The sequencing of the human genome has been compared to the first time man set foot on the moon and the detonation of the atomic bomb. Both of these events were huge, worldwide events that affected all human beings both for good and bad. Anything considered so important and so worldwide, is going to have strong affects that come with consequences. Sequencing the human genome has some potentially devastating consequences.
One of the first questions to ever come up when discussing the decoding of humans is of who will have access to this mass of information. The control of this knowledge is a deep concern for all of the world because your DNA is considered your most personal, most intimate piece of information. This is the information that tells what exactly makes us exactly who we are and all the aspects of us as human beings. Our genetic identities describe the course of our lives as far as our health will go. This knowledge has the potential to fall into the wrong hands and to get out of control. With the potential for new discoveries and research comes the potential for misuse and loss of privacy. Insurance companies already have access to our medical reports, which could soon include our genome sequence. Is this acceptable? Should insurance companies automatically have access to our genetic information? This access could very easily lead to either un-payable high rates or to refusal of coverage. What's to stop insurance companies from protecting their profits by not accepting people who will develop a serious illness during their lifetime? In an article discussing the prevention of genetic discrimination, Dr. Ted Peters stated, "The current structure seems to make it profitable for employers and insurance carriers to discriminate against individuals with certain genetic configurations-that is, it is in their best financial interest to limit or even deny health care."(1) At the moment, there are not many laws preventing insurance companies from discriminating based on genetic information. The few laws that exist do not prevent discrimination based on genetic information obtained from phenotypes, family history, or medical records. Private sector employer-sponsored health plans are also exempt from state insurance laws. Almost half of the population who has insurance has this type of insurance. (2) This means that most people are not protected by the few laws that attempt to protect people from insurance discrimination.
While the thought of not being able to be insured
because of the genes you are made of is disturbing, the idea that
genetic discrimination could become a common part of our society
is even more disturbing. Imagine not being able to get a job or
buy a home or find a mate because your DNA sequence has shown
that you will develop a disease that will eventually be terminal.
From the beginning you have no chance to make it in society:
"In the near future a fetus will be tested for genetic purity
and thousands denied medical coverage before they are born into
this world. This genetic scarlet letter will follow them the rest
of their natural lives. Workers will be denied promotions, advancement
or special assignments due to a genetic file that indicates your
future medical outlook. Thousands of potential employees will
be denied hiring due to genetic factors deemed burdensome to corporations
enslaved to the bottom line. These genetic factors will have nothing
to do with their qualifications for a job, promotion, advancement,
or other work-related opportunities. Genetic testing is bound
to become a high-tech excuse to save money by cutting off employees
before expensive retirement plans and medical insurance is established."
Mark Antony Rossi (3)
The potential for genetic discrimination to become a new and terrible
force in the world is much too high. Genetic discrimination can
be compared to Hitler's discrimination in Germany. It is essentially
the same concept. This discrimination can occur even when parents
decide to have children. The potential for "designer babies"
is another threat we face. Will parents choose the sex of their
babies, the color of their eyes and hair?
The concept of knowing one's fate before it occurs is another controversial issue that arises with human genome sequencing. With sequencing it is possible to know what diseases one might carry and develop throughout life as well as whether one is a carrier for disease or not. This knowledge would greatly affect the lives of people all over the world. Couples considering having children could consider whether they carry genes for a fatal disease before they decide whether or not to have children. Knowing you were going to develop a fatal disease would have endless psychological affects as well. This could include survivor guilt or resentment towards the attention received by siblings. (4) There is great potential for psychological damage linked with knowing one's fate from the beginning. This would prove to be quite harmful to all of the world's population.
While the vast amounts of knowledge can be obtained from sequencing human genomes, the issues of control and privacy create many reasons to be weary of this research. Many harmful consequences are likely to occur without extreme regulation of the information obtained, and unfortunately this type of regulation is nearly impossible.
1. Peters, Dr. Ted. "Preventing Genetic Discrimination."
Genetics: http://www.counterbalance.org/genetics/ctrl-frame.html.
2. Department of Health and Humans, "Health Insurance in
the age of Genetics." The National Human Genome Research
Institute. July, 1997: http://www.nhgri.gov/NEWS/insurance/.
3. Rossi, Mark Antony. "The Specter of Genetic Discrimination."
BioWorldWatch.: http://www.bioworldwatch.com/article1004.html.
4. Vastag, Brian. "Experts Wrestle With Social, Ethical Implications
of Human Genome Research." JAMA: The Journal of the American
Medical Association. 14 February, 2001: vol 285 i6, p721.
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"The Specter of Genetic Discrimination"--Bio World Watch "Genetic Engineering Series"--The Turning Point Project "Experts Wrestle With Social, Ethical Implications of Human Genome Research"--The Journal of the American Medical Association "Ethical Concerns"--World Book Encyclopedia |
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Council for Responsible Genetics--The Council for Responsible Genetics (CRG) encourages informed public debate about the social, ethical, and environmental implications of new genetic technologies, and advocates for socially responsible use of these technologies. National Human Genome Research Institute--Official government site for Human Genome research ELSI --Ethical, Legal, and Social Implications of Human Genetics Research--Created by the Human Genome Project to adress issues that arise around the project |
