BRCA1 and BRCA2 Genetic Testing in Minors: Ethical, Legal and Social Issues, Essay Example

BRCA1 and BRCA2 are named for genes that produce tumor suppressor proteins. Tumor suppressor proteins act to fix damaged DNA within cells; therefore, the role of the suppressor proteins is to maintain the cellular genetic material. Any alteration in tumor suppressor protein DNA, such as a mutation, results in the ability of the protein to repair damaged cells. The alteration further results in an increased possibility of cancer or tumor growth. In addition, specific inherited mutations in BRCA1 and BRCA2 increase the risk of female breast and ovarian cancer. In fact, it is accounted for 20-25% of inherited breast cancer. Furthermore, the chance of inheriting the gene from an infected parent is 50%. Genetic tests are available to screen for the gene and it is suggested for individuals with known family history. (National Cancer Institute, 2013) The current paper discusses the ethical, legal and social issues of genetic testing in a 10 year old girl whose mother was diagnosed with breast cancer.

From a legal medical standpoint, medical professionals have a duty to disclose information in order to allow parents to make a decision on the testing for their child. It is also implied that current medical tests have little to no harm on the patient and therefore, even a child could undergo the test without issues or complications; however, in regard to BRCA1 and BRCA2 testing, there is not enough known about the long term consequences of the tests on those who receive. Since there is little known about long term effects, there is most likely little known about children receiving this specific genetic test. Therefore, it raises ethical questions for the medical professionals and parents when considering allowing an adolescent to undergo the testing. Medical professionals recommend that the initial person be tested in a family to see if they carry the harmful BRCA1 and BRCA2 gene mutation. If a carrier, it is recommended that individuals who do not have cancer within the family obtain the test in order to undergo preventative measures. (National Cancer Institute, 2013) However, in children, the testing of late-onset disorders, such as breast cancer is not recommended. Testing in children excludes the possibility of future decisions and increases the risk of cancer stigmas and discrimination. (Pediatrics Committee on Bioethics, 2011)

In addition to the ethical questions of allowing the child to take the test, the outcome of the test can result in various social issues. Positive test results can lead to anxiety in both the parent and child about the possibility of developing cancer, as well as guilt from the parent about passing on a mutated gene to their child. Furthermore, stress within the family can increase in regard considerations for cancer prevention and early detection techniques, as well as informing other family members of the condition. (Mayoclinic, 2013) One factor that parents should consider is that the test predicts increased risk, not certainty of the disease, which could lead to decisions that are irreversible. For instance, a positive test result could lead to discussions about mastectomies, which can have both psychological and social consequences on a 10 year old girl.

Although professional recommendations have been against testing minors for late-onset genetic disorders, there is still ongoing debate about the ethical and clinical consequences of the testing. Advocates for testing minors have argued that there is more harm in not knowing or withholding information in regard to lethal disease. (Bradbury et al., 2008) However, in addition to the genetic information provided in the testing, the testing also introduces legal issues such as disclosure of family information that would be helpful to other family members, but leads to breach of confidentiality. (National Cancer Institute, 2013)

Further research is necessary in order to access the risks and benefits of introducing and allowing minors to be tested for late-onset diseases. Medical professionals and parents should consider the outcomes of all ethical, legal and social issues that could arise from both positive and negative test results, before opting for their child to participate in the testing.

References

Bradbury, A.R., Miller, L., Pawlowski, K., Comfort, N., Cummings, S.A., Olufunmilayo, I.,

Daugherty, K. (2008). Should Genetic Testing for BRCA1/2 Be Permitted for Minors? Opinions of BRCA Mutation Carriers and Their Adult Offspring. American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 148C:70–77.

Mayoclinic. (2013). BCR1A Gene Testing for Breast Cancer. Retrieved from: www.mayoclinic.com

National Cancer Institute. (2013). BRCA1 and BRCA2: Cancer Risk and Genetic Testing. http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

Pediatrics Committee on Bioethics. (2011). Ethical Issues with Genetic Testing in Pediatrics. American Academy of Pediatrics. 115(5):1438.