Nursing ethics principles and practice

¶ … Human Genome Project and its impact implications on the ethics of genetic engineering. The writer examines the project, the genetic engineering question and provides personal beliefs to the overall picture.

ETHICS WILL REMAIN IN PLACE WITH HUMAN GENOME PROJECT

Recent advances in the field of medical science have taken mankind to heights never before imagined. Today, the life span of the average person is not only longer than ever before, but the quality of life and standard of living has also increased significantly in those later years. Years ago, on a show called Star Wars the doctor aboard the Enterprise was able to genetically alter human parts and make new ones if needed to save the life of the patient. It was science fiction at its best but not something the world believed was possible. The past few years have seen a shift in thinking with regard to genetic engineering and its possibilities. The question now is not if but when and it has sparked heated debates throughout the world. The advances of medical technology combined with the newfound abilities in the genetic engineering field have placed man at the brink of perhaps the biggest decision in world history, whether or not to move forward.

As the Human Genome Project gets fully underway, the question of medical ethics moves to the forefront of discussion.

When the question of the Human Genome Project impacting the genetic science field in the area of ethics arises the answer is not difficult. While there have always been and will always be unethical people in the world, this project is going to provide so much positive for society that the few unethical minds that may enter the picture will quickly be identified and blocked from doing anything evil with the technology. Good has always outshined evil in the world because people are basically good. The same principle will apply with regards to the impact that the Human Genome Project will have on the ethics of genetic engineering.

THE PROJECT

Before one can begin to form an opinion on whether the Human Genome Project will have a negative impact on the ethics of genetic engineering, one should have a basic understanding of the Human Genome Project and what it stands for.

The Human Genome Project (HGP) is an international project to sequence and map the human genome as well as to document humanity's genetic resources (Tauer, 2001)."

As it moves forward, scientists and medical personnel agree that it has the potential to have a significant impact on public health issues as well as human rights because of its ability to create an inequality in society at its very foundation.

A genome is an organism's entire genetic material and the human genome is specifically all of the genetic information of the entire human race. The HGP is therefore an effort to decode the entire genetic make-up of human beings. Once the HGP is complete and the genome is mapped, sequenced and identified, individual genetic compositions will be knowable. The questions then become: who is entitled to this information, how will this information be used against individuals, and most importantly, will the use of this information violate their human rights (Tauer, 2001)?"

The debater began to rage in 1997 when the United Nations addressed it through its Educational and Scientific Organization.

The HGP is a project in which the most developed and advanced scientific minds in the world are working together as a team to answer the question. For the purpose of this project, there are no cultural or military or power barriers. It is a joint project with the finest and brightest medical scientists on earth collaborating to answer the most complex question about humanity. What is the complete genetic code?

The HGP began in 1988 and is the result of three individuals who independently and publicly proposed to sequence the entire human genome. Robert Sinsheimer, the Chancellor of the University of California of Santa Cruz (UCSC), planted the idea of sequencing the human genome, although it did not succeed in attracting money for a genome research institute on the campus of UCSC (Tauer, 2001). Renato Dulbecco of the Salk Institute, a Nobel Prize winning molecular biologist, was the first to expose his ideas publicly and gave impetus to the idea's third independent origin (Tauer, 2001). Charles DeLisi, who knew of neither the Santa Cruz workshop nor Dulbecco's lectures, conceived of a concerted effort to sequence the human genome under the aegis of the Department of Energy (Tauer, 2001)."

The project is the attempt to map the genetic makeup of the human body and once the mapping is complete the world will understand with clarity how people are put together which opens the door to answering every disorder, genetic mutation and deformity question that has ever been asked.

The HGP began as a quest to find answers for four thousand diseases. Scientists answered that question and can now predict with incredible accuracy who will and who will not eventually contract them.

This first step in the path of the HGP already caused a stir, when insurance companies began to deny coverage for those who tested positive for having a gene that might cause them to develop a disease later in their life. In addition, it raised the question of whether insurance companies would eventually begin denying coverage to any children born of those who tested positive for the gene in one of those 4,000 diseases as they may marry someone who also carried the gene thereby risking that their future children might get the disease in question.

While this ethic issue began to surface however, the people who were responsible for HGP promoted the benefits of being able to map the sequences through the understanding that it will help in several areas of the field of medicine.

The three major benefits to HGP include:

The ability to screen for genetic disorders;

The ability to provide possible predictions of the onset of certain diseases or behavioral disorders;

The ability to be able to eventually eradicate unwanted genetic disorders through the use of gene therapies (Tauer, 2001)."

