Genetic testing is a new era technology applied biological process that can help a vulnerable to detect susceptibilities of any disease or defect. From the healthcare as well as personal viewpoint genetic testing is considered a very useful technique applicable in the diagnosis process. Complex diseases like breast cancer, ovarian and colon cancer are detected at the very early stage with the help of genetic testing process (Harper, 2010).
In this essay, a clear discussion on one of the most prominent ethical issue in genetic testing for breast cancer is made that is patient confidentially about their personal information of breast cancer genetic testing. A brief summary of an article that discusses this similar issue followed by rationale in support of mandatory breast cancer genetic screening is discussed in this essay.
Genetic epidemiology of breast cancer
Breast cancer is considered to be second most prominent cancer in females after skin cancer as well as first most cancer death reason in females. In the year, 2008 there was 13.7% female death due to breast cancer worldwide. Since 1970s the number of death due to breast cancer has increased rapidly due to the contribution of contemporary lifestyles (Davis, 2010). Further, Butow et al. (2013) studied that in the United States, 1 out of 8 women hold a lifetime risk of breast cancer and 1 out of 35 women die due to cancer. The highest annual breast cancer risk is highest in the United States that is 128.7 per 1 lakh Whites and 111.6 per 1 lakh African Americans. As per studies of Peterson et al. (2012) breast cancer remains to be one of the most feared diseases in Untied States women being a most complicated form of the disease.
Being such serious hazard to health, the genetic testing for breast cancer hold ethical dilemmas especially regarding its confidentiality and sharing of information. Goldenberg & Sharp (2012) conducted a survey where family members of 160 breast cancer probands were surveyed to analyse their notification status about family history of breast cancer. There were 376 participants out of whom 71% were first or second blood relatives and 82% were blood relatives. The 24% of participants were not aware or notified about their family history of breast cancer where 76% were blood relatives remaining unaware. This indicates that confidentiality or patient informed decision to share information is a very sensitive issue in this disease.
Further, Brierley et al. (2012) studied the impact of confidentiality, cost and potential discrimination on the peoples pursuing of genetic testing. As per this study involving 184 participants 106 underwent testing and 78 denied testing due to the reason of cost, confidentiality and discrimination. According to the study of Butow et al. (2013), 238 people being first degree relative of breast cancer sufferer were surveyed about their attitudes towards confidentiality and autonomy in breast cancer genetic testing. As per findings, 86-87% women denied about the disclosure of their genetic results, 56-57% wanted the process of informed consent before sharing information with anyone in their own family and 98% favoured the voluntary and mandatory genetic testing for breast cancer. This indicates that genetic screening for breast cancer holds public importance and requirements with an ethical dilemma.
Brief summary of article
This article covers information about the legal and ethical issues in genetic testing for ovarian, breast and colon cancer. These three cancers share an almost same level of confidentiality and privacy in the life of a woman. The article explains the ethical conflict between patient confidentiality and professionals duty to disclose information for the welfare of others. The articles explain general duties of disclosure and duties regarding disclosure of genetic susceptibility further discussing confidentiality, liabilities of genetic counselling, genetic screening of new-born and prenatal diagnosis. Further, the article details public perception about genetic discrimination, public health testing and ethical issues related to breast cancer.
As per author’s research in this article, genetic testing for breast cancer is a feminist ethical concern. The traditional perceptions, political and professional authorities to women decide their attitude towards such new technologies and trends in society. Women still being the victim of traditional feminist perception try to overview the healthcare requirements and choose not to disclose their personal information. However, there are attempts to overcome traditional perceptions providing awareness and alertness to the female part of the society. However, lastly article states that ethical dilemma and conflicts regarding the genetic testing susceptibility of cancer still remains and will remain a feminist discussion, therefore, it is required to promote healthcare ethics with the help of feminist methods to give women their right to autonomy as well as confidentiality (Dickens, Pei & Taylor, 2012).
