With scientific breakthroughs come new, unanticipated dilemmas that force us to rethink how we view the world, our culture and each other. One good example comes from the genetic discoveries science has made in the past fifty years; we now live in an era when we can test tissue samples or blood and determine whether or not a person is at-risk for a variety of debilitating or deadly diseases. While this ability has clear benefits, it also has some potentially thorny side-effects.
Do some background reading on genetic discrimination and the Genetic Information Nondiscrimination Act of 2008 (GINA), starting here: http://www.genome.gov/10002328 and here: http://www.genome.gov/10002077, and then continuing with any other resources you find helpful.
Reflect on your reading as you discuss the following questions during the week:
Genetic tests are incredibly valuable tools. If you were in charge of the Department of Health and Human Services, how might you guarantee that genetic tests will be used to benefit people, not to harm them?
Even though there have not yet been any genetic discrimination cases tried in U.S. courts, why is it important to establish a set of ethical standards now?
What changes could be made to GINA in order to make it better?
It can be said that our present system of checks and balances shall help alleviate anxieties about discrimination or misuse of genetic tests for US citizens. The following initiatives have taken place in the last decade in the area of genetic information use and nondiscrimination issues.
Legislation on Genetic Discrimination
Genetic Information Nondiscrimination Act of 2008: legislation from the 110th Congress
Existing Federal Anti-Discrimination Laws and How They Apply to Genetics: Americans with Disabilities Act, the Health Insurance Portability and Accountability Act of 1996 and the Civil Rights Act apply to genetics.
Cases of Genetic Discrimination
There has been no genetic employment discrimination cases brought before U.S. federal or state courts but the Equal Employment Opportunity Commission settled a lawsuit involving genetic information.
Genetic Information Non-Discrimination Act of 2005 (S.306) was established
Genetic Information Non-Discrimination Act of 2005 (H.R.1227) was written
Statement of White House support for S. 306http://www.whitehouse.gov/omb/legislative/sap/109-1/s306sap-s.pdf
Statement of support from Michael Leavitt, Secretary of Health and Human Services, for genetic nondiscrimination ...
Scientific breakthroughs for the human body are admirable but setbacks, due to ethics and legal policy are discussed.