Tonight we heard about genetics and popular culture. Genetics is unlike much of the rest of science in that it has become of considerable interest to the general public. The fascination with genetics, genomics, and the power of genetic engineering has only increased over the last half century, since Watson and Crick made their discovery in 1953. Since that time, the public’s views, hopes, and fears of genetics and its potentials have developed and presented themselves in art, television, movies, books, and in almost every aspect of popular culture.
We can see genetics everywhere, represented sometimes factually, but often with mistakes or just fantasy. These mistakes and misrepresentations, though not accurate, sound good and may be convincing to most of us who are not trained in genetics. Although fiction is just that, these misunderstandings can cause problems and bring up questions for science and medicine. Dr. Wayne Grody mentioned the increased demand for genetic evidence jurors sometimes display after seeing shows like CSI, in which genetic evidence is omnipresent and in good, useable condition. Unrealistic expectations like these, brought on by fiction, may have a great impact on how we perceive genetic technology.
Another complicating factor is the political nature of genetic questions. Dr. Priscilla Wald mentioned that at the heart of TV shows and movies is always narrative. Narrative has the ability to pose arguments or bias viewers based on the not-always-correct “facts” presented. These subtle influences may lead the us, the public, in making decisions or opinions about various genetic tests, treatments and technologies that are not supported by the facts.
It is undeniable that genetics is an important part of our society and it is likely that it will continue to be an important framework and tool for us in the future. With the increasing exposure of genetics to popular culture, we may see more and more questions arise. Although we may not always find the answers to these questions, discussing them will lead us to a better understanding of the issues and how we might anticipate and prevent problems in the future. That said, we invite you to continue the discussion on “What’s popular about genetics.”
Parth
IHC Facilitator
February 2, 2007 at 12:41 pm
DNA Testing in Employment: Useful Tool or Evil Genie?
In the employment office of a major airline a seasoned military fighter pilot is being interviewed for a job as a pilot. He sips on a steaming styrofoam cup of coffee as the recruiter leads him through a series of routine questions that are the first stage in the application process. As an accomplished pilot with over 8,000 hours of flight time, he is eminently qualified for the position.
Later, company medical technicians lift a sample of the applicant’s DNA from the lip of the styrofoam cup. DNA testing of the sample conclusively shows the pilot has a genetic pre-disposition for coronary heart disease that could result in a fatal heart attack. In the interest of passenger safety the pilot is turned down for the job.
While this scenario is only hypothetical, we have seen other examples that reveal the benefits and expose the dangers of DNA testing by employers. Before he was traded, basketball star Eddy Curry faced a demand from the Chicago Bulls that he submit to a DNA test. The team wanted to know if his enlarged heart was the result of athletic training or a sign of something more ominous – a genetic disease.
Curry refused, arguing that the Bulls were invading his privacy. He said his doctor told him he was fit to play and that was good enough for him. Subsequently, he was traded to the New York Knicks, where he was signed without being required to take the test.
Several years ago the Equal Employment Opportunity Commission (EEOC) sued Burlington Northern Santa Fe railway to end the company’s genetic testing of employees who filed claims for work-related injuries based on carpal tunnel syndrome. The Commission argued the company’s program violated the Americans with Disabilities Act’s (ADA’s) protection of individuals “regarded as” disabled from discrimination. The case was later settled with the railroad agreeing to discontinue its program of testing certain employees for a genetic marker that signals a vulnerability to carpel tunnel.
DNA testing has become increasingly common in our society since the project to map the human genome bore fruit. Scores of genetic tests are available in the marketplace, including a wide variety of products available on-line that offer testing for diagnostic purposes, for the design of pharmaco-genetic designer drugs, and even for tracking family genealogy from genetic tests.
Moreover, DNA testing is everywhere in our popular culture as well. It all started with the sensational media coverage of DNA science in the unsuccessful prosecution of O.J. Simpson. Today, DNA testing is the darling of a wide variety of prime-time crime shows. DNA matches are a key part of the story-line for CSI Miami, CSI New York, NCIS, and every other clone of the blockbuster success of crime scene investigation dramas. A major crime is solved through a combination of DNA testing/matching, powerful computer manipulation of data, some satellite tracking thrown in for good measure, and a sexy/quirky detective/medical technician “connecting all the dots” to identify the killer and solve the crime.
Without doubt, DNA testing is a powerful tool. Use of DNA data is still in its infancy. Most Americans want law enforcement and homeland security officials to be able to use it with few, if any, limitations. But, Americans are rightly concerned that the tool might be used to discriminate against them in employment, group health insurance, life insurance, and so on.
