Since the antigens are closely linked to race and ethnicity, it is much easier to find a biological match among people with similar ethnic and racial backgrounds than it is among any two randomly selected individuals. On the basis of tissue matching, organs from blacks will almost always go to blacks and organs from whites will almost always go to whites. Blacks, however, have a much higher incidence of kidney failure than whites. But since whites significantly outnumber blacks in the American population, there are still large numbers of whites waiting for organs. There are so many, in fact, that nearly every white donor is matched to a white recipient. Blacks and other minorities must rely on a much smaller pool of kidneys. The situation for potential black kidney transplant recipients is made even worse by the fact that blacks have a lower rate of cadaver organ donation than do whites. So there is a disproportionately small share of black cadaver kidneys available for a disproportionately large group of blacks in need of kidney transplants. By deciding to use biology in the name of efficiency and, it must be added, fairness, whites wind up with a much larger number of kidney transplants than do blacks relative to the incidence of renal failure in both groups. (Caplan, p. 33-34).
The HGP can impact race in a non-medical way as well. Currently, members of ethnic groups either self-identify or are identified by others due to physical markers or characteristics. For example, in America, a dark skinned person with certain features, such as thicker lips or kinky hair, is presumed by people to be African-American and is treated like an African-American, regardless of actual genetic heritage. However, people may actually not have the genetic heritage to support an existing racial or ethnic identity, which begs the question: “Should knowledge generated by the genome project be used to identify, classify, or label racial or ethnic groups or to establish the boundaries of their membership?” (Caplan, p.40). Furthermore, if people are screened or selected for race, should genetic/biological definitions be used or will cultural and political definitions prevail? (Caplan, p.40). If genetic definitions prevail, then it is likely that people who culturally identify with certain races will be excluded from those classifications because DNA studies have not revealed classifiable races in modern humans; though some alleles are more highly identified with certain subgroups of people, some members of those subgroups will not have those alleles, and some people outside of those subgroups will have those alleles.
The largest ethical issue related to the Human Genome Project is the looming specter of human cloning. While the cloning of an entire human being may be impossible anytime in the foreseeable future, and animal clones have repeatedly had some health issues that were not present in the original animal, the idea of human cloning is more of a grey area than opponents would have one believe. After all, cloning does not have to be of an entire person. In fact, proponents of cloning rarely suggest that one should clone an entire person. On the contrary, they suggest that cloning would be appropriate to replace single failed organs, because a cloned organ would not be rejected in the way that donor organs are rejected.
One interesting legal issue is whether the state could require or, conversely, prohibit certain types of genetic testing. For example, some genetic conditions make a person far more susceptible to certain disease; should the government be allowed to require people to get those tests? It is unlikely that the government would ever require every individual to submit to random genetic testing, but there are certainly situations where other stakeholders might want to insist upon mandatory testing. For example, the costs of preventative medicine are often considerably lower than the costs of treatment.
Therefore, it is imaginable that insurers might push for mandatory genetic testing, so that they could deny coverage to those who did not comply with preventative medical recommendations for certain conditions. It is conceivable, for example, that, if genetic testing were mandatory, an insurer could deny breast cancer treatment coverage for all females testing positive for the breast cancer gene who refused to undergo a preventative double mastectomy, even though not all people who carry the gene will develop breast cancer.
That is why so many people are worried about privacy and confidentiality information when discussing the Human Genome Project. The reality is that peoples insurance companies oftentimes have unfettered access to their health records. Moreover, people oftentimes are required by potential employers to waive privacy regarding their health records. The result is that some Americans are discriminated against in employment and insurance because of health conditions. When this discrimination occurs because of a manifested health condition, for example, cancer, it is a violation of the Americans with Disabilities Act. However, until May 21, 2008, employers and insurers could use information from genetic testing to discriminate against their employees or customers. On May 21, 2008, the Genetic Information Nondiscrimination Act was signed into law, and it prohibited insurance companies and employers from discriminating on the basis of information derived from genetic testing. However, like other prohibitive laws, the potential employee or insured retains the onus of proving discrimination, which can be a very difficult burden to meet. The ability to get early genetic testing without fearing negative consequences can be very important, because early detection can provide people with the opportunity to engage in preventative therapies, which may significantly delay, or even prevent, the onset of certain genetic-based diseases.
The Human Genome Project has offered unprecedented insight into human hereditary conditions, which can lead to preventative medicine saving and improving the quality of life of millions of individuals. However, that knowledge has not come without a cause. There are definite concerns associated with the project, but those concerns are not really about the Human Genome Project. The reality is that human beings have a history of ugly discrimination against people whom they perceive as alien or other.
The Human Genome Project has given that type of person another method by which to discriminate against others. However, those people would use other methods to discriminate, if given the chance. Is it not fair to assume that a person who would discriminate against a person because of genetic characteristics would also discriminate against them due to appearance? The problems associated with the Human Genome Project are not unique to that project, which is why society already has many of the tools it needs to deal with the new ways that those problems will undoubtedly manifest now that the project is complete.
Andrew, Lori. “Public Choices and Private Choices: Legal Regulation of Genetic Testing.”
Justice and the Human Genome Project. Ed. Timothy Murphy and Marc Lappe. Los Angeles: University of California Press, 1994, 46-75.
Caplan, Arthur. “Handle with Care: Race, Class, and Genetics.” Justice and the Human Genome Project. Ed. Timothy Murphy and Marc Lappe. Los Angeles:
University of California Press, 1994, 30-46.
Collins, Francis, Eric Green, Alan Guttmacher, and Mark Guyer. “A Vision for the Future of Genomics Research.” Nature 422 (2003), 835-847.
Kevles, Daniel. “Eugenics and the Human Genome Project: Is the Past Prologue?” Justice and the Human Genome Project. Ed. Timothy Murphy and Marc Lappe. Los Angeles:
University of California Press, 1994, 14-30.
National Human Genome Research Institute. “ELSI Research Program.” Genome.gov. 2008.
National Human Genome Research Institute. 17 Nov. 2008 http://genome.gov/10001618.
Pun, Pattle. “On Ethics: Toward an Ethics of the Human Genome Project.” Perspectives on Science and Christian Faith 50 (1998): 164-175.
Stein, Rob. “Fresh Hopes and Concerns as Fetal DNA.