The Right to Know Genetic Information

The Right to Know Genetic Information

After forthy-seven year old Mimi Joling found out her forty-eight year old sister was diagnosed with breast cancer, she decided to get genetically tested. Joling wanted to know more about her risks and the options available to help prevent herself from getting cancer. "I thought for sure that I would be negative. But then, when I found out I tested positive for the gene mutation, I was totally shocked. I started crying, and it was really emotional," Joling remembers. After finding out her diagnosis she attended a two hour long genetic counseling session where she learned what the BRCA 1 mutation was, the possible risks, and recommendations in preventing cancer. "After I had a few days to absorb my results I realized this was a good thing for me to know. The counseling provided me with information on all the options available, and I decided my course of action was to have my ovaries removed," said Joling (Women's Health Weekly 27-29).

As with almost any new technology, the Human Genome Project has provided society with benefits and problems from its findings. It has given people the opportunity to identify whether or not they are carriers of disease causing gene patterns, like Mimi did. This enables the possible prevention if the likelihood of a certain disease is known. On the other hand, this type of information frightens people because they do not know

what it means. The identification of one of these gene patterns does not mean the person has the disease, but rather are at higher risk of the disease forming. Unfortunately, due to a lack of knowledge, some individuals may make irrational choices, like committing suicide, because they think they will inevitably suffer and die of the disease that they are only a carrier for. This situation gives rise to the debate of whether or not it is ethical for professionals to withhold genetic information in fear of the individuals involved making irrational decisions. These irrational decisions occur because the individuals believe they already are or will soon be infected. With proper knowledge this information can be used in a positive way by disease prevention, like it was for Mimi Joling in the story above.

The Human Genome Project is a frequent subject on the media, and people become misinformed. Some truths are taken out of proportion to the point where some believe that genetics is the all out answer to health. While genetics may play a part in health, environment and habits play a larger role. Society first must learn that genetics is not the ultimate determiner in life. A genetic counselor can educate individuals who are getting genetically screened. A counselor can also provide possible options in preventing the marker from turning into a genetic disease. The better informed a person is about his or her situation, the better prepared he or she will be to make rational decisions. It is the doctor's duty to the patient to give him/her all the information of his/her health. It is unethical for professionals to withhold genetic information from their patients. The worry of individuals making irrational choices after hearing screening results would not be nearly as great if they are fully informed and have the support genetic counselors would provide. For this reason, genetic counseling should become a mandatory part of

getting genetically screened. This information contributes to more positive outcomes which would end the unethical withholding of information due to the worrying of irrational decisions.

Genetic research is still fairly new and there is a lot undiscovered. Out of an estimated 100,000 genes hidden in each nucleus, only about two-hundred have been identified (Consumer Reports 483). These genes include those of Huntington's disease and cystic fibrosis. Genetic screening is most commonly done on fetuses to detect phenylketonuria (PKU), Down's syndrome, sickle cell anemia, and other genetic diseases. There is not a cure for any of these diseases. There is only the prevention of mental retardation through a special diet for children with PKU. The only choices parents would have whose child tested positive for any diseases would be to keep the baby, or abort it. It can also be a deciding factor in family planning. In this case, prevention means not producing offspring to pass on genetic disease (Angier 87). As I mentioned earlier, women are also commonly screened for BRCA 1 and BRCA 2, mutations correlated with breast and ovarian cancers. The intent of this screening is to give women a warning that they are at high risk if they carry this mutation so they can take preventive measures such has taking certain medication and/or undergoing surgery "to remove their breasts or ovaries before a cancer diagnosis" (Women's Health Weekly p29). Although it is known where some genes are located, the goal has not been reached for finding cures for these genetic diseases. Genetic screening can only give information of a strong possibility of a disease forming.

With the current research of genetics come partial truths and exaggerations. C. Keith Boone calls these partial truths "bad axioms." One that he mentions confronts the belief that genetics is the answer to every biological problem (Pence 321). When genetic research began in the 1970s, some took these technologies "as the long-awaited solutions to perennial human problems and aspirations" (Wbmd.com). This is not all false, but it is only partially true. Genetics is actually only a fraction of the answer. The causes of diseases, like cancer, are actually more complicated because they involve a series of agents such as occupation and household environment (doegenomes.org). As Robert N. Proctor points out, although genetics shows some correlation, it is not the ultimate determiner of health. He goes on to mention the dangers of seeing genes as "a near-universal scapegoat for all that ails the human species" (New York Times 1991 42). This is because environmental factors are what ultimately provoke diseases. The New York Times has reported that poverty, not genes, is blamed for African-Americans' high cancer rate (Angier 1). The paper also reports that chemicals in cigarettes switch on a gene in lung cells that cause cancer (Angier 1). In both these cases it is less nature and more nurture that cause cancer. I also agree with Proctor in concluding that environmental changes are to blame in the 420 percent rise in lung cancer among women (Pence 343). I do not think the general public is aware that