Pros and Cons of Genetic Testing

1. The concerns Tonya and Lisa have regarding genetic testing raises several ethical questions that Dugas (2005) outlines. The right to self-determination is central in matters linked to genetic testing, and nurses do need to understand their role in providing informed consent when patients are faced with a decision similar to that of Tonya and Lisa (Dugas, 2005). In addition to providing patients with all the information they need to make informed decisions, nurses also have an ethical duty to strengthen relationships among all members of the healthcare team to promote patient advocacy during the decision-making process. As Dugas (2005) points out, “establishing the links among families, health-care systems, and community is an integral part of the nursing role in genetic health care,” (p. 106). As this case study also reveals, genetic testing is unique in that patients are “revealing information about their genetic makeup that typically remains unknown to themselves and others,” (Dugas, 2005, p. 106).
The ethical conundrums the information can reveal challenge nurses to provide patients with the best possible care, while simultaneously keeping in mind the best interests of family members too. Based on her experience with her mom, Lisa desperately wants to receive the test as she believes it will help her make more informed choices about her future and will even impact her reproductive decisions. Tonya, on the other hand, warns her friend about the risks of revealing such sensitive information. Knowing also that genetic testing is elective and therefore paid for out of pocket, Tonya also raises critical ethical issues related to healthcare disparities. Finally, Tonya points out that insurance companies might turn down Lisa if her test results were positive. This latter point links with Dugas’s (2005) analysis of privacy and confidentiality issues.
2. There most certainly can be risks to genetic testing. A nurse is ethically obliged to divulge information and ensure informed consent, as Dugas (2005) points out. For example, both Tonya and Lisa have a history of breast cancer in their immediate family and therefore suspect that they might be at a higher than average risk for developing breast cancer too. The risk of not getting genetic testingn also needs to be considered alongside the risks of getting tested. As Lisa so adamantly points out in the case, not getting tested can be dangerous because early detection is a crucial factor in prognosis (BreastCancer.org, 2017).
Moreover, preliminary research shows tentative support for Lisa’s position. Frank & Braverman (1999), for example, found that “evidence suggests that for individuals in high-risk families it is more beneficial to know than not to know one's genetic status,” (p. 139). The reasons why the test could be beneficial include the ability to empower the patient with knowledge and the ability to be proactive about her health. Because the test results are not necessarily definitive, the nurse needs to elucidate their implications and discuss what the results mean openly and honestly. As Dugas (2005) points out, informed consent and communicating with all members of the healthcare team throughout the decision making process will help the patients make the best decision for them.
Yet Tonya is also correct to point out the problems with genetic testing, such as being turned down by a health insurance company if the results were indeed positive. Her cost-related considerations raise critical issues in healthcare policy but may not be as relevant to Tonya and Lisa if both patients can afford the genetic testing. However, there are additional social and psychological concerns with breast cancer genetic testing. For example, organization Breast Cancer.org also elucidates the potential psychological effects of receiving an abnormal test result: “an abnormal test result can trigger anxiety, depression, or anger,” (p. 1). Viewed from an ethical perspective, the nurse needs to keep in mind the best interests of both Lisa and Tonya when making any recommendation that could lead to mental health problems.
3. When providing counsel and information related to genetic health care information, nurses need to come from a position of providing knowledge that empowers the patient to make informed and autonomous decisions. As Dugas (2005) points out, nurse practitioners and clinical nurse specialists “have advanced knowledge abilities and skills related to clinical assessment, case management expertise, evaluation, and treatment interventions,” (p. 107). The reason why Dugas (2005) stresses the importance of sharing information among a healthcare team is that through a multidisciplinary team, nurses have access to a broader information base to help patients make informed decisions based on evidence. Ideally, all nurse practitioners can be trained in counseling patients about genetic health care. Nursing professionals also need to have protocols for making referrals to the appropriate genetic specialists and genetic counselors (Dugas, 2005, p. 107). Patients can be directed also towards credible online or printed sources of information about genetic testing.
While it would be unreasonable to expect nurses to possess special qualifications, it is totally reasonable that all nurses should defer to specialists in genetic counseling who are members of the patient’s healthcare team. Participating in a healthcare team confers distinct advantages to the nurse practitioner as well as to the patient. The patient will have access to a wider range of information and can make more informed decisions; likewise the nurse is able to counsel the patient holistically, taking into account mental as well as physical health concerns, concerns for the family and extended community, and any other variables that might impact the decision.
4. A nurse should always “recognize when one’s own attitudes and values related to genetic and genomic science may affect care provided to clients” (p. 11). To prevent bias and ensure optimal patient care, nurses should remain aware of their attitudes and beliefs throughout their professional practice. Self-awareness and cultural competency helps nurses to recognize and overcome biases that prevent them from empowering patients. Even if I disagreed with one or the other patient in this case study, that personal disagreement should not preclude me from offering advice in the best interest of the patient. The nurse practitioner understands that few patients will share their same worldview or belief system, related to healthcare or anything else. Therefore, respecting patient diversity is critical to all nursing practice and not just cases like these involving genetic testing.
If a nurse practitioner found that her personal beliefs were interfering with the ability to offer the patient information or advice, then it would be important to speak with other members of the healthcare team before proceeding. The right to self-determination is central to nursing ethics (Dugas, 2005). Nurses can potentially interfere with patient self-determination by consciously or inadvertently withholding information or influencing a patient’s decision. Withholding information about genetic testing or its implications for psychological and physical health would be just as unethical as giving the patient incorrect information. A nurse should be able to transcend his or her own personal beliefs when working with patients interested in, or skeptical about, genetic testing.
Both Lisa and Tonya have made valid points. The goal is to act in the patient’s best interest: “Nurses have a responsibility to assure that patients are informed about their health status and treatment alternatives and that patients actively participate in planning and decision-making,” (Dumas, 2005, p. 106). By informing both Lisa and Tonya of all possible outcomes and scenarios, the nurse helps them to make a decision based on facts and their own beliefs.







References

BreastCancer.org (2017). Seeking your genetic information: Pros and cons. Retrieved online: http://www.breastcancer.org/symptoms/testing/genetic/pros_cons
Dugas, R. (2005). Nursing and genetics. Journal of Professional Nursing 21(2): 103-113.
Frank, T.S. & Braverman, A.M. (1999). The pros and cons of genetic testing for breast and ovarian cancer risk. International Journal of Feertility and Women’s Medicine 44(3): 139-145.