The Human Genome Project
The Human Genome Project (HGP) began with a very ambitious goal, which was “to map and sequence the entire human genome--some 3 billion base pairs that make up approximately 80-100,000 genes--and the genomes of related model organisms by the year 2005” (Meslin, Thomson, & Boyer 1997, p. 291). Though the technology to complete the project did not yet exist at the time of its beginning, technology rapidly advanced which allowed its initial goals to be completed in 2003 (“About” 2011, para. 1). The ethical, legal, and social implications of the HGP are of great concern. The advances possible bring into question how what people have learned from the HGP can be used, as well as what should be illegal or what is unethical.
A major social, legal, and ethical issue concerning people about genetic research is discrimination based on genetics. One scenario that is an example of discrimination would be if insurance companies required all possible customers to submit a tissue sample for genetic analysis before providing coverage. In this scenario, a healthy 25 year old female submits her tissue sample, but is denied coverage because her genetic sample shows that she is predisposed to diabetes. Even though she does not currently have diabetes, is in good shape, eats nutritional meals, and is not overweight, the insurance company tells her they cannot take the risk of covering her. Another insurance company she applies to tells her that they will cover her, but because of her gene sample, she will have to pay higher premiums than other customers do.
In another scenario, a young male college graduate applies for a job which requires him to submit to a full medical examination, including genetic testing, before he can be hired. A week later, the company’s Human Resources department calls him to let him know he did not get the job. The person he talks to says, “It’s a shame, I thought you were really great, but your gene test came back and it shows that you have a predisposition for colon cancer. We can’t hire people with that because it drives our insurance and other costs up, but maybe this was a good thing for you. Now you know and you didn’t even pay to have the test.” The Human Resource employee’s words are little consolation to the man who did not get the job. Although the Genetic Information Nondiscrimination Act (GINA) was signed into law in 1998, “which prohibits U.S. insurance companies and employers from discriminating on the basis of information derived from genetic tests,” people are still concerned about this issue and how genetic information can be used (“Genetics Privacy” 2008, para. 1).
Another ethical, legal, and social issue regards the ownership of genetic information. Although it seems like common sense for people to “own” the genes they have inherited, some have found that it is not quite the case. For example, when Gena Girard received a positive test for the BCRA gene, one that shows an increased risk for ovarian and breast cancer, “she sought a second opinion, [but] she was surprised to learn that no one could give her one, because the gene is patented. The company that holds the patent, Myriad Genetics, administers the test and limits its use by anyone else” (Field 2010, para. 1). Companies want to defend patenting of genes because they “feel that they should own the information that they discover. They argue that without this reward, they could not afford to commit the resources needed to make these discoveries” (Field 2012, para. 4).
Lawsuits concerning gene ownership have been struck down in court, but companies continue to appeal. As of March in this year, the Supreme Court has taken the case versus Myriad Genetics in order to assess whether the rulings striking down patenting of genes is legal. The original suit “argued that human genes could not be patented because they were products of nature, and that Myriad’s monopoly on testing for mutations in those genes raised medical costs and prevented women from getting a second, confirmatory test” (Pollack 2012, para. 5). The Supreme Court’s ruling will have an important effect on the future of genetic testing because it will be a step in determining who owns the genetic information.
Prenatal genetic testing is another legal, ethical, and social issue. Advances in technology have given researchers, doctors, and parents a lot of enthusiasm about the possibilities concerning prenatal genetic testing. For example, if parents carry genes for Tay-Sachs disease, embryos can be tested for it and those that do not carry the gene can be implanted in the uterus through in vitro fertilization (Huckenberry n.d.). The March of Dimes did a survey of parents, and found that 50 percent of them would alter their child prenatally with genes to enhance mental or physical attributes if they could (Huckenberry n.d.). However, the dilemma occurs because testing is very expensive, and it is likely that future treatments developed for prenatal testing and gene therapy will continue to be expensive. This means that it is possible that only the wealthy few will be able to afford it, increasing the gap between the haves and have-nots. Even if the technology to prenatally select genetic attributes were affordable to all, the ethical question would still arise of whether or not it is right to do. Some people would easily accept the idea, whereas others would prefer not to for philosophical, religious, or other reasons.
The HGP brings forth the opportunity for great advancements in understanding humanity and medical treatment of a variety of problems. However, with this technology comes a variety of unknown ethical and legal territory that could have a large impact on everyone. The issues mentioned so far, such as genetic discrimination, ownership of genetic material, and prenatal testing are only a few of the ethical, legal, and social debates currently being argued over in the media, courtrooms, classrooms, and research centers. It is important to keep the debates over how the HGP will be used as the technology it helps to create continues to advance.
References
Field, Robert (15 Sep 2010). Who Owns Your Genes? Phili.com. Retrieved from http://www.philly.com/philly/blogs/healthcare/Who_Owns_Your_Genes.html
Huckenberry, John (n.d.). Prenatal Testing: A Modern Eugenics?
The DNA Files. Retrieved from http://www.ornl.gov/sci/techresources/Human_Genome/publicat/
dnafiles/PrenatalGeneticTesting6.ram
Meslin, Eric M., Thomson, Elizabeth J., & Boyer, Joy T. (1997). Bioethics Inside the Beltway: The Ethical, Legal, and Social Implications Research Program at the National Human Genome Research Institute. Kennedy Institute of Ethics Journal 7(3), p. 291-298.
Pollack, Andrew (26 Mar 2012). Justices Send Back Gene Case. The New York Times. Retrieved from http://www.nytimes.com/2012/03/27/business/high-court-orders-new-look-at-gene-patents.html?_r=0
U.S. Department of Energy (24 Aug 2011). Genetics Privacy and Legislation. Human Genome Project Information. Retrieved 6 Sep 2012 from http://www.ornl.gov/sci/techresources/
Human_Genome/elsi/legislat.shtml
U.S. Department of Energy (24 Aug 2011). Ethical, Legal, and Social Issues. Human Genome Project Information. Retrieved 6 Sep 2012 from http://www.ornl.gov/sci/techresources/
Human_Genome/elsi/elsi.shtml
