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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 other factors are more important than genetics. The overestimation of genetic research, an area where there is much more to learn about, has lead people to believe having a genetic marker is predestination.

This lack of understanding is what frightens them and leads them to make poorly thought out choices. Genetic counselors greatly aid in preventing these misunderstandings. What people do not know scares them. Patients can learn the facts through genetic counseling. This would make them less frightened and less likely to make harmful and irrational choices. The decrease of these instances and better understanding on the patient’s behalf would allow doctor’s to provide deserved information to their patients without second thoughts.

The point of giving them detailed information, and the point of genetic screening, is to help prevent future suffering. It is the professional’s duty to make sure this happens. They do this by not withholding any information from the patient. At the same time it is just as unethical not to explain what the information means as it is to withhold information. What the patient decides to do after that is his or her choice. Once it is understood that the individual is not infected with a disease, but there is only a chance of it forming, I believe there is a lesser chance of suicide or other irrational decisions being made.

The goal here is to use this information to improve the chances of a longer and healthy life. Professionals in the medical field should want this for their patients because this is their duty. The patient also has a right to know or not to know his or her genetic information. They should also be asked first if they would even like to be tested. Dr. Mark I. Evans, director of reproductive genetics at Hutzel Hospital in Detroit, a large referral center, told Consumer Reports obstetricians who perform amniocentesis spend meager time on counseling and education for the patients (Diaz 46).

Some of them don’t even know they are being tested until an abnormality is found; this causes needless worry (Gene-watch. org). The only exception of withholding information is if the professional knows for a fact that the individual will commit suicide. Many times though, a professional will not be able to tell, but professionals should still do their duty and give the all the information. As with any other tragic incidences in life, some individuals have severe reactions. What is important is that the doctors and genetic counselors do their part in informing and preparing patients for possible disturbing news.

That is the best they can do. As for the patients, that is the risk they take in getting genetically screened. The need to address another situation where some may feel is also an exception. This situation deals with the possible termination of a birth. Professionals should not let their moral beliefs interfere with such a highly debated subject. Only in dealing with genetic diseases, parents have the right to know and they have the choice of aborting their child. The line is drawn between superficial genetic information and physically harming genetic information.

Physical genetic information and genotype is fair to withhold. The genetic screening of fetuses has lead to a 90 percent drop of Tay-Sachs disease among Jews in Canada and the U. S. (Pence 84). This is not to say that abortion is bound to happen. In one study, the majority of couples with one child already infected with cystic fibrosis turned down amniocentesis in following pregnancies. “Of those who chose it, fewer than half elected to have an abortion” (Pence 52). Being discriminated against may be another reason individuals become frightened by their genetic information.

The right of knowing genetic information should be limited patient because of this. In a day in age where it’s difficult enough to get good health insurance, genetics should not be a factor. To use genetics as a basis is determining eligibility for health insurance is the same as using race as a basis. Both are unjust because you cannot control what genes you are born with, nor can you control the color of your skin. Candidates for genetic screening should not be worried about this either. Their genetic counselors should inform them of the Genetics Discrimination Legislation.

Because genetics discrimination is fairly new, some legislation in some states against genetic discrimination have been made, but not enough to protect everyone. The good news is that the government is funding ethics research of the Human Genome Project through the National Institutes of Health and the U. S. Department of Energy (www. doegenomes. org). A media group called the Council for Responsible Genetics also protects against discrimination in the workplace and discrimination from insurance by pushing congress to pass genetic discrimination laws (www. gene-watch. rg). Being informed of this important, though sometimes overlooked, matter aids in the awareness of the patient and lessens worry and fear. It is unethical for health professionals to withhold genetic information from individuals involved because in the end they are only possibly hurting the patient.

The debated reason for professionals to withhold this type of information is because the individuals involved do not fully understand what the genetic information does and does not mean, and this could lead them to make poorly though out decisions. It is unethical o give genetic information without also giving the proper knowledge because it would cause the patient to think irrationally. Effective genetic counseling should be mandatory with genetic screening because of this reason. The more the patient knows about his or her situation, the more rationally he or she will think. Providing the detailed information, and not withholding anything from the patient, is the doctor’s and genetic counselor’s duty to the patient. The intent of all this is to lead to positive outcomes by taking measures to prevent the genetic diseases at hand.

Individuals getting genetically screened should also receive information about the rising problem of genetic discrimination. This might be another possible reason for irrational decisions through grief. Genetic counselors should provide patients with their rights and information of who to contact if they feel their rights have been violated on a genetic basis. All of the necessary information should actually give genetic screening a positive connotation and extremely beneficial in preventing serious illnesses.

Patients have the right to know their own genetic information. Once this is known, and after receiving proper genetic counseling, the patient can do whatever they need to insure longer, healthier life. Mimi Joling did this by surgically removing her ovaries, which has reduced her chance of ovarian cancer by 90 percent and her chance of breast cancer by half. She is also taking the chemo preventive medicine, tamoxifen. “Right now I feel wonderful,” Joling said. “I’m really happy with the decisions I’ve made” (Women’s Health Weekly 29).

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