The question of ethics has been raised in that concerned citizens believe that the technology is going to provide a threat to public safety as people discover whether or not they carry the gene for certain diseases. Does it mean one can be diagnosed as a child to grow up as a serial killer or a paranoid schizophrenic? What about child molesters, will it eventually locate a biological cause for that and then push to identify them before they are out of diapers? The entire question of the right to privacy and an equal society is under scrutiny with the seeming abilities of the Human Genome Project.

Congress has grappled with the question and decided the risk is worth the benefit of answering the question. After much discussion Congress named five key elements that continuing with the Human Genome Project will provide. They include:

The information in a genome is the fundamental description of a living system so is of fundamental concern to biologists (Tauer, 2001).

Genome sequences provide a conceptual framework within which much future research in biology will be structured [such as]... control of gene expression (Tauer, 2001).

Nearly 90% of total DNA content [is likely to have no function]... Without a complete DNA sequence of several genomes, it will be impossible to determine whether such sequences have meaning or are "ancestral" junk sequences (Tauer, 2001).

Genome sequences are important for addressing questions concerning evolutionary biology. The reconstruction of the history of life on this planet, the definition of gene families... And the search for a universal ancestor all require an understanding of the organization of genomes (Tauer, 2001)."

Genomes are natural information storage and processing systems; unraveling them may be of general interest to computer and physical scientists (Tauer, 2001)."

THE QUESTION OF ETHICS

There are several safe guard features to the HGP that will prevent it from allowing unethical genetic engineering practices in the future.

The first element that will prevent its use for unethical practice is the fact that it will not be able to predict with certainty who will and who won't contract a disease..Even with the ability to know who has the disease gene, scientists warn the world that it is not going to be a magic or crystal ball. Genes are only one part of the disease world. It also includes environment, parent's genetic make-up, care one takes of oneself and many other factors.

In addition the basic good of mankind will create a checks and balances system by which any attempt at unethical use of the HGP abilities and information will quickly be brought to light and dealt with.

There are some potential social implications with the results of the HGP and those who are against continuing the project point to those implications as reason to stop moving forward.

Some of those concerns include the possibility of:

Individual propensities to contract diseases, with varying degrees of medical, therapy available to moderate or overcome any such disease (Tauer, 2001),

An individual's status as a carrier of harmful or defective genes, even though not personally affected (Tauer, 2001),

An individual's propensity to engage in anti-social behavior, based on theories of inherited characteristics having effects independent of nurture or environment (Tauer, 2001),

An individual's likelihood of having various exceptional abilities based on theories of superior inherited mental or artistic talents (Tauer, 2001)."

The ethical concerns about the ability to obtain this information revolve around the possibility of discrimination against people who have less than superior gene pools and that those people will be shunned from society, or worse yet, rounded up and locked up before they have ever done anything wrong.

In addition there is also the concern that the wealthy will be able to genetically order perfect children with the highest IQ's the healthiest DNA and the best looks, while those who are not wealthy will have children the old fashioned way and there will be an eventual class distinction between the children who have been genetically ordered and those who are a toss of the dice.

The other ethical issue involves a perceived right to privacy. The recent health care privacy act has worked to further protect a person's right to decide who has information about him and why it will be shared. If the HGP completes its goal there is a chance that people will lose that right to privacy as leaks and hacking ability extracts it for a fee.

The topic and concerns regarding the HGP is a human rights issue because once the mapping is complete it will detail all of mankind and there will be no going back in time to undue the abilities that the HGP will provide.

The question of ethics can also be held against several ethic theories including the Deontological Ethical Theory that in short states as long as one is following the basic preset principles or elements of that theory one is being ethical. In the case of HGP as long as nurses and other medical professionals only use the HGP information to provide the best care possible both during crisis and as a preventative measure then they are behaving ethically.

Immanuel Kant believed in the basic good of people when he theorized that there is a sense in each person that will cause them for the most part to choose the ethical path.

When and if the time comes that some decide to use HGP information in an unethical genetic engineering manner the Theory of Justice will prevail. The Theory of Justice believes that each and every person is entitled to identical rights and privacies. This theory is so strongly supported by the free world that there have been many wars to ensure its implementation and maintenance.

If and when the time comes that a few unethical minds decide to take advantage of HGP and its abilities the world will block that effort and demand the theory of justice be followed, including the implementation of legislation to insure that it is.