Public Health Genomics - Ethical Concerns

Ethical Concerns

One of the many facets involved in Public Health Genomics is the ethical area. This has recently been highlighted in a study by Cogent Research (http://www.redorbit.com/news/display/?id=294054) that found when American citizens were asked what they thought the strongest drawback was in using genetic information, they listed "misuse of information/invasion of privacy" as the single most important problem. With such a large proportion of the population acknowledging this as a major pitfall, this must be one of the areas mediated in any discourse between the public and healthcare officials. Although no legislation has been passed limiting the use of genetic discrimination in individual’s insurance coverage or to genetic discrimination in the workplace, in 2000 President Bill Clinton signed an executive order banning federal agencies from using genetic information to discriminate against potential applicants. Furthermore, The Genetic Information Nondiscrimination Act of 2007 has passed the House of Representatives and is currently been referred to the Senate Committee on Health, Education, Labor, and Pensions (June, 2007). For up to date news visit the Genetics Privacy and Legislation homepage at "http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml".

In order for the information obtained to benefit the public health a number of key bioethical principles must be considered. Although the information will be beneficial to the public health, the role of the individual must not be forgotten. If it were not the for the information gleaned off of the individual, this discussion would probably not be taking place. Why would someone have a genetic test to tell them if they were going to come down with a disease that has no treatment? Some people would follow the utilitarian ideal and have the test to aid in the advancement of scientific technology so one day there might be a treatment. In order to afford this act some protection the individual must not become lost or sacrificed to the good of the populous.

The first principle that must be acknowledged is the respect for the person as an autonomous agent. If one acknowledges the individuals right to make the best choices for their healthcare, then that same acknowledgment should extend to the respect for their choices. Not only must the individual be respected, the amount of the other people affected by the situation should be maximized. Once this information has been obtained there needs to be a sense of confidentiality. This must be done in order to retain professional integrity and, therefore, lead to future gathering of information. Without the respect for the profession, the progression of the science will come to a halt. Finally, professionals dealing with this information must keep in mind the principles of beneficence and nonmaleficence. The principles of nonmaleficence and beneficence should also be applied according to distributive justice. That is we must not just focus on the utilitarian good that will come of this information. Instead we must keep in mind the Hippocratic Oath and try to maximize the benefit while minimizing the harm to all parties involved. Just because the potential benefit might be great does not mean that we should always proceed.

In 2003, the Nuffield Council on Bioethics published a report, "Pharmacogenetics: Ethical Issues" PDF (2.02 MiB). Authors of the document explore four broad categories of ethical and policy issues related to pharmacogenetics: information, resource, equity and control. In the introduction to the report, the authors clearly state that the development and application of pharmacogentics depend on scientific research, but that policy and administration must provide incentives and restraintsto ensure the most productive and just use of this technology .