Deciding Who in the Family Should Get Tested, Research Paper Example

One of the most pressing issues that faces the pediatric population is parental concern as to whether their child expresses genetic disease markers. In particular, mother’s that have had breast cancer and have tested positive for either BRCA1 or BRCA2 are concerned that their daughters will also express the gene, therefore increasing their likelihood of getting breast cancer later in life. Doing so have both disadvantages and advantages. A major disadvantage is that insurance companies may become aware of the child’s health status and be less likely to cover her for a variety of related or unrelated health issues. On the other hand, a major advantage of this early diagnosis is that the child could be counseled by her health care team to inform her ways that she could lower the environmental risks associated with BRCA1/2 breast cancer development.

While much of the available evidence indicates that BRCA1/2 are genetic markers for breast cancer and that a large percentage of individuals with this oncogene do develop the disease after age 40, there is much debate as to whether children under the age of 18 should be tested to determine their potential for disease status (Lerman et al., 1996). A major reason for this is that a majority of current knowledge available for this specific cancer pertains only to the adult population. Since there are no safe or effective therapies available to treat or prevent breast cancer in young patients, a majority of health care professionals believe that there is no need to seek genetic counseling at a young age. Furthermore, it is also advised that children not be informed of their disease status because they are unable to make their own decisions concerning potential treatments and lifestyle changes (Breastcancer.org, 2014). Against professional advice, however, many parents claim that they still want to get their children tested.

Ultimately, the major ethical issue presented in this case is whether the health care professional should make the decision as to whether an adolescent should or shouldn’t be tested for having the BRCA1/2 gene, or whether the responsibility for making this decision should fall to the parent. Therefore, according to the American Nurses Association, one of the ethical principles that is relevant in this situation is that “The nurse promotes, advocates for, and strives to protect the health, safety, and rights of the patient”. In this situation, it is difficult to discern the rights of the patient due to their young age. Furthermore, if parents have the ability to represent the rights of their children and would like them to be tested for this oncogene, their wish could potentially disrupt the ability of the nurse to project the patient’s safety. A second ethical principle that is relevant to this situation is that “The profession of nursing… is responsible for… shaping public policy” (American Nurses Association, n.d.). Therefore, the opinion of nurses on this matter could potentially shape the practice of genetic testing for minors, so it is best for all nurses to act in the interest of a majority of their patients.

There are both many private and public interests that could be met by allowing minors to be tested for oncogenes and other genetic markers. Of primary consideration is the members of private industry that would profit by selling a greater amount of genetic testing equipment. The stakeholders of these companies would also benefit by seeing the value of each share rise due to the greater number of sales. Furthermore, the parents would also be impacted by this decision because this would determine whether or not they have the right to make certain preventative care choices for their children (Hamann et al., 2000). It would also impact the ability of health care professionals to dictate whether or not this testing should be conducted for this particular patient population. Lastly, this will impact the future generations of patients and parents, because a policy change will indicate that practice will continue in this manner under evidence-based studies overturn these regulations. This is tied into the role that the government has, as they are able to impact the decision as to whether or not the right for testing should be allowed or taken away; it is likely that this decision will be made on the basis of the populations in which their supporters lie.

It is important to consider that many of the decisions that are made in medicine are a conversation that occurs between the health care professional and the patient. In the pediatric setting, it is more likely that this conversation will occur between the health care professional and the patient’s parent or guardian. Therefore, the decision as to whether the parent or the health care team should allow a minor to undergo genetic testing for BRCA1/2 should be a compromise between both parties. Even though this testing could be potentially detrimental for a young child, it is impossible to predict all possible scenarios, so the ability to do so shouldn’t be blocked altogether. Since nurses are first and foremost required to uphold the standards of the field, health care professionals should reserve the right to be able to deny a child patient this testing if they believe that it would be extremely detrimental to her health, and instead recommend that the patient visit another health care facility for a second opinion.

Ultimately, this solution would be beneficial because it will protect the interests of female patients under the age of 18. While a majority of parents certainly want what is best for their children, their want to help occasionally undermines professional knowledge. Therefore, it is essential for health care professionals to provide these parents with all knowledge necessary regarding BRCA1/2 testing and potential social medical consequences (Tercyak et al., 2001). Since each case is different, avoiding making this testing illegal for this patient population is beneficial, as it will still allow for flexibility if the health care teams decide that testing is the proper choice for an individual patient. This would somewhat negatively impact the parent’s ability to make heath care decisions for their child, but it is important to emphasize that this testing is a major choice that the child may come to regret when she comes of age.

Enforcing ethical decision making is often the responsibility of the health care supervisors and institutional administration. There is often an Institutional Review Board (IRB) to approve the ethics related to research in the health care setting. The ethics committee is typically comprised of physicians across a wide variety of specialties, the senior management of the hospital, the hospital chaplain, and experts on the social aspect of medicine and health care. While health care professionals are responsible for making their own ethical decisions, they are always able to turn to the committee for support if they find that they encounter a particularly complex situation and need advice.

References

American Nurses Association. (n.d.). Code of Ethics for Nurses. Retrieved from http://www.nursingworld.org/codeofethics

Breastcancer.org. (2014). Deciding Who in the Family Should Get Tested. Retrieved from http://www.breastcancer.org/symptoms/testing/genetic/who_to_test

Hamann HA, Croyle RT, Venne VL, Baty BJ, Smith KR, Botkin JR. (2000). Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation. American Journal of Medical Genetics, 92(1): 25-32.

Lerman C, Narod S, Schulman K. (1996). BRCA1 Testing in Families With Hereditary Breast- Ovarian Cancer. JAMA, 275(24):1885-1892.

Tercyak KP, Peshkin BN, Streisand R, Lerman C. (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology, 10(4): 336-346.