Ethical issue in breast cancer genetic screening
The patient confidentiality matter has always been a major ethical issue in genetic screening for breast cancer due to reasons like privacy, female social status, feminism and security. However, studies state that disclosure of information in breast cancer screening is a very overrated ethical issue that requires certain legal obligations for performance (Harper, 2010). According to Butow et al. (2013) study, even the family members of the family having a history of breast cancer are not notified about this situation in traditional times. This has created confidentiality issues for contemporary practices like genetic screening. In a survey of 1,251 healthcare physicians handling genetic screening of breast cancer, 53% admitted that physician’s need to ensure confidentiality to their patient’s instead to explaining them the requirement to disclose information, especially to their families.
Peterson et al. (2012) studied that as per legal obligations in the United States, any healthcare physician is obligated to protect patient information and not disclose the information without patient consent. In the case of genetic screening, confidentiality breaches are considered legal offence by law. This makes physician unable to disclose information even if patient’s relative is at high risk of similar disease. Clayton et al. (2014) indicated that breast, colon and ovary cancers are considered as most risky cancer for children, siblings and other relatives of the patient. However, as per confidentiality law, there is no legal duty of the physician to warn about this risk indicating that patient confidentiality is the basic priority. But, in the case of physician getting aware of the patient that may infect a spouse then it is their legal duty to warn the spouse leading to disclosure of information. This unclear vision makes confidentiality an ethical issue for genetic screening of breast cancer.
Rationale for the mandatory breast cancer genetic screening
The genetic screening process for breast cancer should be a mandatory part of public health and concerns irrespective of ethical issues and conflict because increase risk to such deadly diseases can harm the equilibrium of human survival. The contemporary processes like genetic screening are the harmless diagnosis that assures safe position or existence of risk even in the foetus through prenatal screening providing a promising control over future risk (Davis, 2010).
According to Dancey et al. (2012), mandatory genetic screening will help in timely counselling and decrease the risk of vulnerable death. Clayton et al. (2014) opine that mandatory genetic screening for breast cancer would work a revolution in the healthcare status of women globally creating political stability towards their position in society. Therefore, these reasons clearly justify genetic screening to be a mandatory process for the welfare of women health.
As per this study, confidentiality remains a major ethical issue in the case of genetic screening for the disease like breast cancer. The reasons like traditional beliefs, privacy and protection of vulnerable makes it an ethical issue. But still, this genetic screening process for diagnosis breast cancer holds a promising future for better women health status by avoiding the risk of disease and deadly outcomes.
Davis, D. S. (2010). Genetic dilemmas: reproductive technology, parental choices, and children's futures. Oxford University Press.
Harper, P. S. (2010). Practical Genetic Counselling 7th Edition. CRC Press.
Brierley, K. L., Blouch, E., Cogswell, W., Homer, J. P., Pencarinha, D., Stanislaw, C. L., & Matloff, E. T. (2012). Adverse events in cancer genetic testing: medical, ethical, legal, and financial implications. The Cancer Journal, 18(4), 303-309.
Butow, P. N., Lobb, E. A., Meiser, B., Barratt, A., & Tucker, K. M. (2013). Psychological outcomes and risk perception after genetic testing and counselling in breast cancer: a systematic review. Medical Journal of Australia, 178(2), 77-81.
Clayton, E. W., McCullough, L. B., Biesecker, L. G., Joffe, S., Ross, L. F., Wolf, S. M., & For the Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group. (2014). Addressing the ethical challenges in genetic testing and sequencing of children. The American Journal of Bioethics, 14(3), 3-9.
Dancey, J. E., Bedard, P. L., Onetto, N., & Hudson, T. J. (2012). The genetic basis for cancer treatment decisions. Cell, 148(3), 409-420.
Dickens, B. M., Pei, N., & Taylor, K. M. (2012). Legal and ethical issues in genetic testing and counseling for susceptibility to breast, ovarian and colon cancer. CMAJ: Canadian Medical Association Journal, 154(6), 813.
Goldenberg, A. J., & Sharp, R. R. (2012). The ethical hazards and programmatic challenges of genomic newborn screening. Jama, 307(5), 461-462.
Peterson, E. A., Milliron, K. J., Lewis, K. E., Goold, S. D., & Merajver, S. D. (2012). Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population. Cancer Epidemiology and Prevention Biomarkers, 11(1), 79-87.