time: the assumption that genetic education empowers citizens and increases their autonomy. The Decision Trap: Genetic Education and Its Social Consequences ePub (Adobe DRM) can be read on any device that can open ePub (Adobe DRM) files. On February 18, 1971, United States President Richard Nixon proposed a National Health Strategy to Congress to ensure that good health care be readily available to all American citizens. Some political leaders have recognized the risks inherent in genetic testing and have made efforts to prevent the misuse of genetic information.
In this Spotlight, we guide you through the scientific, ethical, and social implications of genetic testing. Listen as a journalist describes his decision to undergo genetic testing for the devastating disease that killed his father.
Read about how a predictive genetic test saved a woman from succumbing to an inherited disease that killed her two sisters.
Watch a documentary trailer showing a young filmmaker’s fears and struggles after testing positive for a breast cancer gene mutation. Watch a NOVA scienceNOW video showing how personal genetic testing can reveal your genetic health risks. Would you buy a genetic test and explore your genetic predispositions without a doctor’s order or advice?
Learn how prenatal screening can provide expecting parents with their unborn child’s genetic information. Listen to this DNA Files radio program, which explores the benefits and uncertainties of predictive testing. Learn about the limitations of genetic testing in cases that lack treatment or risk-reducing strategies.
Examine the concerns surrounding genetic testing, such as potential discrimination and privacy and familial issues.

Learn about the Genetic Information Nondiscrimination Act, a US law that protects a person’s genetic information. Explore the bioethical dilemmas scientists face in providing patients with genetic testing information while protecting patients from undue stress. It argues that professional instructions about genes, genetic risks, and genetic test options convey a genetic worldview which destroys self-confidence and makes clients dependent on genetic experts and technologies. His proposal included $6 million toward the research and treatment of sickle cell disease, an inherited blood disorder that shortens a patient’s expected life span to less than fifty years, and ignited a national interest in this previously little-known condition. Twelve states had passed laws mandating sickle cell genetic testing targeted toward African Americans. Throughout the 1970s, perfectly healthy African Americans were denied educational opportunities, jobs, and insurance simply because they were carriers of sickle cell trait — meaning that they did not have the disease, but they could possibly have children with the disease. After the human genome was fully sequenced in 2003 by the International Human Genome Sequencing Consortium, genetic testing for traits and diseases became commonplace. The 1997 dystopian film Gattaca illustrates another possibility: that genetic testing could be misused by society to engineer human populations.
For example, in 2008 the US Congress passed the Genetic Information Nondiscrimination Act (GINA) to prohibit health insurers and employers from discriminating against Americans based on their genetic information and forbidding any type of mandatory genetic testing. As you explore the following links to articles, radio programs, videos, and personal stories, consider whether you would choose to undergo genetic testing to learn about the genes you carry.
Misinformation was rampant, and the general public and some doctors did not realize there is a difference between sickle cell trait and the more dangerous sickle cell disease. Today, companies like Navigenics and 23andMe offer direct-to-consumer tests that allow anyone to obtain their personal genetic information, with the right sum of money and without a doctor’s consultation.
While such legislation is a positive step, responsibility also falls on the public to learn about the uses and potential misuses of genetic testing. It clarifies the notion of the "gene" as it is commonly understood, and shows that, scientifically, the concept of genes as definable, causal agents is outdated.

African Americans do, in general, suffer from sickle cell disease by a higher proportion than many other populations. In some cases, parents of children with sickle cell trait were even told that those children would die before the age of twenty, even though sickle cell patients can live much longer.
Part two of the book investigates the hidden curriculum of genetic education, using genetic counselling as a prime example. But many African-American communities felt that the laws were partially motivated by racism, and that they subjected African Americans to a new form of discrimination: one based on their genetic makeup. This early history of sickle cell screening and false diagnosis illustrates the complexity of the social and ethical questions surrounding genetic testing. Outlandish as it may sound, is this scenario really impossible in a world that has seen genocides in Rwanda, Serbia, and Sudan just over the past twenty years? Genetic counselling is a professional service that aims to enable clients to make autonomous decisions about genetic test options and cope with the results.
Clearly, genetic testing is a powerful tool that must be handled with an understanding of its broader social impact. Predictive genetic tests allow us to examine our risk for developing a particular disease, and sometimes allow us to take steps to treat or prevent the disease from occurring. On May 16, 1972, President Nixon signed into law the National Sickle Cell Anemia Control Act, aimed at ending discriminatory testing practices by requiring that screening be voluntary. And, if it is to benefit society, the validity and utility of genetic testing must be carefully monitored and reviewed, wherever it is used.
What if you learned that you are likely to develop a disabling disease for which no treatment is currently known?

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