Existing federal laws and many state laws protect against abusive use of DNA testing. For example, Executive Order 13145 protects all federal employees from discrimination based on genetic information. Additionally, the EEOC has taken the position that genetic testing is subject to the prohibitions contained in the Americans with Disabilities Act. Also, a total of 32 states have passed laws safeguarding the privacy of genetic information, 34 states prohibit employment discrimination based on genetic information, and 45 states restrict in various ways the use of genetic information in health insurance.
Illinois was a leader in this regard with the passage of the Genetic Information Privacy Act which became law in 1998 and bars the use of genetic testing information for insurance purposes as well as protecting the confidentiality of the results of DNA testing which is done lawfully. Additionally, the Illinois statute provides that an employer must treat genetic testing information in a manner that is consistent with the requirements of federal law, including the ADA.
Despite the existing protections of federal and state law, Congress is currently considering a broad bill aimed at prohibiting employers from using predictive genetic tests in “hiring, firing, or promotions”. The proposed law exempts genetic tests used for wellness programs or to monitor employees’ health under hazardous working conditions.
The bill easily was approved on two occasions by the Senate, in 2004 and in February 2005, but stalled in the House. With Democrats now in control of Congress, supporters of the bill have expressed optimism that it will be approved this year.
The science of DNA is endlessly fascinating and holds enormous promise for the diagnosis of disease, custom-designing treatment programs, and ultimately for the cure of such diseases as cancer, Alzheimer’s, diabetes, heart-disease and many others. Misuse of the science carries the threat of discrimination in employment and insurance and erosion of the right to privacy of the most intimate information about our lives.
Striking a proper balance between these divergent interests will present challenges for years to come. Legal safeguards for the use of DNA testing are as essential and complex as the science itself.
February 1, 2005
February 2, 2007 at 10:20 pm
Thank you for that informative post!
The issue of genetic testing for insurance and employment purposes is certainly an interesting one – and an important area of discussion, as it will likely continue to be an area of great contention in the near future.
Insurance companies require health tests and take family histories as a matter of routine. This is testing heredity, albeit less directly than a genetic test. We have no moral objection to, say, an insurance company charging a higher premium for a person with a strong family history of heart, disease, for example. If it is found that there are genetic markers that indicate a strong likelihood for heart disease, on what basis can we say reject the use of that information? It seems to serve the same purpose for the insurance companies (calculating risk of heart disease) – why shouldn’t they use that information to determine coverage, as they do other information. What is it about genetic information that we find so dangerous? It’s true that a genetic predisposition does not guarantee that a person will have a condition, but neither does family history – yet we allow that information to be used liberally.
In your example of the pilot applying for a position, if the genetic tests did reveal an abnormality or the predisposition for an abnormality that could cause an acute cardiac event leading to the incapacitation of the pilot (and thus, potentially the loss of many lives on a plane) isn’t it a good thing that he a) isn’t given the job and b) informed of this predisposition so he can protect himself and potential passengers by not piloting aircraft?
If genetic information proves to be as reliable as some people are saying, then its use could be considered a boon and put to great use. If, however, the information is not that accurate or predictive, then its use may be of less value. However, it seems that for now, we must allow for the fact that genetic information is just like any information, the user of which must determine how much credibility to give it and which decisions to make because of it.
Thanks for the contribution – thoughts anyone?
February 4, 2007 at 10:03 am
The challenges of genetic testing — What does it mean? Who has rights to the information? What are the implications of knowing one’s status with regard to a potential disease? — are undoubtedly questions that are not going away anytime soon. Yet perhaps one of the most interesting ways of considering these issues is that of the perspective used to frame the conversation last Thursday evening: What’s Popular About Genetics? For better or for worse, portrayals of genetic science in the popular media may be the information source from which many people draw their opinions concerning the possibilities, both good and bad, which flow from our increasing scientific knowledge. In this light, then, what are the long-term implications for our ability to manage the very real policy issues associated with genetic information if CSI or Law and Order or a Michael Crichton best-seller are a major source of information for many people?
There is nothing wrong with entertainment — who doesn’t enjoy a good who-done-it mystery — and since pop culture always reflects the affairs and concerns of socienty, the use of DNA forensics to solve a crime or genetic discrimination in the workplace should be expected topics for TV shows, movies, and books. These issues are part of our lives in 2007. But what does this mean for debates about capital punishment and DNA exoneration of far too many people on death row; about the genetic testing/discrimination scenario detailed in the previous blog entry; about the ability of a parent to perform genetic testing for a gene linked to cancer in a 5 year-old? Does anyone need to be accountable for the accuracy of scientific information presented in the pop media if that information will influence our public policy when it comes to genetics? Do scientists have a responsibility to society beyond their work in the lab?
April 15, 2009 at 5:51 am
Hey, nice tips. Perhaps I’ll buy a glass of beer to the person from that forum who told me to visit your site