Ethics and Genetic Testing 2

I am listing three discussion postings about Ethics and Genetic Testing. I need you to give a response to each on whether you agree or disagree and why you agree or why you disagree. 1) Jamie stated that:The Human Genome Project, a multibillion dollar program, is in place to identify and study the tens of thousands of genes that make up our DNA. From the text in the article it seems as though scientists are discovering the genes faster than the government can keep up with monitoring and regulating how the results will affect us legally, ethically and socially, not only as a whole but in particular as individuals. I have mixed thoughts and feelings regarding genetic testing. As a nurse I think it can be a useful and successful tool in the progression of science, medicine and diseases. The responsibility of the medical provider and health care professionals to identify patients at risk, patients at risk for giving birth to a child with abnormalities and patients at risk for having a child predisposed to certain cancers, are part of this debate. The MD can suggest or recommend that genetic testing is done based on their assessment and history of the patient which relies on the patient being 100% honest with the physician about their family and medical history. Each person is entitled to know their options when it comes to genetic testing especially if their history or family history demands it, but I am concerned with the patients who have no medical reason or history to have it done but want it anyway. Will this be a way for people to pay enormous amounts of money legally and illegally to medical professionals to have or not to have a perfect child? If genetic testing results in the child having black hair instead of blond hair, would that or could that be a deciding factor for a patient whether to terminate the pregnancy. I know it is a far-fetched scenario and question but if a patient has the means and access to the right people/professionals, it could be a possibility. As the nurse providing support to a couple seeking guidance, I would need to be competent in my knowledge base of genetic testing. I would need to provide accurate medical information and evidenced based facts if questioned. It would not be responsible or ethical for me to give my opinion regarding their choices. As nurses we adhere to a Code of Ethics that states that we have “a moral option of refusing to participate in care when placed in situations of compromise that exceed acceptable moral limits or involve violations of the moral standards of the profession, whether in direct patient care or in any other form of nursing practice.” But, the American Nurses Association (ANA) states moral objections by the nurse do not include “personal preference, prejudice, convenience, or arbitrariness.” With this stance from the ANA, it is clear that my personal morals, ethics and beliefs are restricted from interfering with patient care. If I believe that I cannot care for a patient who chooses to terminate a pregnancy based on the results of genetic testing than it is my responsibility to report my feelings to an immediate supervisor or medical professional and replacement care for that patient should occur. The ANA states that “the nurse who decides not to take part on the grounds of conscientious objection must communicate this decision in appropriate ways. Whenever possible, such refusal should be made known in advance and in time for alternate arrangements to be made for patient are.” This will be an interesting topic to debate… 2)Debbie stated that: Genetic tests use a variety of laboratory techniques to determine if a person has a genetic condition or disease or is likely to get the disease. I feel individuals should be tested if they wish. I believe you should test if there is a family history of one specific disease. You should test if there are symptoms of a genetic disorder or if you are concern about passing on a genetic problem to the children. As a nurse, you must give the individual/patient all the information concerning the specific test and make sure they are knowledgeable and understand all there is to know. Nurses must make sure all concern understand any risks, benefits, effectiveness and alternatives to genetic testing. Nurses must maintain individual's privacy. Nurses need to obtain informed consent/permission to do the testing. Nurses must use confidentiality and acknowledge this information is sensitive and access should be limited to those who are authorized to receive it. Nurses should be familiar with and comply with institutional, state and federal polices. As healthcare providers, we should not pressure individuals to undergo testing, but be prepared to support individuals/families in their decision making processes. There can be psychological issues that arise from the clinical diagnoses themselves and how they might influence one's perception of the genetic information. There can be psychological issues, such as denial, anxiety, anger, grief, guilt or blame. Some individuals worry about being denied insurance, their insurance premium being raised or their testing may not be covered by their insurance. Some may feel stigmatization, familial guilt or discrimination within the community. Individuals need the opportunity to voice and talk about their feelings. They need to know that you as the nurse are there for them and their family to help with their needs, understanding or support of their decision. They need to know that there is counseling or support/peer groups available. They need to know to take their time and explore all issues before undergoing testing. They need to know that testing is a personal choice and is not for everyone. Only they can decide what is right for them. To address the refusal of care for patients, I think nurses have an ethical duty to care for, support their decisions and keep a patient safe regardless of the nurse's personal beliefs. I believe a nurse can take care of a patient even if there are conflicts about treatments/decisions/care from the nurse regarding the nurse's beliefs or values. If the nurse understands/knows who she/he is as an individual person, the nurse would understand that the patient is not them and is an individual/unique person not associated with the nurse's beliefs/feelings. In the case of emergencies, all nurses should be required to provide care despite any conflict. The (ANA) stated “Where a particular treatment, intervention, activity or practice is morally objectionable to the nurse…the nurse is justified in refusing to participate on moral grounds…The nurse is obliged to provide for the patient's safety, to avoid patient abandonment and to withdraw only when assured that alternatives sources of nursing care are available to the patient.”- American Nursing Association, Code of Ethics. Resources: 3)Marita stated that: Genetic testing seems to be somewhat controversial. Carrier testing can be done for a couple that are at a higher risk of having a child with a specific disorder due to their racial or ethnic heritage or family history. Prior to becoming pregnant I can see the benefit of testing the couple if there is a known inherited gene in either the man, woman or both. This will help them in making the decision about pregnancy and the potential to pass the defective gene on to their children. The couple that seeks screening for a fetus will need to be informed that there is no treatment available during pregnancy for most conditions being screened for. If they opt for screening and there is a positive result for the fetus to have a serious birth defect they will need education and emotional support from the nurse. The role of the nurse will be to provide accurate answers to questions the couple may have and to keep the information confidential. The personal values and beliefs of the couple should be considered. For example if the screening results in a serious birth defect what is their view on terminating the pregnancy. If they choose not to terminate the pregnancy this will allow them time to meet with consultants for treatment options in the newborn and allows them time to cope with knowing they will have a child with a birth defect and how this will impact their life physically, emotionally and financially. The emotional well-being should be assessed to identify if they will benefit from additional counseling and support. There is a chance the screening result is a false positive or a false negative. If the couple decides to terminate the pregnancy due to a serious birth defect I do not feel the nurse has the right to refuse to care for this couple. Personal ethics and values should not affect the way the nurse treats the patient. It is the duty of the nurse to keep the patient safe and provide care. The ability to eliminate offspring with genetic defects would be economical for the health care industry since this diagnosis may prevent the birth of defective, costly children. Does prenatal genetic testing and diagnosis indicate that society is becoming less tolerant of disability? How accurate are these screenings? Are couples making the decision to terminate a pregnancy of a normal fetus with no genetic defect due to a false positve screening result?