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The Future of Medical Advances and Genetic Discrimination

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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.

Genetic tests
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?

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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 ...

Solution Summary

Scientific breakthroughs for the human body are admirable but setbacks, due to ethics and legal policy are discussed.

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Discrimination in the Genetic Age

See the attached file.

THINKING ABOUT DISCRIMINATION IN THE GENETIC AGE
Paul Steven Miller27
The information age has taken hold, and the genetic revolution is in full swing. With apologies to Aldous Huxley, we stand at the precipice of a brave new world.

...History has taught us that the wonders of science hold unique power to sway and se- duce, and too often to corrupt, the course of human nature. James Watson [co-discoverer of the double helix] has urged that genetic progress in health can come only with a firm awareness of the potential for abuse. Whether the scientific community is mobilized to deride some- thing as junk science or voodoo genetics may ultimately not matter. Sometimes public opinion and market forces prevail, regardless of whether something is scientifically rational.
As humanity charts a new course, it...must insist that genetic profiles?in whatever form they take?remain in the control of the individual, and should never be used to violate fundamental human rights. The challenge for scientists, philosophers, ethicists, jurists, and policymakers is how to best balance the rights of the individual against the needs of society in this rapidly changing world.

Eugenics and Genetics
The U.S. Supreme Court legitimized state-sponsored sterilization in the name of eugenics in its landmark decision of Buck v. Bell. Carrie Buck was sent to the State Colony of Epileptics and the Feeble-Minded in Virginia to have a child conceived when she was raped by the nephew of her foster parents. At that time, Virginia permitted sexual sterilization when it was determined that a patient or "inmate" was afflicted with hereditary forms of in- sanity or imbecility. The authors of the law designed it to prevent the reproduction of "mentally defective" people in the best interest of the patient and society. Buck was ordered sterilized against her will. Dr. Albert Priddy (superintendent of the State Colony for Epileptics and Feeble-Minded) and Aubrey Strode (counsel for the State Colony and drafter of Virginia's sterilization law) chose Buck as the test case for the new law.... In its case, the State of Virginia simply analogized the forced sterilization to compulsory vaccinations.

In 1927, the U.S. Supreme Court...dismissed Buck's concerns. An employee of the Eugenics Record Office studied Buck's medical records and concluded that she exemplified the "shiftless, ignorant, and worthless class of anti-social whites in the South." Despite her appeals to the highest court in the land, Carrie Buck could not be spared from the cruelest corruption of Darwin's theories.

The Court emphasized that Carrie Buck was the daughter of a "feeble-minded" mother and the mother of an "illegitimate" feeble-minded daughter. Justice Oliver Wendell Holmes wrote in the opinion. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.

Years later in 1979, researchers determined that Carrie Buck, her sister, Doris, who was also sterilized, and her daughter, Vivian, all possessed standard intelligence. According to one report, this brand of pseudoscience permitted the forcible sterilization of 60,000 Americans in the 40 years after Buck v. Bell.

Genetic Discrimination in the Workplace
... Should an employer have access to this genetic information? Should the employer know a person's genetic information even if that person chooses not to know it? Where should the line be drawn between legitimate concerns about occupational safety and an individual's fundamental rights of privacy and self-determination? Should an employer be able to participate in, or influence these most personal questions and issues? What protections do employees have to ensure that their genetic information will not be misused?

The potential for genetic discrimination...defined as an employer taking an adverse employment action based upon an asymptomatic, genetic predisposition to a disease or medical condition [is real].... Most genetic markers cannot predict that an individual will get sick, only that there is a greater likelihood that he or she will actually fall ill. It is important to keep in mind that our genes are only one part of our destiny....

It is difficult to know precisely how prevalent is the use of genetic testing in the work- place.... [T]here is a lack of empirical evidence measuring the extent to which, or for what purposes, employers presently seek genetic information about their employees or applicants. ...
... Craig Venter, the pioneering genetic scientist, has said that the fear of the misuse of genetic information by employers and insurers is the most significant barrier to genetic advances?greater than the inherent pitfalls that mark the journey to scientific discovery.

... In 1995, the U.S. Equal Employment Opportunity Commission (EEOC) ... adopted the view that the ADA prohibits discrimination against workers based on their genetic makeup.... The EEOC's legal theory has never been tested in the courts....In addition to [proposed] federal law, 34 states have enacted laws that, in one form or another, prohibit the use of genetic information in the workplace. These laws vary widely in form and breadth.

It is important to note that no genetic employment discrimination case has ever been decided, either in federal or state court. Indeed, there have only been a few charges of discrimination ␣led with the EEOC or the companion state agencies alleging genetic discrimination. However, in 2002, the EEOC ␣led a lawsuit against the Burlington Northern and Santa Fe Railroad, alleging genetic employment discrimination...in violation of the ADA.

... The EEOC alleged that Burlington Northern subjected its employees to surreptitious genetic testing. [The railroad] was testing to identify a genetic marker for carpal tunnel syndrome to address a high incidence of repetitive stress injuries among its employees. The EEOC further alleged that at least one employee was threatened with discipline and possible termination for refusing to take the genetic test once it was discovered.

Shortly after filing the case, the EEOC and Burlington Northern announced a mediated settlement in the amount of $2.2 million. The railroad also agreed to halt any genetic testing that may have been occurring at the company. While the result was overwhelmingly positive in that the EEOC achieved everything it sought in its lawsuit, by resolving the lawsuit informally, it was never necessary for the court to rule on the applicability of the ADA to the circumstances underlying the workers' complaints.
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What was particularly interesting about the Burlington Northern case was that no one, not the business community, the employer groups, the scientists, the press, the politicians, nor even the talking heads on cable news programs thought that the surreptitious genetic testing of employees and adverse actions against those who had the "wrong genetic marker" should have been allowed.

With advances in genetic technology, we will soon realize that everyone has genetic predispositions for one genetic condition or another. Mapping the human genome changes the way we understand who is "normal" and who is "disabled." If we all have genetic misspellings, how do we define who is healthy and who is not? If we all have genetic conditions that are just waiting to express themselves in the future, aren't we all truly disabled? As we will all have knowledge of the potential genetic disorder that we each harbor, disabled people may no longer remain stigmatized as "the other" in society.

It is important to note that genetic mutations are not themselves all bad?even those that cause a disorder. The same genetic code that causes sickle cell anemia when inherited from both parents also confers immunity to malaria when inherited from only one. In the past, biological imperatives determined the importance of particular genetic mutations. People either survived to pass on their genes to their children or they did not. Because of advances in medical care and in our understanding of the mechanics of heredity, biological imperatives are less important. It is society that imparts value to genetic diversity, and until now, society has generally assigned a negative value to those mutations, which in their expression diverge from the norm, however defined. What about those hid- den markers that we will now learn each of us harbors? Are we going to be willing to allow employers to assign a negative value to such genetic markers even if they have no effect on one's ability to do a job? Such actions should be called illegal discrimination.

QUESTIONS-PLEASE PROVIDE REFERENCES IF USED

1. Explain what is meant by Professor Miller's "the cruelest corruption of Darwin's theories" in the Carrie Buck story.

2. Identify "all" the stakeholders in the Burlington Railroad scenario.

3. Describe the ethical issues involved in the Burlington Railroad scenario.

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